LTCcovid Country Profile – Printable Version

Update for: England (UK)   Last updated: October 23rd, 2024

Update for: Scotland (UK)   Last updated: October 23rd, 2024

1.00. Brief overview of the Long-Term Care system

The majority of long-term care in England is provided by unpaid carers. Formal long-term care in England is provided by a complex system involving organisations in charge of health, social care, housing and other services. There is an important distinction between means-tested social care (non-medical services aimed at supporting people with LTC needs with their daily living activities) and health care services, which are free at the point of use and funded from general taxation.

Formal care services include home-based care services, personal assistants, residential/institutional care, day care and professional services such as social work, occupational therapy and aids and adaptations. Most publicly funded services are commissioned at local level, but, as a large share of the population who use long-term care is not covered by the public system, a large share of care is purchased directly from private providers.

There is strong consensus on the urgent need to reform the social care system in England.

References:

Comas-Herrera, A., Glanz, A., Curry, N., Deeny, S., Hatton, C., Hemmings, N., Humphries, R., Lorenz-Dant, K., Oung, C., Rajan, S., Suarez-Gonzalez, A. (2020). The COVID-19 Long-Term Care situation in England. LTCcovid.org, International Long-Term Care Policy Network, CPEC-LSE

Marczak, J. Fernandez, JL, Wittenberg, R. (2017). Quality and cost-effectiveness in long-term care and dependency prevention: English policy landscape. CEQUA report

Thorlby, R., Starling, A., Broadbent, C., Watt, W. (2018). What’s the problem with social care, and why do we need to do better?  The Health Foundation, the Institute for Fiscal Studies, The King’s Fund and the Nuffield Trust

Update for: England (UK)   Last updated: March 10th, 2022

1.00. Brief overview of the Long-Term Care system

In Scotland, Long-Term Care is known as social care. This care can take the form of care services delivered in a person’s own home, for example personal care support and meals services, or care provided in the community, for example day care and social work support, to care provided within a care home. Public Health Scotland estimated that in the financial year 2018/19, at least 245,650 people of all ages received social care services. Of those, over 77% were aged 65 and over.

Data from the Care Inspectorate Scotland show that at 31^st March 2020 there were 1,083 registered adult care homes in Scotland, of which 817 catered for older people. Public Health Scotland (formerly Information Services Division Scotland) data from the Scottish Adult Care Home Census show that in 2017, there were 40,926 registered care home places for adults. This figure has decreased from 42,653 in 2007. Over the period 2007-2017, the number of registered places for older people has remained relatively stable at around 38,200 throughout the period. The pandemic has highlighted the data deficiencies within the care home sector The latest data available for Scotland from a report by Public Health Scotland show that in March 2017 there were 35,989 adult care home residents in Scotland (Source: Care Home Census for Adults in Scotland).

For the last two decades, Scottish policy has favoured care provision in individuals’ own homes rather than in care homes. According to the Care Inspectorate data as of 31^st March 2019, there were 1,046 registered adult care at home providers in Scotland. A Public Health Scotland report on social care statistics in Scotland estimated that 91,810 people in Scotland received home care for all or some of the year ending 31 March 2019. The same report estimated that at the end of that period,  63% of adults with long-term care needs received personal care at home. Personal care is care associated with personal hygiene, feeding, toileting and appearance.  In 2017-18, 47,070 people aged 65+ were receiving personal care funded by the Scottish Government in their own homes (An Official Statistics publication for Scotland).

Update for: Scotland (UK)   Last updated: March 10th, 2022   Contributors: Jenni Burton  |  David Bell  |  Elizabeth Lemmon  |  David Henderson  |  

1.01. Population size and ageing context

By mid-2020 the population in England was estimated to be 56,550,000, representing 84% of the total population of the United Kingdom. The median population age in England was 40.2 years. The share of the population aged 65 years and over was 18.5% and the share aged 85 and over was 2.5% (Source: ONS).

Update for: England (UK)   Last updated: December 4th, 2021   Contributors: Adelina Comas-Herrera  |  

1.01. Population size and ageing context

In mid-2020 the total population in Northern Ireland was 1,896,000, which represents 2.8% of the total population of the United Kingdom. The median population age was 39.2. The share of the population aged 65 and more was 16.9% and share aged 85 and over was 2.1% (Source: Population estimates for the UK).

Update for: Northern Ireland (UK)   Last updated: March 8th, 2022

1.01. Population size and ageing context

In mid-2020, the total population of Scotland was 5,466,000, representing 8.1% of the total population of the United Kingdom. The media population age was 42.1 years. The share of population aged 65 or over was 19.3% and the share aged 85 or over was 2.3% (Source: ONS).

Update for: Scotland (UK)   Last updated: March 10th, 2022   Contributors: Jenni Burton  |  David Bell  |  David Henderson  |  Elizabeth Lemmon  |  

1.01. Population size and ageing context

The total population in the United Kingdom in mid-2020 was 67,081,000. The median population age is 40.4, with 18.6% aged 65 and over, and 2.5% 85 and over (Source: ONS: Population estimates for the UK).

Update for: United Kingdom   Last updated: March 8th, 2022

1.01. Population size and ageing context

In mid-2020 the total population of Wales was 3,170,000, which represents 4.7% of the total population in the United Kingdom. The median age of the population was 42.4. The share of the population aged 65 and over was 21.1% and the share aged 85 and over was 2.7 (Source: Population estimates for the UK).

Update for: Wales (UK)   Last updated: March 8th, 2022

1.02. Long-Term Care system governance

The Department of Health and Social Care (DHSC) has overall policy responsibility for setting adult long-term care policy in England and the legal framework, and is accountable to Parliament and public for the performance of the system. The Ministry of Housing, Communities & Local Government oversees the distribution of funding to Local Authorities (LAs) and the financial framework within which local authorities operate.

The Care Act 2014 sets out the responsibilities of 152 LAs in the assessment of social care needs, commissioning and organisation of care, LAs also deliver some services directly, but this is increasingly rare (Source: The Care Act 2014).

The National Health Service (NHS) in England was established by the National Health Service Act of 1946. NHS England is an arm’s-length body of the DHSC and is responsible for arranging the provision of health services in England. The DHSC sets objectives for the NHS through an annual mandate. Since 2013, Clinical Commissioning Groups have been responsible for commissioning hospital and community care for their local populations. In relation to Long-Term Care, nursing and rehabilitation services are mostly provided through the NHS, or funded by the NHS and provided by social care providers for individuals who require nursing in a social care setting or that are considered to have primarily a health need (Source: NHS Continuing Healthcare).

The Care Quality Commission regulates care providers for quality, monitoring and inspecting services to ensure they meet quality and safety standards, and also provide oversight of the financial resilience of the largest and potentially most difficult-to-replace care providers. They publish their findings, including performance ratings.

Although there are initiatives at local and regional levels which aim to integrate health and long-term care services (with varying degrees of success), they remain two separate systems. The NHS White Paper published in February 2021 sets out legislative proposals to establish Integrated Care Systems (Source: Integration and innovation; see question 4.04 for more details).

Update for: England (UK)   Last updated: March 8th, 2022

1.03. Long-term care financing arrangements and coverage

Overview

In 2018, LTC expenditure in the United Kingdom was estimated by the OECD to represent 1.8% of Gross Domestic Product.

Who bears the costs? Unpaid care, formal social care and healthcare and out-of-pocket spending

A large share of the resources that fund long-term care are provided in kind, through the time and effort of unpaid carers. Formal long-term care services in England are funded differently for health care, which is free at the point of use through the National Health Service (NHS) and social care, which is means-tested. Individuals who need care and their families also contribute to the costs of care through purchasing services privately or out-of-pocket payments for services. The Office for National Statistics estimated that, between 2019 and 2020, 36.7% of care home residents paid for their own care privately.  There is strong consensus on the need to reform social care funding and reforms are under way (see question 4.02).

As an illustration of who bears the costs of long-term care in England, it is useful to look at the study by Wittenberg et al., 2019, which found that, in 2015, 42% of the £24.2 billion costs of care of people with dementia were attributable to unpaid care, formal social care services represented another 42% and health care 16%. Out of the £10.2 billion social care costs, £6.2 billion were met by people who use care and their families, and £4.0 by the government. This means that the public sector only funds one third (32.6%) of the costs of dementia, leaving users and families to shoulder the rest of the costs through unpaid care or care fees. The cost of dementia estimates include health care costs that are not strictly “long-term care”, for example diagnostic services and hospitalisations, meaning that the share of public funding for long-term care for people with dementia is even lower than this estimate (Wittenberg et al., 2019).

Eligibility criteria for funded care

Eligibility to publicly funded social care is decided through means-testing, the levels are set nationally. People who exceed a certain level of savings and other assets (e.g. property) have to pay for care themselves. People below lower threshold,  £14,250 in 2022,  do not have to contribute anything towards their care, while people above £23,250 in 2022 have to fund all their social care costs. Between these two thresholds people have to contribute on a sliding scale. The upper threshold has not changed since 2010/11 which taking into account levels of inflation means that it went down in real terms (Bottery et al., 2022).

The distinction between ‘health’ and ‘care’ creates  inequity. A person deemed to have health needs may be able to access social care via the NHS’s continuing healthcare programme (although subject to restrictive eligibility criteria and long waiting times), but someone with personal care needs (e.g. arising from dementia) and no medical requirements is subject to the means test (source: Nuffield Trust).

Social care public funding

In England Local Authorities (LAs) organise and fund social care for people who are eligible. The LAs are funded largely through a combination of a grant from central government and local revenue-raising mechanisms, including a tax on housing (council tax). Social care funding is not ring-fenced, which means that local authorities can decide how much of their budget they allocate to care.

The King’s Fund Social Care 360 annual report by Bottery et al., (2022) provides a useful overview on public funding for social care in England. Between 2018/19 and 2019/20, total spending on adult social care increased by 2.2 %. In 2019/20, gross social care spending through LAs was £23.3 billion. Of this, £7.5 billion was spent on long-term support for working-age adults (£2.5 billion on nursing or residential care, £451 million on supported accommodation and £4.6 billion on community support, including home care). They also spent £159 million on short-term support for working-age adults. Spending for long-term support for older people was £7.9 billion (£5 billion on nursing or residential care, £121 million on supported accommodation and £2.7 billion on community support, including home care). They also spent £450 million on short-term support for older people (Bottery et al., 2022).

During the last decade, funding to councils has been cut by almost 50% (source: National Audit Office), which has put pressure on councils to spend less on care either through reducing the rates they pay providers or by reducing the number of people they fund. Because local authorities have a responsibility to raise revenue locally to subsidise the grant they receive from national government, those local authorities in more affluent areas are able to raise more (source: Institute for Fiscal Studies). The result is wide variation in the eligibility for care between local areas, despite the intention of the Care Act (2014) being to standardise eligibility.

References:

Bottery, S., Ward, D. (2022) Social Care 360. The King’s Fund. https://www.kingsfund.org.uk/publications/social-care-360

Wittenberg, R, Knapp, M, Hu, B, et al. (2019) The costs of dementia in England. Int J Geriatr Psychiatry. 34: 1095– 1103. https://doi.org/10.1002/gps.5113

Update for: England (UK)   Last updated: March 8th, 2022   Contributors: Joanna Marczak  |  Adelina Comas-Herrera  |  

1.03. Long-term care financing arrangements and coverage

Principal responsibility for providing services to social care clients falls on Scotland’s 32 local authorities. For home care, each local authority has their own charging policy which, together with a financial assessment of the persons income, will determine how an individual contributes towards their care services. Since 2002, anyone in Scotland aged 65 and over, whether living at home or in a care home is entitled to Free Personal and Nursing Care if they need it.

Before entering a care home, the local authority will carry out needs assessment and a financial assessment to work out what care the individual needs and how much they need to pay towards the care home fees and services. The amount a person will have to pay depends on if they fall above or below the capital limits (lower limit £18,000 and upper limit £28,750 as of April 2021) (Source: Care Information Scotland, Capital limits). Care home residents who have capital above the upper limit are classed as self-funders and those who have capital falling below the lower limit are funded by their local authority. Those whose capital lies in between the upper and lower limits receive some help from the local authority and fund the remainder themselves. However, Free Personal and Nursing Care in a care home means that self-funders who are aged 65+ receive a weekly payment towards their personal care (£193.50 as of 1st April 2021). Any self-funder in need of nursing care will also receive a weekly payment towards the cost of that care (£87.10 as of 1st April 2021). Finally, those who are funded by the local authority will receive personal care for free (Source: Care Information Scotland).

Update for: Scotland (UK)   Last updated: March 10th, 2022   Contributors: Jenni Burton  |  David Bell  |  Elizabeth Lemmon  |  David Henderson  |  

1.04. Approach to care provision, including sector of ownership

Care is provided by approximately 9,000 home care providers and over 15,000 care home providers. Around 78% of all adult care services are privately owned and run (ICF, 2017). The Care Act 2014 places a duty on local authorities to ensure that there is diversity and quality in the market of care providers. However, due to the downward pressure on fees stemming from cuts to local authority budgets, many providers find that the fees paid by local authorities fall short of covering the full costs of providing care. People who fund their own care are being charged on average 41% more than local authority funded residents because of this shortfall (CMA 2018). It is increasingly common for care providers to go out of business, struggle to stay in business, or hand back contracts to local authorities. A survey in 2019 found that some 75% of councils reported that organisations had either closed or handed back contracts in the last six months of 2020, creating enormous disruption and discontinuity for those receiving care (ADASS, 2019).  Because of market fragility, the government has introduced market oversight and a failure regime covering financial as well as quality failure (source: CQC).

References:

ADASS (2019). ADASS Budget Survey. Association of Directors of Adult Social Services

CMA (2017). Care homes market study. Competition and Market Authority

ICF (2018). The Economic Value of the Adult Social Care sector – England. ICF Consulting Limited, London

Update for: England (UK)   Last updated: March 8th, 2022

1.04. Approach to care provision, including sector of ownership

Care at home is either provided by the local authority, the health board (in the case of NHS Highland), by private firms or voluntary/not for profit firms. According to data collected by the Care Inspectorate, as of 31^st March 2020, of the 1,046 registered care at home for adults’ services, 495 (47%) were run by voluntary or not for profit organisations, 406 (39%) by private firms, 136 (13%) by the local authority and in NHS Highland 9 (<1%) care at home services were provided by the health board (Source: Care Inspectorate).

Within the care home setting, ownership types are the same but unlike care at home, in Scotland most care homes are privately owned. Specifically, as of March 2020, 680 (63%) of care homes for adults were privately owed. The remainder were owned by voluntary or not for profit organisations (24%), local authorities (12%) and the Health Board (1%).

Update for: Scotland (UK)   Last updated: March 8th, 2022   Contributors: Jenni Burton  |  David Bell  |  Elizabeth Lemmon  |  David Henderson  |  

1.05. Quality and regulation in Long-term care

The Care Quality Commission (CQC) is an executive non-departmental public body of the Department of Health and Social Care and serves as the independent regulator for both health and long-term care.

Update for: England (UK)   Last updated: March 8th, 2022

1.05. Quality and regulation in Long-term care

The Care Inspectorate is the regulatory body charged with ensuring that high care standards are met in Scotland. It carries out regular, unannounced inspections of Scottish care homes. Where care fails to meet the expected standards, the Care Inspectorate work with the provider to suggest how improvements in care quality can be made. If a provider fails to improve quality sufficiently, the Care Inspectorate have the authority to close the service down, subject to the decision of a sheriff.

Update for: Scotland (UK)   Last updated: February 10th, 2022   Contributors: Jenni Burton  |  David Bell  |  Elizabeth Lemmon  |  David Henderson  |  

1.06. Care coordination

There is a clear policy drive towards integrated care in England. Health care has traditionally been coordinated through local National Health Service (NHS) planning and provider organisations, which are accountable to the national government. In contrast, social care contrast is under the responsibility of local authorities, which have their own governance structures and are accountable to elected local governments. Local authorities can make their own decisions about implementation and funding allocation. Since the late 1990s to 2010 the government focused on the structural elements of partnership through multiple policy reforms. A review of progress in that period concluded that there was insufficient attention to supporting joint working through building relationships and trust (Glasby et al, 2011).

Since 2010, England introduced initiatives to encourage better integration between health and social care, building on previous efforts to improve partnerships between the two sectors. A study by Miller et al. (2020) reviewing progress on integrated health and social care in England from 2010 to 2020 has concluded that a focus on locally relevant and specific tasks or issues has resulted in the greatest progress. Broader ill-defined goals and constant policy changes are not helpful (Miller et al, 2020).

Lewis et al., (2021) conducted a review of the findings from three key integration pilot programmes (Integrated Care Pilots, Integrated Care and Support Pioneers, and New Care Model ‘Vanguards’ highlights the challenges of identifying the objectives of integrated care). All three programmes shared the aim of improving coordination between hospital and community-based health services and between health and social care. However, over time, the NHS narrowed the lens used to evaluate their success to impact on reducing unplanned hospital admissions, which led to a diminished role for local authorities and voluntary sector partners. The evaluations of the pilots show that integration is a long-term project and that reductions in unplanned hospital admissions are not necessarily the best way to measure success (Lewis et al, 2021).

The NHS Long Term Plan published in 2019 announced Integrated Care Systems (ICS) everywhere by April 2021, bringing together local organisations to deliver a ‘triple integration’ of primary and specialist care, physical and mental health services, and heath and social care. These ICSs are rooted in the NHS, with the expectation that local authorities, the voluntary sector and others will partner with them.

The plan also includes the expansion of the Enhanced Health in Care Homes model to the whole country by 2023/4 to strengthen links between primary care networks and care homes.

The Plan announces support for local approaches to blending health and social care budgets and that a forthcoming green paper on adult social care will set out further proposals for social care and health integration.

References:

Glasby J, Dickinson H, Miller R. Partnership working in England – where we are now and where we’ve come from. International Journal of Integrated Care. 7 March 2011; 11: 1–8. DOI: https://doi.org/10.5334/ijic.545.

Lewis, R. Q., Checkland, K., Durand, M. A., Ling, T., Mays, N., Roland, M., & Smith, J. A. (2021). Integrated Care in England – what can we Learn from a Decade of National Pilot Programmes?. International Journal of Integrated Care, 21(S2), 5. DOI: http://doi.org/10.5334/ijic.5631

Miller, R., Glasby, J., & Dickinson, H. (2021). Integrated Health and Social Care in England: Ten Years On. International Journal of Integrated Care, 21(S2), 6. DOI: http://doi.org/10.5334/ijic.5666

Update for: England (UK)   Last updated: March 8th, 2022   Contributors: Adelina Comas-Herrera  |  Chris Hatton  |  

1.06. Care coordination

Anyone who is eligible to receive social care services in Scotland has the option of choosing Self-Directed Support for their care. Self-Directed Support was introduced in Scotland in April 2014. This option gives individuals greater control over how they receive their care and allows them to personalise their care in a way that suits them. A Public Health Scotland report on social care estimated that in 2018/19, around 79.4% people used self-directed support to make choices about their care (Source: Insights in Social Care: Statistics for Scotland). However, an Audit Scotland report suggested that the accuracy of data regarding self-directed support required improvement (Source: Self-directed support: 2017 progress report).

Update for: Scotland (UK)   Last updated: March 10th, 2022   Contributors: Jenni Burton  |  David Bell  |  Elizabeth Lemmon  |  David Henderson  |  

1.07. Information and monitoring systems 

There is no national minimum dataset for care homes, or social care in England. During the pandemic, the limited existing data was supplemented by data collections from several bodies (the NHS, providers themselves, the death registration system, Public Health England, and the Care Quality Commission (CQC)). Those working in the sector report that this has led to repeated collection of similar data, by multiple stakeholders. This reflects the lack of data and technology infrastructure in the social care sector, which by comparison with the health care sector in England and Wales, has received little investment.

The COVID-19 crisis has stimulated some technological innovation in care homes, for example, the NHS has expanded the use of encrypted NHS emails to care home staff, developed a web portal for Personal Protection Equipment (PPE) emergency procurement, and has piloted ‘remote’ social care interventions. Some care homes and General Practices (GP) have also used tablets and video calling to allow GP visits and to communicate with families. The digital lifeline initiative during the COVID-19 crisis enabled over 5,000 adults with intellectual disabilities in England to receive internet-enabled devices, with data and local support to help people learn how to use their device, with promising impact in the short term. However, this is in the context of fundamental issues with capacity of the care home sector to engage in these initiatives due to a lack of infrastructure (e.g. broadband), or low usage of digital technology among home care staff (Digital Lifeline Fund, 2021)

At a provider and individual level, data and information sharing are limited. There have been several successful partnerships between the health and local authority sector across England to link social care data collected by councils with health care data. However, this only covers people whose social care provision is provided by local authorities, not those who pay themselves. There are no national datasets on social care utilisation or individual expenditure and the complex and fragmented nature of the provider market makes data collection difficult. The development of the Capacity Tracker (Source: About Capacity Tracker for care homes, mandated during Covid-19, is a welcome addition with potential to provide market intelligence, although there are concerns about the accuracy of data entered, with implications for planning and prioritisation in central government (Source: LaingBuisson). It remains impossible to obtain an accurate estimate of the number of self-funders or total social care spend across all care settings (Source: Adult social care statistics: the potential for change).

References: 

Digital Lifeline Fund, (2021). DCMS Digital Lifeline Fund: Interim Report

Burton, J., Goodman, C., Quinn, T. (2020). The invisibility of the UK care home population – UK care homes and a minimum dataset. LTCcovid.org

Update for: England (UK)   Last updated: March 10th, 2022   Contributors: Chris Hatton  |  Nina Hemmings  |  

1.08. Care home infrastructure

Number of care homes and beds

The Office for National Statistics estimated that, between 2019 and 2020, there were 462,460 care home beds in England. Of these, 84.7% (391,927) were occupied. 36.7% of residents were self-funders (paid for their care privately). The Care Quality Commission (CQC) reported that occupancy levels fell during the pandemic, reaching a low of 80% during the summer of 2020.

The Future Care Capital estimated that in 2019 there were 15,661 care homes. Their report found that the number of registered care home beds has declined over time and that, at the same time, there has been a shift towards larger care homes, with the average size of care homes increasing from 26.8 beds in 2014 to 29.2 in 2019. Similarly, Kings Fund report indicated that number of care home places declined between  2012 and 2020, care home places declined from from 11.3 to 9.6 and nursing home places from 5.2 to 4.7 for every 100 people over the age of 75. There report also noted that there was a lot of regional variation.

Sector of ownership and quality

In terms of market composition, the Future Care Capital report estimated that, in 2019, 83.4% of care homes were private for-profit, 2.8% were public and 13.6% were not-for-profit. In 2019, just under 17% of all care home beds were owned by the five largest groups of providers. Quality of care,  is highest among not-for-profit providers, with 16.4% inadequate or requiring improvement by the CQC, compared to 24.8% for private companies. Care homes with fewer than 30 beds tended to be rated better than larger care homes.

Update for: England (UK)   Last updated: March 2nd, 2022   Contributors: Adelina Comas-Herrera  |  

1.08. Care home infrastructure

Community support services for people living with dementia

A survey of people living with midl-to-moderate dementia and their care partners in Britain found low rates of receipt of dementia support services, with people who were female, older, and with lower education level receiving fewer services (van Horik et al, 2022).

References

van Horik J.O., Collins R., Martyr A., Henderson C., Jones R.W., Knapp M., Quinn C., Thom J.M., Victor C., Clare L., on behalf of the IDEAL Programme Team (2022) Limited receipt of support services among people with mild-to-moderate dementia: Findings from the IDEAL cohort. International Journal of Geriatric Psychiatry. 37(2). https://doi.org/10.1002/gps.5688

Update for: England (UK)   Last updated: March 21st, 2022   Contributors: Adelina Comas-Herrera  |  

1.10. Workforce conditions: pay, employment conditions, qualification levels, shortages

Overview

Currently, there is no national workforce strategy for the adult social care workforce – the last strategy was published by government over a decade ago in 2009. Proposals on workforce reforms are expected to be outlined in two forthcoming white papers, on adult social care reform and health and social care integration, respectively (Source: Build Back Better: Our Plan for Health and Social Care).

Social care vacancies

On average in 2020/21, 6.8% of posts were vacant in the English social care sector, equivalent to 105,000 at any one time (Skill for Care, 2021). Overall, data indicate that the staff vacancy rate in social care in  2020/21 was much higher compared to 2014/15 and that pay could be a factor, as although pay has increased in the same period of time, the increase has not kept pace with other sectors (Bottery et al., 2022).

Working conditions and pay

Data indicate that the sector suffers from high staff turnover, poor working terms and conditions, and 24% of the workforce are on zero-hours contracts. Pay levels are low compared to other competing sectors such as retail and hospitality. The national minimum wage has increased in recent years and is set to rise to £9.50 per hour as of April 2022. While this is positive for entry-level staff, there has been no parallel action to boost the pay of more experienced staff with 5 or more years of experience. As a result, the pay differential between junior and more senior care workers has narrowed to an average of 6 pence per hour by March 2021. There are few opportunities for training and progression, with data on qualification levels indicating only 45% of direct care-providing staff in 2020/21 held a relevant adult social care qualification (Bottery et al., 2022).

The adult social care workforce is reliant on migrant labour. It was reported that in total, an estimated 98,710 migrant workers joined the formal care workforce between 2009 and 2019, with 9% from EU and 11% from non-EU countries (Dayan et al., 2019).  In London, more than two in five care workers are from abroad. However, under the new points-based immigration system introduced on 1st January 2021, care workers have not been recognised as eligible for the ‘skilled worker’ route (Source: UK points-based immigration system: further details statement). As a result, the number of new entrants to the social care sector from abroad fell from 5% in 2019 to fewer than 2% in the spring of 2021 (Skills for Care, 2021). To release the recruitment pressures, in December 2021, the government  announced that care workers, care assistants and home care workers will be added to the Shortage Occupation List as part of the health and care visa to make it quicker, cheaper and easier for social care employers to recruit eligible workers to fill employment gaps (see section 3.06 of this report for more details).

References: 

Bottery, S., Ward, D. (2022). Social Care 360. The King’s Fund. https://www.kingsfund.org.uk/publications/social-care-360

Dayan, M., Palmer, B. (2019). Stopping the staff we need? Migration choices in the 2019 general election. Nuffield Trust Election briefing

Skills for Care (2021). The state of the adult social care sector and workforce in England 2021.

Update for: England (UK)   Last updated: March 8th, 2022   Contributors: Joanna Marczak  |  Nina Hemmings  |  Chris Hatton  |  

1.10. Workforce conditions: pay, employment conditions, qualification levels, shortages

The Scottish Social Service Council (SSSC) has a statutory duty to keep a register of workers in social services including care homes, care at home and housing support services. It is possible for an individual to appear in more than one category covered in the SSSC register but the most recent data suggests there were 36,661 non-managerial registrants working in care homes, 58,016 non-managerial registrants working in the care at home sector, and 49,295 non-managerial registrants working in the housing support sector.

Update for: Scotland (UK)   Last updated: March 10th, 2022   Contributors: Jenni Burton  |  David Bell  |  Elizabeth Lemmon  |  David Henderson  |  

1.11. Role of unpaid carers and policies to support them

Prevalence

It has been estimated that around 5 million carers provide informal support to older people in England (Brimblecombe et al., 2016, Wittenberg, 2017). Considering the population ageing and increasing numbers of people with LTC needs, it has been projected that by 2035 the country will need additional 2.3 million of unpaid carers (Brimblecombe et al., 2016).

Policies to support unpaid carers

A number of policy changes have been introduced over the last decade that aim to support carers, and which focus on supporting carers directly (e.g. recognition of carers assessment, cash for carers, pension rules) as well as supporting people with needs, and thus carers indirectly. Perhaps the most important law for the last sixty years reforming the social care system, including carers’ related policies, was The Care Act 2014.  The statute  enhanced recognition of legal status of carers, it provided carers with new rights to receive needs assessment regardless of the eligibility to public support by the person they care for, and regardless of the intensity of the care provided. It also  clarified their entitlements to public support. The Care Act highlighted that  local authorities must promote carers’ wellbeing , they must provide information and advice to carers as well as support carers if they want to remain in employment (Marczak et al. 2017; Marczak et al. 2021).

Services for carers

The Care Act 2014,  specified that English local authorities have a legal duty to provide support to meet carers’ eligible needs (HM Government, 2014). Indeed, a recent King’s Fund report illustrated that more carers have received support in 2020/21 relative to 2015/16, although most carers receive information, advice or such universal services as signposting, conversely in the same period fewer carers received paid support such as personal budgets.

Cash benefits

Unpaid carers in England are eligible to claim cash benefits such as Carers Allowance, which is  not means-tested, eligibility depends on various criteria, including a that the carer provides at least 35 hours of care per week. As of February 2022, the allowance was £67.60 weekly.  Informal carers in receipt of Carer’s Allowance automatically get National Insurance credits which can help them to build towards their state pension (source: Carer’s Allowance – GOV.UK).

References: 

Brimblecombe, N. Fernandez, JL, Knapp, M., Rehill A. Wittenberg, R. (2016) Unpaid Care in England: Future Patterns and Potential Support Strategies. PSSRU Discussion Paper. London: EShCRU at LSE.

Marczak, J. Fernandez, JL, Wittenberg, R. (2017). The English policy landscape. CEQUA LTC Network

Marczak, J. Fernandez. JL, Manthorpe, J. Brimblecombe, N. Moriarty, J.  Knapp,M, Snell, T. (2021) How have the Care Act 2014 ambitions to support carers translated into local practice? Findings from a process evaluation study of local stakeholders’ perceptions of Care Act implementation. Health and Social Care in the Community https://doi.org/10.1111/hsc.13599 

Wittenberg, R. (2017) Long-term care for older people in England. In: MASIERO, S. & CARRARO, U. (eds.) Rehabilitation Medicine for Elderly Patients | SpringerLink

Update for: England (UK)   Last updated: March 3rd, 2022   Contributors: Joanna Marczak  |  

1.12. Personalisation, user voice, choice and satisfaction

In Scotland 80% of the care workforce work for organisations represented by Scottish Care; a membership-based organization that provides support, training and advocates for the predominantly private workforce.

Update for: Scotland (UK)   Last updated: February 10th, 2022   Contributors: Jenni Burton  |  David Bell  |  Elizabeth Lemmon  |  David Henderson  |  

2.01. Impact of the COVID-19 pandemic on the country (total population)

National Records of Scotland (NRS) publish weekly figures on death registrations where COVID-19 was mentioned on the death certificate as either confirmed COVID-19 or suspected COVID-19. According to this data, as of the 28^th November 2021, there have been 12,127 deaths where COVID-19 was mentioned on the death certificate.

Update for: Scotland (UK)   Last updated: March 8th, 2022   Contributors: Jenni Burton  |  David Bell  |  Elizabeth Lemmon  |  David Henderson  |  

2.02. Deaths attributed to COVID-19 among people using long-term care

COVID-attributed deaths among care home residents

The Office for National Statistics (ONS) provide weekly updates of deaths registered in England, which include any death where COVID-19 was mentioned on death certificates.

In wave 1 (up to September 2020), ONS  data shows that there were 19,783 registered deaths attributed to COVID-19 among care home residents in England, and 20,388 in wave 2 (from 12 September 2020 to 2 April 2021). Due to constraints in testing during the first wave, the ONS data shows that during wave 1 there around 26,087 more deaths in the period of the first wave compared to the average number of deaths observed on the same dates in the previous five years. In contrast, during the second wave, when care homes had much better access to testing, excess deaths amounted to 1,145. It is important, as ONS point out, to interpret excess deaths with caution, particularly in wave 2, as occupation rates in care homes were lower and the population that survived wave 1 is likely to be younger and healthier.

Between 3rd April 2021 and 14th April 2022, based on data from the ONS, we calculate that there were 4,658 COVID-attributed deaths registered among care home residents in England. This brings the cumulative number of deaths of care home residents registered as attributed to COVID since the beginning of the pandemic to 44,829. This figure does not include deaths that may have been due to COVID but not identified as such (particularly at the beginning of the pandemic when care homes had little access to tests). The total number of registered deaths attributed to COVID-19 in England IS 176,004 (Source: ONS).

According to ONS estimates, between 2019 and 2020 there were 391,027 people living in care homes in England. Therefore, the number of COVID-19 related deaths of care home residents represents 11.25% of the population in care homes when the pandemic started.

In July 2021, the Care Quality Commission published care home level data on deaths notifications involving COVID-19 for the period from April 10, 2020, to March 31, 2021. In total, the Care Quality Commission had been notified of 39,017 deaths in that period that took place in 6,765 care homes.

COVID-attributed deaths among people who use home care

Data on people who use home care is available through the ONS for the period up to 2nd April, by then the deaths of 2,226 people who used home care had been linked to COVID-19.

Deaths linked to COVID-19 among people living with intellectual disabilities

Multiple studies using data sources have reported higher COVID-19 mortality rates among adults with intellectual disabilities in England. An analysis of notifications of deaths of people with intellectual disabilities to the LeDeR programme up to 5 June 2020 reported an estimated COVID-19 mortality rate of 3.6 for adults with intellectual disabilities compared to the general population. The ONS linked primary care record data to death certificate data from 24 January to 20 November 2020, reporting age-standardised mortality hazard ratios for COVID-19 of 3.5 for men with intellectual disabilities and 4.0 for women with intellectual disabilities aged 30+. Controlling for residence type (private household, care home and other communal establishments) reduced these COVID-19 mortality hazard ratios to 2.1 for men and 2.2 for women. A further analysis linking primary care record data (using a less expansive set of codes for intellectual disability than the ONS analysis) to death certifications reported a COVID-19 mortality hazard ratio of 8.2 for adults with intellectual disabilities aged 16+ between 1 March and 31 August 2020; and 7.4 between 1 September 2020 and 8 February 2021 (Williamson et al., 2021).

Deaths linked to COVID-19 among people living with dementia

According to ONS estimates, around half of all COVID-19-attributed deaths among care-home residents in England and Wales between March 2020 and April 2021 (waves 1 and 2), were people who were known to have with dementia.

References:

Williamson, et al, (2021). OpenSAFELY: Risks of COVID-19 hospital admission and death for people with learning disabilities – a cohort study. BMJ doi: https://doi.org/10.1101/2021.03.08.21253112 

Update for: England (UK)   Last updated: May 3rd, 2022   Contributors: William Byrd  |  Disha Patel  |  

2.02. Deaths attributed to COVID-19 among people using long-term care

The Northern Ireland Statistics and Research Agency publish data on deaths, including those where COVID-19 (suspected or confirmed) is mentioned on the death certificate.

As of March 5, 2021, there had been 2,839 COVID-19 related deaths, with 762 of these occurring in care homes (27%). Furthermore, there had been 997 COVID-19 related deaths of care home residents. Therefore as of Wave 2 care home residents accounted for 35% of all COVID-19 related deaths in Northern Ireland.

As of April 15, 2022, there have been 4,519 deaths COVID-19 related deaths of which 1,270 (28%) were care home residents. 968 deaths have occurred within care homes. There are 14,935 care home residents in Northern Ireland. Therefore, the number of COVID-19 related deaths of care home residents represents 8.5% of this population.

Update for: Northern Ireland (UK)   Last updated: May 3rd, 2022   Contributors: William Byrd  |  Disha Patel  |  

2.02. Deaths attributed to COVID-19 among people using long-term care

Since May 25, 2020, the Care Inspectorate Scotland (CIS) has reported weekly data on notifications of deaths of care home residents. Care homes are required to note whether COVID-19 was noted as confirmed or suspected on the death certificate.

As of April 24, 2022, the Scottish Government has reported 14,332 deaths where COVID-19 was mentioned on the death certificate. As of the same date, CIS has reported 4,726 deaths of care residents of suspected or probable COVID-19, accounting for 33% of total deaths. 4,151 deaths were reported to have occurred within care homes. Assuming that the number of adult care home residents has remained stable since 2017 (based on Care Home Census for Scotland, 35,898 adults receiving care in care homes in March 2017) the number of COVID-19 related deaths of care home residents represents 13.17% of this population.

At present, the authors are not aware of any publicly available data to identify if any care home staff died because of COVID-19.

With respect to social care provided at home, the authors are not aware of any data to identify if those receiving or providing care at home have died because of COVID-19.

Deaths linked to COVID-19 among people with learning disabilities:

A nationwide data linkage study in Scotland comparing all COVID-19 confirmed deaths of people with learning disabilities from 24 January to 15 August 2020 with a 5% sample of adults without learning disabilities reported a Standardised Mortality Ratio (SMR) of 3.20. SMRs were particularly high for people with learning disabilities aged 18-54 (SMR 6.62) and 55-64 (SMR 16.16) (Henderson A. et al. 2021).

References: 

Henderson, A. et al. (2021) COVID-19 infection and outcomes in a population-based cohort of 17,173 adults with intellectual disabilities compared with the general population. BMJ doi: https://doi.org/10.1101/2021.02.08.21250525

Update for: Scotland (UK)   Last updated: May 3rd, 2022   Contributors: Chris Hatton  |  Disha Patel  |  Jenni Burton  |  David Bell  |  Elizabeth Lemmon  |  David Henderson  |  

2.02. Deaths attributed to COVID-19 among people using long-term care

The Welsh Government publishes data collated by the Care Inspectorate Wales (CIW) at the Local Authority level of the number of notifications of deaths of adult care home residents by cause and location of death.

As of April 8, 2022, data published by the UK Health Security Agency there have been 10,797 deaths with COVID-19 on the death certificate. As of the same date, the CIW reported 2,163 Covid-19 related deaths (both confirmed and suspected) of care home residents in Wales. Therefore, care home resident deaths account for 25.6% of COVID-19 related deaths in Wales. Of these care home resident deaths, 1,477 (68%) occurred within care homes. There are 24,178 care home residents in Wales. Therefore, the number of COVID-19 related deaths of care home residents represents 8.95% of this population.

Data published by the Office of National Statistics showed that as of March 12, 2021, there had been 7,717 COVID-19 related deaths, with 1,650 of these occurring in care homes (21%). As of the same date, according to CIW data, there had been 1,911 COVID-19 related deaths of care home residents. Therefore, care home residents accounted for 25% of all COVID-19 related deaths in Wales at this point during Wave 2. (Source: https://gov.wales/notifications-care-inspectorate-wales).

A nationwide study in Wales compared certified COVID-19 deaths of people with learning disabilities identified through inpatient services and all Welsh resident COVID-19 deaths, from 1 March to 19 November 2020. This reported a Standardised Mortality Ratio (SMR) of 4.60 for people with learning disabilities compared to all Welsh residents; this was particularly high for people aged under 60 (SMR 12.7) (Watkins, 2021).

References:

Watkins, A. (2021). COVID-19-related deaths in Wales amongst People with Learning Disabilities from 1st March to 19th November 2020.  Improvement Cymru

Update for: Wales (UK)   Last updated: May 3rd, 2022   Contributors: William Byrd  |  Chris Hatton  |  Adelina Comas-Herrera  |  Disha Patel  |  

2.03. Impact of long COVID among people who use Long-Term Care

It is reported from a survey conducted by the Office of National Statistics (ONS) that about 1.3 million people in the UK have “long COVID” symptoms lasting more than four weeks after an initial infection (ONS, 2022). Of those, 892,000 (70%) first caught the virus at least 12 weeks ago and 506,000 (40%) at least a year ago (ONS, 2022). Some caution is needed as the estimates relate to self-reported symptoms via a survey rather than a clinical diagnosis although for some respondents this might be the case and included only those living in private households and would not include any individuals living in any type of long-term care home setting.

In the UK, there are now established pathways and centres, some 89, for referring patients who are diagnosed as experiencing long-COVID symptoms (NHS, 2021). However, it is unclear if any care home residents are referred to these services since the majority of services are often located in urban settings linked to existing services and are often not easily accessible for those requiring ongoing support needs, such as a carer present. A plethora of studies has been undertaken on numerous aspects of the pandemic on care homes settings (see, LTCcovid database for details). However, we are not aware of studies directly relating to the management of resident symptoms, referral or access to the rehabilitation pathways or if indeed residents are recognised as having long COVID symptoms. This needs to be addressed. We are aware of current work been undertaken, led by Gordon et al., (2022), that is exploring the current rehabilitation pathways which will be considering the pathways for all patients including those living in care home settings.

References:

Gordon, A. et., al. (2022) Protocol: Long-COVID syndrome: understanding how rurality influences design and development of pathways for delivery of sustainable care. Exploratory study in one geographic region.

Office of National Statistics (ONS) (2022) Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK : 3 February 2022

NHS (2021)  Long COVID: the NHS plan for 2021/22 . Accessed 08/02/2022

NICE (2022). COVID-19 rapid guideline: managing the long-term effects of COVID-19.  Version 1.14 accessed 11/03/2022

Royal College of Nursing (RCN) (2021). Long COVID: what do we know? Retrieved from: https://www.rcn.org.uk/magazines accessed 11/03/2022

Update for: United Kingdom   Last updated: March 11th, 2022   Contributors: Dr Kathryn Hinsliff-Smith  |  

A survey by the Office for National Statistics estimated that, over the four-week period ending March 6, 2021, 1.1 million people in private households in the UK were experiencing long COVID (defined as symptoms persisting more than four weeks after the first suspected coronavirus (COVID-19) episode that are not explained by something else). Approximately 62% of people with self-reported long COVID reported at least some limitation to their day to day activities and about 18% that their day to day activities had been limited a lot. While these estimates are equivalent to a prevalence rate of 1.7% for the whole population living in private households, the prevalence among health and social care workers is much higher: 3.6% and 3.1% respectively. There is no information yet on long COVID among people with LTC needs.

Update for: United Kingdom   Last updated: January 2nd, 2022

2.04. Impacts of the pandemic on access to care for people who use Long-Term Care

Impact on access to health and social care services for adults with learning disabilities

UK-wide interviews with approximately 500 adults with learning disabilities and surveys with approximately 300 family carers and support workers of adults with learning disabilities who could not take part in an interview at three time points during the pandemic have reported that access to a wide wide range of health services (including primary care, more specialist therapists, and annual health checks) significantly reduced from before the pandemic to the lockdown in the winter of 2020. Access has improved since then up to the summer of 2021, but not to pre-pandemic levels, with more consultations being conducted by phone rather than face to face.

The picture is similar concerning access to a wide range of social care services, including day services, community activities and short breaks, with the exception of support at home which has continued at consistent levels through the COVID-19 pandemic. Reduced access to many health and social care services was evident for a greater proportion of adults with learning disabilities with greater needs, particularly adults with profound and multiple learning disabilities.

Update for: United Kingdom   Last updated: March 8th, 2022   Contributors: Chris Hatton  |  

2.04. Impacts of the pandemic on access to care for people who use Long-Term Care

Omicron wave: workforce shortages

The rapid spread of the Omicron variant has had a drastic impact on the ability of services to continue to operate due to very high rates of staff sickness. A survey of members of the National Care Forum (the largest body representing not-for-profit care providers) released on the 13th January 2022 found that 66% of homecare providers responding are having to refuse new requests for home care, 43% of providers of care homes are closing to new admissions and 21% of home care providers are handing back existing care packages as they are unable to fulfil them. The providers reported an 18% vacancy rate and 14% absences as a result of Omicron.

Also on the 13th January 2022, the Association of Directors of Adult Services reported that 49 out of 94 councils that answered a questionnaire reported taking measures to prioritise care to support the most basic tasks only (eating, drinking and going to the toilet, but not help with tasks such as getting out of bed) and having to leave people with learning disabilities, dementia or mental illness alone for longer than usual. A survey of members of the National Care Forum (the largest body representing not-for-profit care providers) found that 66% of homecare providers responding are having to refuse new requests for home care, 43% of providers of care homes are closing to new admissions and 21% of home care providers are handing back existing care packages as they are unable to fulfil them.

Previous waves of the pandemic:

In the initial part of the pandemic carers reported delays in health treatment for the person they care for (57%) and for themselves (38%). More than half of carers (65%) in a Carers UK survey carried out in September 2020 reported to have postponed attending health care services for their own health needs. Reduced access to health care and social services for the person they support was also reported by carers of people with dementia (90% of 795 respondents)(Source: Alzheimers.org).

Many community–based care services, such as day care, were interrupted as a result of the COVID-19 pandemic. Guidance on safe delivery of day care has been published by the Social Care Excellence Institute on the July 10, 2020.

It is likely that there have been reductions in the use of domiciliary care services, such as home care, as a result of people fearing contagion through contact with staff, and as a result of staff shortages due to their own need to self-isolate or shield. Lack of access to PPE and testing for home care providers may have exacerbated this problem. There is no data yet on the extent to which services have been reduced or the degree to which this has affected the people who rely on those services and their family and other unpaid carers, although a national survey by the Association of Directors of Adult Services reported substantial increases in social care need arising from the unavailability of services, hospital discharge, carer breakdown, and concerns about abuse and safeguarding.

Impact on access to health care for people with dementia

In the earlier part of the pandemic there were reports of people living with dementia who had COVID being refused hospital treatment based on their dementia diagnosis and not their ability to benefit from treatment, and of people with dementia living in care homes being pressured into signing “Do Not Attempt Ressusciation” (DNAR), prompting the Alzheimer’s Society and 4 leading charities to send an open letter to the health secretary (Suarez-Gonzalez et al., 2020).

Impact on access to health and social care services for adults with intellectual disabilities

UK-wide interviews with approximately 500 adults with intellectual disabilities and surveys with approximately 300 family carers and support workers of adults with intellectual disabilities who could not take part in an interview, at three time points during the pandemic, have reported that access to a wide range of health services (including primary care, more specialist therapists, and annual health checks) significantly reduced from before the pandemic to the lockdown in the winter of 2020. Access has improved since then up to the summer of 2021, but not to pre-pandemic levels, with more consultations being conducted by phone rather than face to face.

The picture is similar concerning access to a wide range of social care services, including day services, community activities and short breaks, with the exception of support at home which has continued at consistent levels through the COVID-19 pandemic. Reduced access to many health and social care services was evident for a greater proportion of adults with intellectual disabilities with greater needs, particularly adults with profound and multiple intellectual disabilities (Flynn et al., 2021).

In England, national statistics on local-authority funded social care reported that 1,500 fewer adults with learning disabilities were receiving long-term social care at the end of March 2021 compared to the end of March 2020, reversing a long-term trend of increasing numbers of adults with learning disabilities receiving long-term social care.

References:

Suarez-Gonzalez A., Livingston G., Comas-Herrera A. (2020) Report: The impact of the COVID-19 pandemic on people living with dementia in UK, 3rd May 2020. https://ltccovid.org/2020/05/03/report-the-impact-of-the-covid-19-pandemic-on-people-living-with-dementia-in-uk/ 

Update for: England (UK)   Last updated: March 6th, 2022   Contributors: William Byrd  |  Chris Hatton  |  Adelina Comas-Herrera  |  

2.04. Impacts of the pandemic on access to care for people who use Long-Term Care

Impact on access to health and social care services for adults with intellectual disabilities

UK-wide interviews with approximately 500 adults with intellectual disabilities and surveys with approximately 300 family carers and support workers of adults with intellectual disabilities who could not take part in an interview, at three time points during the pandemic, have reported that access to a wide range of health services (including primary care, more specialist therapists, and annual health checks) significantly reduced from before the pandemic to the lockdown in the winter of 2020. Access has improved since then up to the summer of 2021, but not to pre-pandemic levels, with more consultations being conducted by phone rather than face to face.

The picture is similar concerning access to a wide range of social care services, including day services, community activities and short breaks, with the exception of support at home which has continued at consistent levels through the COVID-19 pandemic. Reduced access to many health and social care services was evident for a greater proportion of adults with intellectual disabilities with greater needs, particularly adults with profound and multiple intellectual disabilities.

Update for: Northern Ireland (UK)   Last updated: March 8th, 2022   Contributors: Chris Hatton  |  

2.04. Impacts of the pandemic on access to care for people who use Long-Term Care

In August 2020, the Health and Sport Committee of the Scottish Parliament ran a survey to collect views from people who provide, or receive, care and support at home. The survey covered the period 10 August 2020 to 7 September 2020. Over half of respondents stated that their care at home support either stopped completely (33%) or reduced (21%). Respondents reported that in many cases, family members had to step in to provide care. The closure of day centres and respite activities was reported as impacting those receiving care at home. Of those staff who responded to the survey, 61% reported that home care packages changed during the pandemic. Reasons reported included reduced provision of services, suspension and even cancellation of services (The Scottish Parliament, 2020).

Impact on access to health and social care services for adults with intellectual disabilities

UK-wide interviews with approximately 500 adults with intellectual disabilities and surveys with approximately 300 family carers and support workers of adults with intellectual disabilities who could not take part in an interview, at three time points during the pandemic, have reported that access to a wide range of health services (including primary care, more specialist therapists, and annual health checks) significantly reduced from before the pandemic to the lockdown in the winter of 2020. Access has improved since then up to the summer of 2021, but not to pre-pandemic levels, with more consultations being conducted by phone rather than face to face.

The picture is similar concerning access to a wide range of social care services, including day services, community activities and short breaks, with the exception of support at home which has continued at consistent levels through the COVID-19 pandemic. Reduced access to many health and social care services was evident for a greater proportion of adults with intellectual disabilities with greater needs, particularly adults with profound and multiple intellectual disabilities.

References:

The Scottish Parliament, (2020). How has Covid-19 impacted on care and support at home in Scotland?

Update for: Scotland (UK)   Last updated: March 8th, 2022   Contributors: Chris Hatton  |  Jenni Burton  |  David Bell  |  Elizabeth Lemmon  |  David Henderson  |  

2.04. Impacts of the pandemic on access to care for people who use Long-Term Care

Impact on access to health and social care services for adults with intellectual disabilities

UK-wide interviews with approximately 500 adults with intellectual disabilities and surveys with approximately 300 family carers and support workers of adults with intellectual disabilities who could not take part in an interview, at three time points during the pandemic, have reported that access to a wide range of health services (including primary care, more specialist therapists, and annual health checks) significantly reduced from before the pandemic to the lockdown in the winter of 2020. Access has improved since then up to the summer of 2021, but not to pre-pandemic levels, with more consultations being conducted by phone rather than face to face.

The picture is similar concerning access to a wide range of social care services, including day services, community activities and short breaks, with the exception of support at home which has continued at consistent levels through the COVID-19 pandemic. Reduced access to many health and social care services was evident for a greater proportion of adults with intellectual disabilities with greater needs, particularly adults with profound and multiple intellectual disabilities.

Update for: Wales (UK)   Last updated: March 8th, 2022   Contributors: Chris Hatton  |  

2.05. Impacts of the pandemic on the health and wellbeing of people who use Long-Term Care

Impacts on people living in care homes

A longitudinal qualitative study conducted in October and November 2020 and March 2021 found that family members and staff reported that residents were upset at the lack of visiting and deteriorating mental wellbeing and changes in behaviour. However, there was also an observation by staff that some residents appeared to be more settled without visits and with fewer social activities (Giebel et al., 2022).

Impacts on adults with learning disabilities

UK-wide interviews with approximately 500 adults with learning disabilities across the UK (Flynn et al. 2021) reported that in the four weeks before being interviewed in the summer of 2021: 13% of people said they often/always felt angry or frustrated, 15% often/always felt sad or down, 21% felt often/always worried or anxious, 12% often/always felt lonely with no-one to talk to, and 19% of people said they had a new or worsening health condition. Across all these indicators well-being had improved from previous interviews in winter 2020/21 and spring 2021. In the summer of 2021, 50% of adults with learning disabilities interviewed felt at least a little worried to leave the house – this was at a similar level to the winter of 2020/21, reversing an improvement in spring 2021.

The same project included surveys with approximately 300 family carers and support workers of adults with learning disabilities who could not take part in an interview. In the summer of 2021, family carers and support workers reported that 14% of people were often/always angry or frustrated in the four weeks before the survey, 12% of people were often/always sad or down, 25% of people were often/always worried or anxious, and 28% were reported to have had a new or worsening health condition in the four weeks before the survey.

References:

Flynn, S., Hayden, N., Clarke, L., Caton, S., Hatton, C., Hastings, R. P., Abbott, D., Beyer, S., Bradshaw, J., Gillooly, A., Gore, N., Heslop, P., Jahoda, A., Maguire, R., Marriott, A., Oloidi, E., Paris, A., Mulhall, P., Scior, K., Taggart, L., & Todd, S. (2021). Coronavirus and people with learning disabilities study Wave 3 Results: September 2021 (Full Report). Coventry, UK: University of Warwick. ISBN:978-1-871501-37-7

Giebel, C., Hanna, K., Marlow, P., Cannon, J., Tetlow, H., Shenton, J., Faulkner, T., Rajagopal, M., Mason, S. & Gabbay, M. (2022). Guilt, tears and burnout—Impact of UK care home restrictions on the mental well-being of staff, families and residents. Journal of Advanced Nursing, 00, 1– 12. https://doi.org/10.1111/jan.15181

Update for: United Kingdom   Last updated: February 21st, 2022   Contributors: Chris Hatton  |  

2.05. Impacts of the pandemic on the health and wellbeing of people who use Long-Term Care

People living in care homes

Guidance issued by the government on April 2, 2020, said that care homes should advise family and friends not to visit except in exceptional circumstances. There is concern and, increasingly, reported international evidence that some of the measures taken to reduce the risk of COVID-19 infections in care homes, such as closing care homes to visitors (including family members), reduction in social interactions and activities, and needing to isolate have had negative impacts on the wellbeing and mental health of people living in care homes (Comas-Herrera et al, 2020). There are multiple reports warning about the alarming rate of deterioration that people with dementia are experiencing under these isolating conditions and being detached from their families. For instance, a survey conducted by the charity Alzheimer’s Society found that 79% of care homes surveyed reported that the lack of social contact is causing a deterioration in the health and wellbeing of their residents with dementia. A survey of care homes from across England found that by late May and early June, 2020, 85% of managers had detected low mood among residents (Rajan et al, 2020).

People living in the community who use long-term care

There is emerging evidence that reduced use of social support services has had detrimental effects on the quality of life of people affected by dementia and older adults (Giebel et al, 2021).

In a study of community-dwelling adults with dementia and their carers by Rand et al. (2021), it was found that the later stages of COVID-19 restrictions in England (specifically, from reintroduction of the tier systems in 2^nd December 2020 until the end of the study in April 2021) were associated with poorer care-related quality of life outcomes when rated by proxy based on the proxy-person perspective (i.e. the proxy respondent’s rating based on their estimate of the person with dementia’s view).

Impacts on adults with intellectual disabilities

UK-wide interviews with approximately 500 adults with intellectual disabilities across the UK reported that in the four weeks before being interviewed in the summer of 2021: 13% of people said they often/always felt angry or frustrated, 15% often/always felt sad or down, 21% felt often/always worried or anxious, 12% often/always felt lonely with no-one to talk to, and 19% of people said they had a new or worsening health condition. Across all these indicators well-being had improved from previous interviews in winter 2020/21 and spring 2021. In the summer of 2021, 50% of adults with intellectual disabilities interviewed felt at least a little worried to leave the house – this was at a similar level to the winter of 2020/21, reversing an improvement in spring 2021.

The same project included surveys with approximately 300 family carers and support workers of adults with intellectual disabilities who could not take part in an interview. In the summer of 2021, family carers and support workers reported that 14% of people were often/always angry or frustrated in the four weeks before the survey, 12% of people were often/always sad or down, 25% of people were often/always worried or anxious, and 28% were reported to have had a new or worsening health condition in the four weeks before the survey.

A study of changes in prescription in two specialist psychiatric services for people with intellectual disabilities in London (urban setting) and Cornwall (rural setting) found that, in the urban setting, there had been an 11% increase in psychotropic prescribing during the lockdown, compared the pre-lockdown period. The authors consider whether the rural setting and fewer restrictions in Cornwall may be mitigated some of the stress linked to lockdown. Another possible explanation for the difference between settings may be the composition of clinical support (psychiatrist in London compared to a multidisciplinary team in Cornwall) (Naqvi et al, 2021).

Impact on people living with dementia

During the early part of the pandemic it was reported that there was evidence of substantial increases in the prescription of anti-psychotics to people with dementia (Howard, 2020). Some of this may have been due to increased need linked to delirium management or palliative care, but it is also likely to be attributable to worsened agitation and distress linked to COVID-19 restrictions (such as people in care homes being confined to their bedrooms, or not being able to receive family visits).

A qualitative study involving people living with dementia, their carers and therapists were interviewed at two time points around May 2020 and July 2020, generating evidence on the causes and effects of deconditioning. The study observed a set-reinforcing vicious cycle among participants: lockdown made the person apathetic, demotivate, socially disengaged, frailer and less confident, which reduced their activity levels, which in turn reinforced the effects of deconditioning. External supporters had an important role in motivating people to keep active and, with appropriate support and infrastructure, some participants could use tele-rehabilitation (Di Lorito, 2021).

References:

Comas-Herrera A, Salcher-Konrad M, Baumbusch J, Farina N, Goodman C, Lorenz-Dant K, Low L-F (2020) Rapid review of the evidence on impacts of visiting policies in care homes during the COVID-19 pandemic. LTCcovid.org, International Long-Term Care Policy Network, CPEC-LSE.

Di Lorito, C., Masud, T., Gladman, J. et al. Deconditioning in people living with dementia during the COVID-19 pandemic: qualitative study from the Promoting Activity, Independence and Stability in Early Dementia (PrAISED) process evaluation. BMC Geriatr21, 529 (2021). https://doi.org/10.1186/s12877-021-02451-z

Giebel, C., Cannon, J., Hanna, K., Butchard, S., Eley, R., Gaughan, A., Komuravelli, A., Shenton, J., Callaghan, S., Tetlow, H., Limbert, S., Whittington, R., Rogers, C., Rajagopal, M., Ward, K., Shaw, L., Corcoran, R., Bennett, K., & Gabbay, M. (2020). Impact of COVID-19 related social support service closures on people with dementia and unpaid carers: a qualitative study, 25(7), 1281–1288. DOI:https://doi.org/10.1080/13607863.2020.1822292

Giebel, C., Lord, K., Cooper, C., Shenton, J., Cannon, J., Pulford, D., Shaw, L., Gaughan, A., Tetlow, H., Butchard, S., Limbert, S., Callaghan, S., Whittington, R., Rogers, C., Komuravelli, A., Rajagopal, M., Eley, R., Watkins, C., Downs, M., … Gabbay, M. (2021). A UK survey of COVID-19 related social support closures and their effects on older people, people with dementia, and carers. International Journal of Geriatric Psychiatry, 36(3), 393–402. DOI:https://doi.org/10.1002/GPS.5434

Howard, R., Burns, A., & Schneider, L. (2020). Antipsychotic prescribing to people with dementia during COVID-19. The Lancet Neurology, 19(11), 892. DOI:https://doi.org/10.1016/S1474-4422(20)30370-7

Naqvi D., Perera B., Mitchell S., Sheehan R. and Shankar R. (2021). COVID-19 pandemic impact on psychotropic prescribing for adults with intellectual disability: an observational study in English specialist community services. BJPsych Open. 8. 10.1192/bjo.2021.1064.

Rajan, S., Comas-Herrera, A. and Mckee, M., 2020. Did the UK Government Really Throw a Protective Ring Around Care Homes in the COVID-19 Pandemic?. Journal of Long-Term Care, (2020), pp.185–195. DOI: http://doi.org/10.31389/jltc.53

Rand S.E., Silarova B, Towers A.-M. and Jones K. (2021) Social care-related quality of life of people with dementia and their carers in England. Health and Social Care in the Community. https://doi.org/10.1111/hsc.13681

Willner, P., Rose, J., Stenfert Kroese, B., Murphy, G. H., Langdon, P. E., Clifford, C., Hutchings, H., Watkins, A., Hiles, S., & Cooper, V. (2020). Effect of the COVID-19 pandemic on the mental health of carers of people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 33(6), 1523–1533. DOI:https://doi.org/10.1111/JAR.12811

Update for: England (UK)   Last updated: March 8th, 2022   Contributors: William Byrd  |  Chris Hatton  |  Stacey Rand  |  

2.05. Impacts of the pandemic on the health and wellbeing of people who use Long-Term Care

Impact on adults with intellectual disabilities

UK-wide interviews with approximately 500 adults with intellectual disabilities across the UK reported that in the four weeks before being interviewed in the summer of 2021: 13% of people said they often/always felt angry or frustrated, 15% often/always felt sad or down, 21% felt often/always worried or anxious, 12% often/always felt lonely with no-one to talk to, and 19% of people said they had a new or worsening health condition. Across all these indicators well-being had improved from previous interviews in winter 2020/21 and spring 2021. In the summer of 2021, 50% of adults with intellectual disabilities interviewed felt at least a little worried to leave the house – this was at a similar level to the winter of 2020/21, reversing an improvement in spring 2021.

The same project included surveys with approximately 300 family carers and support workers of adults with intellectual disabilities who could not take part in an interview. In the summer of 2021, family carers and support workers reported that 14% of people were often/always angry or frustrated in the four weeks before the survey, 12% of people were often/always sad or down, 25% of people were often/always worried or anxious, and 28% were reported to have had a new or worsening health condition in the four weeks before the survey.

Informal carers

In a survey of approximately 300 largely family carers of adults with intellectual disabilities across the UK in July/ August 2021, carers most commonly reported their caring role had affected them in terms of feeling tired (66%), a general feeling of stress (60%), or disturbed sleep (53%), with little change compared to previous surveys in December 2020 – February 2021 and April – May 2021.

Update for: Northern Ireland (UK)   Last updated: March 8th, 2022   Contributors: Chris Hatton  |  

2.05. Impacts of the pandemic on the health and wellbeing of people who use Long-Term Care

Responses to the Health and Sport Committee survey suggested that recipients of care felt an increased sense of loneliness and isolation. Unpaid carers also reported increased feelings of anxiety, depression and mental exhaustion (The Scottish Parliament, 2020).

Impacts on adults with intellectual disabilities

UK-wide interviews with approximately 500 adults with intellectual disabilities across the UK reported that in the four weeks before being interviewed in the summer of 2021: 13% of people said they often/always felt angry or frustrated, 15% often/always felt sad or down, 21% felt often/always worried or anxious, 12% often/always felt lonely with no-one to talk to, and 19% of people said they had a new or worsening health condition. Across all these indicators well-being had improved from previous interviews in winter 2020/21 and spring 2021. In the summer of 2021, 50% of adults with intellectual disabilities interviewed felt at least a little worried to leave the house – this was at a similar level to the winter of 2020/21, reversing an improvement in spring 2021.

The same project included surveys with approximately 300 family carers and support workers of adults with intellectual disabilities who could not take part in an interview. In the summer of 2021, family carers and support workers reported that 14% of people were often/always angry or frustrated in the four weeks before the survey, 12% of people were often/always sad or down, 25% of people were often/always worried or anxious, and 28% were reported to have had a new or worsening health condition in the four weeks before the survey.

Unpaid carers

In a survey of approximately 300 largely family carers of adults with intellectual disabilities across the UK in July/ August 2021, carers most commonly reported their caring role had affected them in terms of feeling tired (66%), a general feeling of stress (60%), or disturbed sleep (53%), with little change compared to previous surveys in December 2020 – February 2021 and April – May 2021.

References:

The Scottish Parliament, (2020). How has Covid-19 impacted on care and support at home in Scotland?

Update for: Scotland (UK)   Last updated: March 8th, 2022   Contributors: Chris Hatton  |  Jenni Burton  |  David Henderson  |  David Bell  |  Elizabeth Lemmon  |  

2.05. Impacts of the pandemic on the health and wellbeing of people who use Long-Term Care

A published paper explores the significant and high death toll of COVID-19 on care home residents and social care staff in England and Wales. These mortality figures, alongside differential treatment of residents and staff during the pandemic, are conceptualized as a form of structural abuse. Arguments are made for the inclusion of structural abuse as a separate category of elder abuse. The lack of appropriate personal protective equipment, paucity of guidance, and high mortality rate among care home staff and residents during the pandemic is indicative of social discourses that, when underpinned by ageism, reflect structural elder abuse. If structural elder abuse was to be included in classifications, it would demand a rethink of social and health-care services and the policies and practices associated with them and would reinforce the government message that safeguarding is everyone’s business (Parker, 2021).

Impact on adults with intellectual disabilities

UK-wide interviews with approximately 500 adults with intellectual disabilities across the UK reported that in the four weeks before being interviewed in the summer of 2021: 13% of people said they often/always felt angry or frustrated, 15% often/always felt sad or down, 21% felt often/always worried or anxious, 12% often/always felt lonely with no-one to talk to, and 19% of people said they had a new or worsening health condition. Across all these indicators well-being had improved from previous interviews in winter 2020/21 and spring 2021. In the summer of 2021, 50% of adults with intellectual disabilities interviewed felt at least a little worried to leave the house – this was at a similar level to the winter of 2020/21, reversing an improvement in spring 2021.

The same project included surveys with approximately 300 family carers and support workers of adults with intellectual disabilities who could not take part in an interview. In the summer of 2021, family carers and support workers reported that 14% of people were often/always angry or frustrated in the four weeks before the survey, 12% of people were often/always sad or down, 25% of people were often/always worried or anxious, and 28% were reported to have had a new or worsening health condition in the four weeks before the survey.

Unpaid or informal carers

In a survey of approximately 300 largely family carers of adults with intellectual disabilities across the UK in July/ August 2021, carers most commonly reported their caring role had affected them in terms of feeling tired (66%), a general feeling of stress (60%), or disturbed sleep (53%), with little change compared to previous surveys in December 2020 – February 2021 and April – May 2021.

References: 

Parker, J.(2021), “Structural discrimination and abuse: COVID-19 and people in care homes in England and Wales”, The Journal of Adult Protection, Vol. 23 No. 3, pp. 169-180. https://doi.org/10.1108/JAP-12-2020-0050

Update for: Wales (UK)   Last updated: March 8th, 2022   Contributors: William Byrd  |  Chris Hatton  |  

2.06. Other impacts of the pandemic on people who use Long-Term Care

People with intellectual disabilities and autistic people

Apart from impacts of the COVID-19 pandemic on access to health and social care services and the health and wellbeing of people with intellectual disabilities, UK-wide interviews with approximately 500 adults with intellectual disabilities and surveys with approximately 300 family carers and support workers have reported a range of other impacts on people’s lives. In July-August 2021, largely after COVID-19 restrictions were lifted in England, 19% of people with intellectual disabilities with greater support needs across the UK (including people with profound and multiple intellectual disabilities) were reported to be still shielding. Over a quarter of adults with intellectual disabilities reported that someone they knew well had died (of any cause) during the COVID-19 pandemic. In terms of paid employment, most but not all people with intellectual disabilities in paid employment before the pandemic were in paid employment in the July/August 2021, often via furlough or people’s jobs being held open (Flynn et al., 2021).

No systematic information is available concerning the impact of the COVID-19 pandemic on autistic people without intellectual disabilities in England.

People with impaired mental capacity living in care homes and human rights

There have been concerns about the impact of the pandemic on the human rights of people with impaired mental capacity living in care homes, with research showing that the key legal mechanisms to protect the human rights of care home residents did not operate well, with confusion among professionals as to whether the public health and infection control guidance should supersede, or not, the legal framework that protects the rights of exceptionally vulnerable residents (Kuylen et al. 2022).

References:

Flynn, S., Hayden, N., Clarke, L., Caton, S., Hatton, C., Hastings, R. P., Abbott, D., Beyer, S., Bradshaw, J., Gillooly, A., Gore, N., Heslop, P., Jahoda, A., Maguire, R., Marriott, A., Oloidi, E., Paris, A., Mulhall, P., Scior, K., Taggart, L., & Todd, S. (2021). Coronavirus and people with learning disabilities study Wave 3 Results: September 2021 (Full Report). Coventry, UK: University of Warwick. ISBN: 978-1-871501-37-7

Kuylen M., Wyliie A., Bhatt V., Fitton E., Michalowski S., Martin W. (2022) COVID-19 and the Mental Capacity Act in care homes: Perspectives from capacity professionals. Health and Social Care in the Community. https://doi.org/10.1111/hsc.13747

Update for: England (UK)   Last updated: March 7th, 2022   Contributors: Chris Hatton  |  Adelina Comas-Herrera  |  

2.06. Other impacts of the pandemic on people who use Long-Term Care

Adults with intellectual disabilities and autistic people

Apart from impacts of the COVID-19 pandemic on access to health and social care services and the health and wellbeing of people with intellectual disabilities, UK-wide interviews with approximately 500 adults with intellectual disabilities and surveys with approximately 300 family carers and support workers have reported a range of others impacts on people’s lives. In July – August 2021, largely after COVID-19 restrictions were lifted in England, 19% of people with intellectual disabilities with greater support needs across the UK (including people with profound and multiple intellectual disabilities) were reported to be still shielding. Over a quarter of adults with intellectual disabilities reported that someone they knew well had died (or any cause) during the COVID-19 pandemic. In terms of paid employment, most but not all people with intellectual disabilities in paid employment before the pandemic were in paid employment in July/ August 2021, often via furlough or people’s jobs being held open.

No systematic information is available concerning the impact of the COVID-19 pandemic on autistic people without intellectual disabilities in England.

Update for: Northern Ireland (UK)   Last updated: March 8th, 2022   Contributors: Chris Hatton  |  

2.06. Other impacts of the pandemic on people who use Long-Term Care

People with intellectual disabilities and autistic people

Apart from impacts of the COVID-19 pandemic on access to health and social care services and the health and wellbeing of people with intellectual disabilities, UK-wide interviews with approximately 500 adults with intellectual disabilities and surveys with approximately 300 family carers and support workers have reported a range of others impacts on people’s lives. In July – August 2021, largely after COVID-19 restrictions were lifted in England, 19% of people with intellectual disabilities with greater support needs across the UK (including people with profound and multiple intellectual disabilities) were reported to be still shielding. Over a quarter of adults with intellectual disabilities reported that someone they knew well had died (or any cause) during the COVID-19 pandemic. In terms of paid employment, most but not all people with intellectual disabilities in paid employment before the pandemic were in paid employment in July/ August 2021, often via furlough or people’s jobs being held open.

No systematic information is available concerning the impact of the COVID-19 pandemic on autistic people without intellectual disabilities in England.

Update for: Scotland (UK)   Last updated: March 8th, 2022   Contributors: Chris Hatton  |  

2.06. Other impacts of the pandemic on people who use Long-Term Care

People with intellectual disabilities and autistic people

Apart from impacts of the COVID-19 pandemic on access to health and social care services and the health and wellbeing of people with intellectual disabilities, UK-wide interviews with approximately 500 adults with intellectual disabilities and surveys with approximately 300 family carers and support workers have reported a range of others impacts on people’s lives. In July – August 2021, largely after COVID-19 restrictions were lifted in England, 19% of people with intellectual disabilities with greater support needs across the UK (including people with profound and multiple intellectual disabilities) were reported to be still shielding. Over a quarter of adults with intellectual disabilities reported that someone they knew well had died (or any cause) during the COVID-19 pandemic. In terms of paid employment, most but not all people with intellectual disabilities in paid employment before the pandemic were in paid employment in July/ August 2021, often via furlough or people’s jobs being held open.

No systematic information is available concerning the impact of the COVID-19 pandemic on autistic people without intellectual disabilities in England.

Update for: Wales (UK)   Last updated: March 8th, 2022   Contributors: Chris Hatton  |  

2.07. Impacts of the pandemic on unpaid carers

Impact on family carers of care home residents

A longitudinal qualitative study carried out in the UK in Autumn 2020 and March 2021 found that family carers of people living in care homes expressed increasing anger and distress about lack of safe visiting, which included negative emotions and some resentment toward care home staff, and lack of trust towards both care homes and the government. Carers also reported feelings of guilt for what their relatives were experiencing and some reported that this was exacerbated by visits with physical barriers such as windows and screens (Giebel et al., 2022).

References:

Giebel, C., Hanna, K., Marlow, P., Cannon, J., Tetlow, H., Shenton, J., Faulkner, T., Rajagopal, M., Mason, S. & Gabbay, M. (2022). Guilt, tears and burnout—Impact of UK care home restrictions on the mental well-being of staff, families and residents. Journal of Advanced Nursing, 00, 1– 12. https://doi.org/10.1111/jan.15181

Update for: United Kingdom   Last updated: March 11th, 2022

2.07. Impacts of the pandemic on unpaid carers

In a qualitative study based on co-resident family carers in Wales, interviewed carers stated the negative impact that staying at home (in response to government directives) during the lockdown had an overall negative impact on their subjective wellbeing, including increased depression and low mood. Social distancing measures were also said to strain personal relationships. Unpaid carers also experience lack of access to support services both for themselves and the person they cared for, which in turn  led to increased intensification of care responsibilities for co-resident carers (Cheshire-Allen, et al. 20022).

References: 

Cheshire-Allen, M. and Calder, G. (2022) ‘No one was clapping for us’: care, social justice and family carer wellbeing during the COVID-19 pandemic in
Wales, 6(1-2): 49–66, International Journal of Care and Caring, DOI: 10.1332/239788221X16316408646247

Update for: Wales (UK)   Last updated: March 4th, 2022

2.07. Impacts of the pandemic on unpaid carers

Impacts on health, wellbeing, and quality of life

Many carers have expressed the experience of stress and a negative impact on their physical and mental health. Carers UK (2020) reported that the negative impact on the mental health of carers was greater among carers experiencing financial difficulties. Research found that variations in hours of support were associated with higher levels of anxiety and lower levels of well-being (Giebel et al, 2021).

In a survey of approximately 300 largely family carers of adults with intellectual disabilities across the UK in July/August 2021, carers most commonly reported their caring role had affected them in terms of feeling tired (66%), a general feeling of stress (60%), or disturbed sleep (53%), with little change compared to previous surveys in December 2020-February 2021 and April-May 2021 (Willner et al., 2020).

In a study of community-dwelling adults with dementia and their carers (Rand et al, 2021), there was no significant association between the phases of the COVID-19 restrictions in England and carers’ care-related quality of life. Significant positive associations were found between care-related QoL and carer self-rated good health and satisfaction with social care support; negative associations were found with high-intensity caregiving (>50 hours per week), co-residence with the person with dementia, severe cognitive impairment and financial difficulties due to caring. The sample (n=313) reported high levels of unmet social care-related QoL need, with over 50% of the sample having unmet needs in five of the seven QoL domains (except self-care (32%) and personal safety (3%)).

Increase in numbers of people providing unpaid care

Evidence suggests that, since the beginning of the COVID-19 pandemic, a substantial number of people have taken on new care responsibilities. Several reports on unpaid carers have shown that there has been an increase in unpaid carers, many of those who have cared prior to the pandemic have increased their care commitment, largely due to reduced availability of services.

Carers Week and Office for National Statistics reports show that the number of people providing unpaid care has increased substantially since the COVID-19 related lockdown measures were put in place in March 2020. The Office for National Statistics report states that 48% of people in the UK cared for someone outside their own household in April 2020. The Carers Week report estimates that 4.5 million people in the UK have become unpaid carers during the COVID-19 outbreak in the UK. The reports show that people who have taken on new care responsibilities continue to be more likely to be female, although there was a high proportion of men taking on new care responsibilities. Carers who have taken on care responsibilities since the onset of the COVID-19 pandemic were slightly younger (45-54 years) compared to the groups that are usually more like to provide care (aged 55-64). The most frequently reported reasons for an increase in care responsibility were increased care needs and the reduction or suspension of local services. The Carers Week report found that new carers were more likely to be working and to have children (under 18 years).

Increase in care provided by family carers

Carers UK have reported that care responsibilities have increased for most carers, with the average time spent caring increasing by 10 hours to 65 hours of unpaid care per week. However, a small proportion of carers have provided less care. An increase in care responsibility and time spent caring was reported among most unpaid carers of people with dementia (73%). Many carers attributed the increase in time spent caring to the reduced availability of services. This proportion was particularly high among Black, Asian and Minority Ethnic (BAME) carers.

Concerns expressed by carers

A survey by Carers UK showed that a large proportion of unpaid carers are concerned about what would happen to the care recipient if the unpaid carer became unable to provide care (87%). A second concern expressed was the risk of infection due to domiciliary carers entering people’s homes. Carers of people with dementia also reported that people with dementia had difficulty following the distancing rules and understanding why their routines had been disrupted.

Impact on carers’ finances

Carer’s UK published evidence in April and October 2020 of a negative impact on carers finances, with some incurring increased costs (food, bills, equipment) and a reduced ability to work or loss of employment. While some carers highlighted that working remotely provided them with greater flexibility to manage care and work, others experienced greater challenges. Research by Bennett et al. (2020) on unpaid carers caring for someone outside their household found that carers with paid jobs worked fewer hours than other people in employment, and that female carers worked fewer hours than male carers. Financial pressure on carers was also illustrated through foodbank use, with 106,450 carers (1.76% of carers) reporting that their household had to rely on foodbanks in the past month. Foodbank use was higher among female and among young carers (aged 17-30). The research also showed that in the households of 228,625 unpaid carers, someone had gone hungry in the week prior to the survey. Again, this was higher among females and young carers (aged 17-30). (Bennett et al., 2020).

Impact on use of respite care for carers of individuals with dementia

The pandemic has heightened some of the demands of caring for people living with dementia as there have been fewer opportunities for social contact and breaks. A qualitative study conducted between March and December 2020 investigated the impact of COVID-19 on the views and expectations of 35 carers of people living with dementia about residential respite (i.e., staying in a care home for a short period of time).

Thematic analysis of interview data revealed that although residential respite is positive and provides some carers with an opportunity to take a break from caring (which is especially important during the pandemic as caregiver stressors may have been heightened), confidence in using respite was found to be compromised. This was for a variety of factors: firstly, carers described regularly negotiating the risks and stresses of the pandemic, weighing up changing family arrangements to facilitate caring and preventing infection. Secondly, the challenge of prioritising the needs of their relatives whilst bearing the impact of cumulative caregiving responsibilities was discussed. Participants in the study also revealed uncertainty about future residential respite due to anxieties around ongoing restrictions (such as quarantining before seeing visitors), availability (due to some care homes closing permanently during the pandemic), and disheartening sources of information about the pandemic (Samsi et al., 2022).

References:

Bennett, M., Zhang , Y., Yeandle, S. CARING and COVID-19 Hunger and mental wellbeing. University of Sheffield

Carers UK (2020). Caring behind closed doors: six months on. Retried from carersuk.org on 11/03/2022

Giebel, C., Lord, K., Cooper, C., Shenton, J., Cannon, J., Pulford, D., Shaw, L., Gaughan, A., Tetlow, H., Butchard, S., Limbert, S., Callaghan, S., Whittington, R., Rogers, C., Komuravelli, A., Rajagopal, M., Eley, R., Watkins, C., Downs, M., … Gabbay, M. (2021). A UK survey of COVID-19 related social support closures and their effects on older people, people with dementia, and carers. International Journal of Geriatric Psychiatry, 36(3), 393–402. DOI:https://doi.org/10.1002/GPS.5434

Samsi, K., Cole, L., Orellana, K., & Manthorpe, J. (2022). Is it worth it? Carers’ views and expectations of residential respite for people living with dementia during and beyond the COVID-19 pandemic. International Journal of Geriatric Psychiatry. https://doi.org/10.1002/GPS.5680

Rand S.E., Silarova B, Towers A.-M. and Jones K. (2021) Social care-related quality of life of people with dementia and their carers in England. Health and Social Care in the Community. https://doi.org/10.1111/hsc.13681

Willner, P., Rose, J., Stenfert Kroese, B., Murphy, G. H., Langdon, P. E., Clifford, C., Hutchings, H., Watkins, A., Hiles, S., & Cooper, V. (2020). Effect of the COVID-19 pandemic on the mental health of carers of people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 33(6), 1523–1533. DOI:https://doi.org/10.1111/JAR.12811

Update for: England (UK)   Last updated: March 11th, 2022   Contributors: Klara Lorenz-Dant  |  Stacey Rand  |  Chris Hatton  |  

2.08. Impacts of the pandemic on people working in the Long-Term Care sector

Impact on wellbeing and quality of life

Emerging evidence suggests that, since the pandemic began, health and care workers have been at high risk for significant psychological distress. Greene et al. (2020) surveyed a convenience sample (n = 1194) of health and social care workers from across the UK in the summer of 2020, to identify predictors of clinically significant distress (PTSD, anxiety, and depression) during the early phase of COVID-19.  The study found that clinically significant distress was common: just under 60% of participants met the threshold for PTSD, anxiety, or depression. This was less likely in participants with higher incomes. Predictors for a clinically significant mental disorder were concerns about passing COVID-19 onto others, being unable to discuss concerns with managers, being stigmatised, and not having reliable access to PPE.

Respondents to a survey (n = 163) conducted in early 2020 across the UK by The Queen’s Nursing Institute reported feeling worse (42%) or much worse (15%) in terms in terms of their mental and physical health as a result of working in conditions induced by the pandemic. Contributing factors to this included poor management, undervalued work (especially as compared to hospital staff), a lack of support from government, poor working conditions (including feeling inadequately protected by PPE), an increased workload, and concerns about the care workforce.

A recent study compared cross-sectional data from at three timepoints during the pandemic to examine how the workforce (health and social care) in the UK has been affected by the pressures of COVID-19, and how employers can help rebuild their services. Wellbeing and work-related quality of life was significantly compromised between May/July 2020 and May/July 2021, with respondents increasingly using negative avoidant coping strategies (such as substance abuse and self-blame) during this period. Between December 2020/November 2021 and May/July 2021, burnout was found to significantly increase. Consistent with other literature, the study that highlights that despite its resilience, much of the health and social care workforce has been overwhelmed by the COVID-19 pandemic (Gillen et al., 2022).

Impact on staff working in care homes

A longitudinal qualitative study found that staff were feeling overburdened and burned out, this was attributed to increased workloads, lack of support, and the emotional impacts of having to implement measures that were causing distress to residents and their family members (Giebel et al, 2022).

References:

Giebel, C., Hanna, K., Marlow, P., Cannon, J., Tetlow, H., Shenton, J., Faulkner, T., Rajagopal, M., Mason, S. & Gabbay, M. (2022). Guilt, tears and burnout—Impact of UK care home restrictions on the mental well-being of staff, families and residents. Journal of Advanced Nursing, 00, 1– 12. https://doi.org/10.1111/jan.15181

Gillen, P., Neill, R. D., Manthorpe, J., Mallett, J., Schroder, H., Nicholl, P., Currie, D., Moriarty, J., Ravalier, J., McGrory, S., & McFadden, P. (2022). Decreasing Wellbeing and Increasing Use of Negative Coping Strategies: The Effect of the COVID-19 Pandemic on the UK Health and Social Care Workforce. Epidemiologia 2022, Vol. 3, Pages 26-39, 3(1), 26–39. https://doi.org/10.3390/EPIDEMIOLOGIA3010003

Greene, T., Harju-Seppänen, J., Adeniji, M., Steel, C., Grey, N., Brewin, C. R., Bloomfield, M. A., & Billings, J. (2020). Predictors and rates of PTSD, depression and anxiety in UK frontline health and social care workers during COVID-19. MedRxiv, 2020.10.21.20216804. https://doi.org/10.1101/2020.10.21.20216804

Queen’s Nursing Institute. (2020). The Experience of Care Home Staff During Covid-19. A Survey Report by The QNI International Community Nursing Observatory. July. https://www.qni.org.uk/wp-content/uploads/2020/08/The-Experience-of-Care-Home-Staff-During-Covid-19-2.pdf [accessed 11/10/2020]

Update for: United Kingdom   Last updated: March 8th, 2022   Contributors: Daisy Pharoah  |  

2.08. Impacts of the pandemic on people working in the Long-Term Care sector

Sickness levels during the Omicron wave

A survey of members of the National Care Forum (the largest body representing not-for-profit care providers) released on the 13th January 2022 found that providers reported an 18% vacancy rate and 14% absences as a result of Omicron.

Impact in terms of COVID-related mortality

Data from the Office for National Statistics show that, between 9 March 2020 and 31 December 2021, there were 1,131 deaths of social care workers aged 20 to 64 attributed to COVID-19 in England. People working social care had higher rates of death involving COVID-19 compared to people of similar age and sex. For men working in social care, there were 203 deaths per 100,000 (compared to 77 for the general population and 78 for health care workers in the same age groups) and 93 deaths for 100,000 for females, compared to 43 for the general population and 36 for women working in healthcare.

Mental and physical health impacts

Emerging evidence suggests that, since the pandemic began, health and care workers have been at high risk for significant psychological distress (Greene et al., 2020). A study by Nyashanu et al. (2020) explored some of the triggers of mental health problems among healthcare workers during the first phase of the COVID-19 pandemic in early 2020. Semi-structured interviews with forty healthcare professionals from nursing homes and domiciliary care agencies in the English Midlands revealed various factors causing distress and anxiety. These included: a fear of infection and infecting others, lack of guidance from central government, death and loss of professionals and residents, unreliable testing and delayed or false results, staff shortages, and unsafe hospital discharges. Another important source of stress was the lack of recognition of care staff, which sat is stark contrast to the recognition showed to professionals in the NHS. Participants felt that they were not being adequately recognised as frontline healthcare workers, which negatively impacted their morale. This lack of recognition also caused delays in receiving PPE and testing; a further cause of stress.

Hussein (2020) reported findings from a survey of 296 frontline care workers that took place during July and August 2020. It found that nearly half of the respondents (47%) indicated that their general-health had worsened since the onset of COVID-19 and 60% indicated that the amount of time their jobs made them feel depressed, gloomy, or miserable had increased since the start of the pandemic. Additionally, 81% reported an increase in the amount of time that their jobs made them feel tense, uneasy, or worried. A significant minority of 23% indicated their job satisfaction had increased, whereas 42% said that they had become a little or a lot less satisfied with their job since COVID-19 (Hussein 2020). In another survey of 43 care home managers in England, 75% of managers reported that they were concerned for the morale, mental health, and wellbeing of their staff (Rajan et al, 2020). In addition, data reported by Skills for Care indicates that the percentage of days lost to staff sickness have increased by 180% (from 2.7% before the pandemic, to 7.5% between March and August 2020).

Impact on wellbeing and quality of life

A recent study compared cross-sectional data from at three timepoints during the pandemic to examine how the workforce (health and social care) has been affected by the pressures of COVID-19, and how employers can help rebuild their services. Wellbeing and work-related quality of life was significantly compromised between May/July 2020 and May/July 2021, with respondents increasingly using negative avoidant coping strategies (such as substance abuse and self-blame) during this period. Between December 2020/November 2021 and May/July 2021, burnout was found to significantly increase. Consistent with other literature, the study that highlights that despite its resilience, much of the health and social care workforce has been overwhelmed by the COVID-19 pandemic (Gillen et al., 2022).

References:

Greene, T., Harju-Seppänen, J., Adeniji, M., Steel, C., Grey, N., Brewin, C. R., Bloomfield, M. A., & Billings, J. (2020). Predictors and rates of PTSD, depression and anxiety in UK frontline health and social care workers during COVID-19. MedRxiv, 2020.10.21.20216804. https://doi.org/10.1101/2020.10.21.20216804

Gillen, P., Neill, R. D., Manthorpe, J., Mallett, J., Schroder, H., Nicholl, P., Currie, D., Moriarty, J., Ravalier, J., McGrory, S., & McFadden, P. (2022). Decreasing Wellbeing and Increasing Use of Negative Coping Strategies: The Effect of the COVID-19 Pandemic on the UK Health and Social Care Workforce. Epidemiologia 2022, Vol. 3, Pages 26-39, 3(1), 26–39. https://doi.org/10.3390/EPIDEMIOLOGIA3010003

Hussein, S. (2020). The Impact of COVID-19 on social care workers’ workload, wellbeing and ability to provide care safely: Findings from the UK. PSSRU blog

Nyashanu, M., Pfende, F., & Ekpenyong, M. S. (2020). Triggers of mental health problems among frontline healthcare workers during the COVID-19 pandemic in private care homes and domiciliary care agencies: Lived experiences of care workers in the Midlands region, UK. Health & Social Care in the Community. https://doi.org/10.1111/HSC.13204

Rajan, S., Comas-Herrera, A. and Mckee, M., 2020. Did the UK Government Really Throw a Protective Ring Around Care Homes in the COVID-19 Pandemic?. Journal of Long-Term Care, (2020), pp.185–195. DOI: http://doi.org/10.31389/jltc.53

Update for: England (UK)   Last updated: March 8th, 2022   Contributors: Daisy Pharoah  |  

2.08. Impacts of the pandemic on people working in the Long-Term Care sector

Mental Health Impacts

Emerging evidence suggests that, since the pandemic began, health and care workers have been at high risk for significant psychological distress. Greene et al. (2020) surveyed a convenience sample (n = 1194) of health and social care workers from across the UK in the summer of 2020, to identify predictors of clinically significant distress (PTSD, anxiety, and depression) during the early phase of COVID-19.  The study found that clinically significant distress was common: just under 60% of participants met the threshold for PTSD, anxiety, or depression. This was less likely in participants with higher incomes. Predictors for a clinically significant mental disorder were concerns about passing COVID-19 onto others, being unable to discuss concerns with managers, being stigmatised, and not having reliable access to PPE.

It is noted that the sample only included 14 participants from Northern Ireland, so it is possible that the results are not fully representative of the experience in this part of the UK.

References:

Greene, T., Harju-Seppänen, J., Adeniji, M., Steel, C., Grey, N., Brewin, C. R., Bloomfield, M. A., & Billings, J. (2020). Predictors and rates of PTSD, depression and anxiety in UK frontline health and social care workers during COVID-19. MedRxiv, 2020.10.21.20216804. https://doi.org/10.1101/2020.10.21.20216804

Update for: Northern Ireland (UK)   Last updated: March 8th, 2022   Contributors: Daisy Pharoah  |  

2.08. Impacts of the pandemic on people working in the Long-Term Care sector

Data from the Office for National Statistics show that, between 9 March 2020 and 31 December 2021, there were 56 deaths of social care workers aged 20 to 64 attributed to COVID-19 in Wales. People working social care had higher rates of death involving COVID-19 compared to people of similar age and sex. For women working in social care, there were 83 deaths per 100,000 (compared to 43 for the general population and 53 for health care workers in the same age groups), the rates for men cannot be compared meaningfully due very small numbers.

Update for: Wales (UK)   Last updated: February 3rd, 2022   Contributors: Adelina Comas-Herrera  |  

2.08.01. Impacts of the pandemic on migrant Long-Term Care workers

Visa Relaxation for Migrant Care Workers

In in December 2021 , addressing unprecedented challenges prompted by the pandemic, the government announced a temporary relaxation of immigration rules for overseas care workers in an attempt to recruit and retain care staff. Care assistants and home and social care workers are to be added to the Shortage Occupation List (SOL) in early 2022 and will be eligible for a 12-month health and care visa; allowing migrants to fill gaps in workforces. It is proposed that these measures will be in place for at least 12 months (DHSC, 2021; BBC News).

References:

DHSC, (2021). Biggest visa boost for social care as Health and Care Visa scheme expanded. DHSC Press Release, Retrieved from: www.gov.uk on 11/03/2022

Update for: England (UK)   Last updated: March 11th, 2022   Contributors: Daisy Pharoah  |  

2.09. Impact of the pandemic on workforce shortages in the Long-Term Care sector

One of the key messages from the recent State of Care report (by the CQC) is that although staffing pressures have been felt across both the health and care service delivery sectors, the impact of the pandemic has been seen most acutely in all areas of adult social care (including care home and home-care services).

The care workforce has been under increasing pressure due to people leaving the social care sector, which happened at a steadily increasing rate throughout 2021. Various factors explain the decline in care staff over this period, for example the appeal of more attractive salaries in the retail and hospitality industries, staff from adult social care (especially nurses) taking vacant posts in hospitals, and the requirement for all care home workers to be fully vaccinated against COVID-19 (as of 11 November 2021) (Source: CQC).

Workforce shortages: impact on mental health

Workforce shortages were reported as a key source of stress and anxiety in healthcare staff in a study by Nyashanu et al. (2020). Authors of this study collected data through interviews with forty healthcare workers from nursing homes (n = 20) and domiciliary care agencies (n = 20) in the English Midlands in the early phase of the pandemic (before May 2020) to explore triggers of mental health problems. Sickness rates increased and some had to use leave entitlements – this caused staff shortages and for the remaining staff to become increasingly mentally and physically drained. Participants reported feeling stressed and anxious in particular when shifts were being covered by agency staff who could have been exposed to the virus from working elsewhere.

Omicron wave

The rapid spread of the Omicron variant has had a drastic impact on the ability of social care providers to continue to offer services due to very high rates of staff sickness (ADASS).  In January 2022, more than 90 care operators declared a ‘red’  alert i.e. they don’t have the staff to meet demand (see section 2.04 of this report for more details on the impact on pandemic on access to care); these operators also reported an 18% vacancy rate and 14% absences as a result of Omicron, the vacancy rate was up from 9.4% in December 2021 (Skills for Care, 2021). Some providers reported having to close (some of their) care homes due to acute staff shortages, others report that care workers are under considerable pressures due to staff shortages  (see also section 3.06 of this report for more details on measures to ensure workforce availability).

References:

Nyashanu, M., Pfende, F., & Ekpenyong, M. S. (2020). Triggers of mental health problems among frontline healthcare workers during the COVID-19 pandemic in private care homes and domiciliary care agencies: Lived experiences of care workers in the Midlands region, UK. Health & Social Care in the Community. https://doi.org/10.1111/HSC.13204

Update for: England (UK)   Last updated: March 8th, 2022

2.10. Financial and other impacts of the pandemic on Long-Term Care providers

Care home providers

There are concerns about the viability of some care home providers, due to lower occupancy rates (as a result of a high number of deaths and people putting off entering care homes), and higher costs linked to additional staffing and PPE expenditure. Analysis by the Care Quality Commission (CQC) published in July 2020 shows that there has been a substantial reduction in admissions to care homes during the pandemic, although the rates vary significantly. Admissions funded by local authorities for the week ending June 7, 2020, were on average of 72% (range 43 to 113%) of the number received in the same period in 2019. In contrast, self-funded admissions, were on average at 35% of the 2019 levels (25% to 51%). One source reported that the occupancy of care home beds dropped approximately 13% over the course of the pandemic.

Community-based care providers

Data from a survey by the CQC showed that, as of May 2 to 8, 2020, around a fifth of agencies were caring for at least one person with suspected or confirmed COVID-19. Providers also reported that access to PPE was a big concern, with many instances of wrong or poor quality items being delivered. While homecare services were experiencing lower levels of activity (homecare hours were at 94% of pre-pandemic levels), local authorities continued to pay for planned hours, which helped to protect the providers they commission from, from the decrease in activity.

Update for: England (UK)   Last updated: March 11th, 2022   Contributors: William Byrd  |  

2.09. Impact of the pandemic on workforce shortages in the Long-Term Care sector

According to a recent report by The Federation of European Social Employers, The United Kingdom has experienced a strong increase of over 10% in staff shortages since 2021. The sub-sector most critically affected by staff shortages across the countries surveyed for this report were services for older persons. The job position most affected was nursing, but care assistants and homecare / social care workers also face real shortages. The most common reasons given for staff leaving the social care sector for another include low wages, and mental and physical exhaustion relating to the pandemic.

Update for: United Kingdom   Last updated: March 8th, 2022   Contributors: Daisy Pharoah  |  

3.01. Brief summary of the overall pandemic response (not specific to Long-Term Care)

In response to the COVID-19, the Government have introduced various public health and economic measures in England to mitigate the impact of the pandemic.

The first wave and first lockdown (January -September 2020)

The first cases of COVID-19 were discovered in January 2020, as a result, in late January and February, the government issued advice for travellers coming from affected countries and contact tracing was introduced. As the COVID-19 spread across England, the government introduced further public restrictions, but it was not until 23rd of March 2020 when the first lockdown was announced, which lasted between March and April 2020. The Coronavirus Act 2020, came into force on the 25th of March 2020 and it granted the devolved governments (England, Wales, Scotland and Northern Ireland) emergency powers (e.g. to suspend public gatherings, order businesses to close, mandate social distancing, close educational institutions etc) and it gave powers to the police to enforce these measures.  Simultaneously, it was announced that economic support has been provided to businesses which suffered due to restrictions and to furlough employees to mitigate the economic impact of the lockdown. The national restrictions introduced during first lockdown were gradually lifted between April  and September 2020, and people were urged to go back to work in offices and restaurants; however regional measures (lockdowns) were introduced due to rises in Covid cases in specific regions (Source: Coronavirus (COVID-19): guidance and support – GOV.UK).

Further waves and lockdowns (October- January 2020)

By the end of September 2020 cases were drastically increasing and on 14 October 2020, the government introduced a three-tier approach to containing the virus across England. In the new approach, restrictions varied locally according to defined tiers (tier 1 restrictions were referred to as ‘Local COVID Alert Level Medium’,  tier 2 as ‘Local COVID Alert Level High’ and tier 3 ‘Local COVID Alert Level Very High’) (Source: Coronavirus, Local COVID-19 Alert Level). As cases continued to rise, a 4-week national lockdown was announced commencing on Nov 5, 2020 (Source: The UK needs a sustainable strategy for COVID-19). A new enhanced tier system was announced in November, which was to be applied following the end of the second lockdown on 2 December.  Following a discovery of a new COVID strain, England entered another national lockdown on the 5th of January 2021.

Vaccination and lifting of national lockdowns

The vaccination programme started in December 2020 and as it expanded, most restrictions were lifted in England on 19 July 2021. Following the discovery and spread of the Omicron variant, in December 2021, government advised people to work from home advice and mandatory face masks in certain settings were introduced.

Living with COVID- 19 (February 2022)

On the 21st February 2022 the government announced that all COVID regulations, including those that mandate lockdown and require people to self-isolate if they test positive, will be removed from the 24th of February, 2022. The plan is outlined in the “Living with Covid 19” report.  Although those who test positive and their close contacts (including those who are unvaccinated) will no longer be required by law to self-isolate, the advise still is to isolate for five days and avoid contact with vulnerable people. Financial support for people who are self-isolating will also come to an end, although statutory support due to illness will be available. From April 1, when the general public will no longer be able to access free COVID-19 tests (Source: Living with Covid 19).

Update for: England (UK)   Last updated: March 24th, 2022   Contributors: Joanna Marczak  |  

3.01. Brief summary of the overall pandemic response (not specific to Long-Term Care)

First wave and lockdown

On the 1^st March 2020, the first positive case of COVID-19 was confirmed in Scotland. Two days later, the UK Government announced its Coronavirus Action Plan; a four staged collective approach for the UK to contain and respond to the spread of the virus. The main advice given to the public at this stage was to wash their hands regularly with soap and water, for at least 20 seconds.

In the following months, a series of recommendations and guidance on isolating, social distancing and event closures were followed by the formal placement of the NHS on an emergency footing and eventually orders were enacted to ask all Scots to stay at home, as the UK entered lockdown on the 24^th March 2020. School closures followed. Towards the end of May, the Scottish Government published its Routemap through the pandemic, outlining a five-phased approach to varying

Between May and July Scotland moved through Phases 1 to 3 of the Routemap. The test and protect scheme was rolled out from 28^th May and the new contact tracing app was developed. By August, COVID-19 cases were increasing in certain parts of Scotland and localised restrictions were brought into place. On the 20^th August 2020, the Scottish Government announced that Scotland would remain in Phase 3 and they set out updated dates for further changes.

Throughout September more localised restrictions were implemented as cases continued to spread and by November 2^nd the new five-level strategic framework indicating varying levels of restrictions that would be required depending on the level of transmission of the virus came into effect.

Vaccination

The roll-out of the vaccination programme was announced in December with care home residents, their carers and frontline health care workers being vaccinated first. The over 80s would follow, along with other groups identified as being at risk of serious harm and death from the virus. By the 15^th May, 66.6% of eligible Scots had received their first dose of the COVID-19 vaccination.

Second lockdown

Further restrictions were introduced over the festive period and on 5^th January mainland Scotland entered its second lockdown. All travel corridors were suspended from 18^th January. At this point, the roll out of the vaccination programme was well under way and by 17^th March, 44% of the adult population had received their first dose of the vaccine.

The second national lockdown would remain until restrictions began to be eased from 2^nd April. From the 26^th April, free lateral flow test kits were to be made available to anyone in Scotland without symptoms and Scots were encouraged to test themselves twice weekly.

Level 0 and booster vaccinations

Due to the success of the vaccination roll out, on the 19^th July 2021, the whole of Scotland entered level 0. Up until November 2021, the focus of the Scottish Government has been continuing to administer vaccines, including the roll out of booster vaccinations (Source: https://spice-spotlight.scot/2021/11/26/timeline-of-coronavirus-covid-19-in-scotland/).

Update for: Scotland (UK)   Last updated: March 24th, 2022   Contributors: Jenni Burton  |  David Henderson  |  David Bell  |  Elizabeth Lemmon  |  

3.02. Governance of the Long-Term Care sector's pandemic response

Guidance on infection prevention and control for care homes was updated numerous times during the pandemic. Some of the relevant guidance was issued in policy documents from the Department of Health and Social Care, and some from Public Health England. Initial guidance on February 25, 2020, advised that it was unlikely that people receiving care would be infected (at the time there had been no known transmission within the UK). It was not until April that the guidance documents in England took into account the possibility of pre-symptomatic or asymptomatic transmission both with regards to testing and isolation policies.

Pandemic Governance: Perceptions of Care Home Managers

Authors of a study published in February 2021 interviewed 10 managers of care homes in the East Midlands of England, asking them about their experiences of the pandemic from a structured organisational perspective. Results highlighted that the care sector was placed in considerable jeopardy by the organised responses to the pandemic, in part because those responsible for pandemic response were insufficiently expert in the way that care is delivered in care homes. For example, when central and local government increased the formal reporting requirements placed on care homes (albeit to better understand their needs), efforts were duplicated for staff who were already overstretched – which risked compromised care for residents. Control over pandemic response was also taken away from care home managers – who were normally quite competent at managing the supply chain – when PPE supplies were centralised. Overall, participants in the study felt that care homes were not adequately considered by those making and delivering policy (Marshall et al., 2021).

Pandemic Governance: Experiences of Care Home Staff

Care home-specific guidance was scant during the early stages of the pandemic. This was highlighted in a study by Spilsbury et al. (2021), who analysed the contents of a WhatsApp group to capture the nature of uncertainties and organisational questions expressed by members. The self-formed WhatsApp group was comprised of 250 care home staff in the early stages of the pandemic to facilitate peer-support and information-sharing. Results of the study reveal that staff faced a range of uncertainties; in particular, uncertainties around symptoms and treatment, prevention and control, maintaining an effective workforce, and maintaining effective care. Importantly, just under a third of these (28%) were fact-based and could have been easily resolved through unambiguous and efficient signposting to guidance. The study illustrates that the basic information needs of care home staff were not satisfied in the early stages of the pandemic . This sits in contrast to the proliferation of – sometimes conflicting – guidance during the later stages of the pandemic (Hinsliff-Smith et al., 2020).

Pandemic Governance: Impact on Mental Health

Nyashanu et al. (2020) collected data through interviews with forty frontline healthcare workers from nursing homes (n = 20) and domiciliary care agencies (n = 20) in the English Midlands in the early phase of the pandemic to explore triggers of mental health problems. One of the key anxiety-inducing triggers that they found was a lack of guidance from central government. Participants felt that improved guidance was crucial, especially given the ever-changing information that was coming out about the virus.

References:

Hinsliff-Smith, K., Gordon, A., Devi, R., & Goodman, C. (2020). The COVID-19 Pandemic in UK Care Homes – Revealing the Cracks in the System. The Journal of Nursing Home Research, 6, 58–60. https://doi.org/10.14283/JNHRS.2020.17

Marshall, F., Gordon, A., Gladman, J. R. F., & Bishop, S. (2021). Care homes, their communities, and resilience in the face of the COVID-19 pandemic: interim findings from a qualitative study. BMC Geriatrics, 21(1). https://doi.org/10.1186/S12877-021-02053-9

Nyashanu, M., Pfende, F., & Ekpenyong, M. S. (2020). Triggers of mental health problems among frontline healthcare workers during the COVID-19 pandemic in private care homes and domiciliary care agencies: Lived experiences of care workers in the Midlands region, UK. Health & Social Care in the Community. https://doi.org/10.1111/HSC.13204

Spilsbury, K., Devi, R., Griffiths, A., Akrill, C., Astle, A., Goodman, C., Gordon, A., Hanratty, B., Hodkinson, P., Marshall, F., Meyer, J., & Thompson, C. (2021). SEeking AnsweRs for Care Homes during the COVID-19 pandemic (COVID SEARCH). Age and Ageing, 50(2), 335–340. https://doi.org/10.1093/AGEING/AFAA201

Update for: England (UK)   Last updated: March 24th, 2022   Contributors: Daisy Pharoah  |  

3.02. Governance of the Long-Term Care sector's pandemic response

Health Protection Scotland (HPS) has published specific guidance for infection prevention and control in social or community care and residential settings for frail people and those with complex needs. In addition the Chief Medical Officer has published specific advice about visitors and admissions to care homes (Sources: GOV.SCOT; gov.scot.1; gov.scot.2; gov.scot.3).

Update for: Scotland (UK)   Last updated: March 29th, 2022   Contributors: Jenni Burton  |  Elizabeth Lemmon  |  David Henderson  |  David Bell  |  

3.02. Governance of the Long-Term Care sector's pandemic response

Governance: impact on mental health

Respondents across the UK of a survey in early 2020 by The Queen’s Nursing Institute (2020) reported feeling worse (42%) or much worse (15%) in terms in terms of their mental and physical health as a result of working in conditions instigated by the pandemic. A key contributing factor to this was a lack of government support or guidance.

References:

Queen’s Nursing Institute. (2020). The Experience of Care Home Staff During Covid-19. A Survey Report by The QNI International Community Nursing Observatory. July. https://www.qni.org.uk/wp-content/uploads/2020/08/The-Experience-of-Care-Home-Staff-During-Covid-19-2.pdf [accessed 11/10/2020]

Update for: United Kingdom   Last updated: March 24th, 2022   Contributors: Daisy Pharoah  |  

3.02.01. National or equivalent Covid-19 Long-Term Care taskforce 

On June 8, 2020, the Government announced the creation of a social care sector COVID-19 taskforce in order to ensure concerted action to implement key measures taken to date. In particular, the taskforce was intended to support the delivery of the government’s social care action plan, published on April 15, 2020, and its home care support package. The taskforce, which included representatives from across government and the care sector, was intended to “support the national campaign to end transmission in the community, and will also consider the impact of COVID-19 on the sector over the next year and advise on a plan to support it through this period”. The Taskforce published its report in late September 2020, identifying a total of 52 recommendations across a range of domains including PPE, testing, workforce, and controlling infection in different settings (DHSC, 2020). The learning disabilities and autistic people advisory group to this taskforce published 5 key recommendations, which the co-chairs of the advisory group have stated were not reflected in the taskforce report as a whole. These were accessible guidance and communications, restoring and maintaining vital support services, expanding PPE and testing, tackling isolation and loneliness, and seeking and supporting people who may be in crisis.

References:

DHSC (2020). Social Care Sector COVID-19 Support Taskforce: final report, advice and recommendations. Report, Retrieved from Social Care Sector COVID-19 Support Taskforce. Accessed on 15/03/2022

DHSC (2020). National action plan to further support adult social care sector. Press Release. Retrieved from https://www.gov.uk/government/news/national-action-plan-to-further-support-adult-social-care-sector. Accessed on 15/03/2022

DHSC (2021). Coronavirus (COVID-19): care home support package.  DHSC Guidance. Retrieved from https://www.gov.uk/government/publications/coronavirus-covid-19-support-for-care-homes/coronavirus-covid-19-care-home-support-package

Update for: England (UK)   Last updated: March 15th, 2022   Contributors: William Byrd  |  

3.02.03. Measures to support, facilitate and compensate for disruptions to access to care

During March and April 2020, there was a substantial reduction in hospital admissions among care home residents. Elective admissions reduced to 58% of the 5-year historical average and emergency admissions to 85% of the 5-year historical average. By reducing admissions, care home and NHS teams may have reduced the risk of transmission, but there may have also been an increase in unmet health needs.

To facilitate access to crucial medicines, on April 23, 2020, the Department of Health and Social Care (DHSC) (2020) published new standard operating procedures for the use of medicine in care homes and hospice settings in England. The scheme allowed care homes and hospices to re-use medicine that was issued for one resident for another under specific circumstances and only in crisis situations. The guidance document contains information on the specific circumstances in which medicines labelled for one person (who no longer needs them) can be used for another person. The usually strict regulations around re-using or recycling medication were relaxed as there were ‘increasing concerns about the pressure that could be placed on the medicines supply chain during the peak of the COVID-19 pandemic’.

From May 15, 2020, the NHS was expected to ensure that care homes were able to receive clinical support from primary care and community health services.

References:

DHSC (2020). Novel coronavirus (COVID-19) standard operating procedure: running a medicines re-use scheme in a care home or hospice setting. Accessed on 15/03/2022

Hodgson, H. et al. (2020). Adult social care and COVID-19: Assessing the impact on social care users and staff in England so far. The Health Foundation briefing. Accessed on 15/03/2022

Update for: England (UK)   Last updated: March 15th, 2022   Contributors: William Byrd  |  

3.02.03. Measures to support, facilitate and compensate for disruptions to access to care

The Adult social care – winter preparedness plan: 2021-22 sets out the measures that will be applied across the adult social care sector to meet the challenges over the winter 2021 – 2022. This includes provisions to maintain high quality integrated health and social care services across cares settings. There has been £62 million allocated for 2021/22 to help with building capacity in care at home community-based services. This funding is for:

1. Expanding existing services, by recruiting internal staff; providing long-term security to existing staff; enabling additional resources for social work to support complex assessments, reviews and rehabilitation; commissioning additional hours of care; commissioning other necessary supports depending on assessed need; enabling unpaid carers to have breaks.
2. Funding a range of approaches to preventing care needs from escalating, such as intermediate care, rehabilitation or re-enablement and enhanced MDT support to people who have both health and social care needs living in their own homes or in a care home.
3. Technology-Enabled Care (TEC), equipment and adaptations, which can contribute significantly to the streamlining of service responses and pathways, and support wider agendas. (Source: https://www.gov.scot/publications).

Update for: Scotland (UK)   Last updated: March 24th, 2022   Contributors: Jenni Burton  |  David Henderson  |  David Bell  |  Elizabeth Lemmon  |  

3.03. Monitoring Covid-19 impacts in the Long-Term Care sector: data and information systems

A lack of linked datasets for care homes slowed down the pandemic response in care homes.  The number of different bodies that are collecting information, and the absence of standardisation and cross sector cooperation in how data are collated, shared, and used have prevented rapid and effective responses (Hanratty et al. 2020). 

References:

Hanratty B. et al. (2020) Covid-19 and lack of linked datasets for care homes. BMJ 2020; 369 doi: https://doi.org/10.1136/bmj.m2463

Update for: United Kingdom   Last updated: March 24th, 2022

3.03. Monitoring Covid-19 impacts in the Long-Term Care sector: data and information systems

In August 2020, the Scottish Government commissioned the use of a new web-based tool- The Turas Care Management Tool or Safety Huddle tool – to help monitor the risk of COVID-19 within Scotland’s care homes. The tool provides a central location for all Scottish care homes to record information on infection rates, demand on services and staff testing. The purpose of the tool was to provide early warning signs of emerging trends to allow homes to intervene early.

Update for: Scotland (UK)   Last updated: March 24th, 2022   Contributors: Jenni Burton  |  David Henderson  |  David Bell  |  Elizabeth Lemmon  |  

3.04. Financial measures to support users and providers of Long-Term Care

The Department of Health and Social Care (DHSC) (2020) published the action plan for social care, on April 15 2020, confirmed the announcement in March of £2.9 billion of funding ‘to strengthen care for the vulnerable’. Of the £2.9 billion, £1.3 billion was earmarked for collaborative efforts between the NHS and local authorities, particularly to fund additional support following hospital discharge, and £1.6 billion of the funding was allocated to support local government with the provision of services, including adult social care. The action plan outlines that local authorities are expected to use the additional funding to protect providers cash flow, monitor ongoing cost of care delivery, and adjust fees to meet new costs. It is anticipated that this funding covers the cost for additional personal protective equipment (PPE) required. The government suggests that the additional money provided could also be used for backfilling shifts as well as to maintain income for workers unable to work due to physical distancing measures as far as possible. This is intended to financially support workers who may have to stop working temporarily because they are unwell or self-isolating. Furthermore, the plan made a plea for donations to support social care workers who may experience financial difficulties, similar to the donations that NHS charities have received. A survey examining funding access found that only 30% of care home managers reported receiving a financial uplift at the time, with 73% stating that they needed more funding (Rajan et al. 2020).

On May 15, a £600 million Infection Control Fund was introduced as part of a wider package of support for care homes to help providers reduce the rate of transmission in and between care homes and support wider workforce resilience. The funding is being paid in 2 tranches. The first was paid to local authorities on May 22. The second tranche was paid in early July. This money has been allocated to local authorities and is in addition to the funding already provided to support the adult social care sector during the COVID-19 pandemic. Local authorities are expected to pass 75% of the initial funding directly to care homes in their area for use on infection control measures, including to care homes with whom the local authority does not have existing contracts. The second payment will be contingent on the first being used for infection control. The remaining 25% must also be used for infection control measures, but local authorities are able to allocate this based on need.

Local authority directors responsible for administering this new fund have expressed “deep concern” that it apparently cannot be used by homes to purchase PPE, requires detailed and prescriptive accounting and reporting, does not cover domiciliary care and supported living schemes, resulting in “a confused and overly bureaucratic system, which makes it difficult for providers to claim and impossible for local authorities to deliver within the required timescales”. An independent analysis commissioned by local authorities estimated that providers could face over £6 billion in additional costs during April to September 2020, because of higher staffing costs (mainly due to cover staff who are ill or self-isolating), PPE, and extra cleaning and overhead costs.

On October 1, DHSC announced a second round of funding worth £546 million for the Adult Social Care Infection Control Fund. This is to be extended until March 2021, following on from May 2020, when the fund was initially worth £600 million. The purpose of this fund is to support adult social care providers to reduce the rate of COVID-19 transmission within and between care settings, in particular by helping to reduce the need for staff movements between sites. Half will be paid on October 1, and the other in December. Local authorities should pass on 80% of this to care homes on a per bed basis and CQC-regulated community care providers on a per user basis, both of which must be within the local geographical area. The other 20% should be used to support care providers, allocated at the discretion of the local authority. This allocation cannot be used to pay for the cost of purchasing extra PPE.

As recently as November 3, 2020, 75 care organisations called on the government to align the Carers Allowance with Universal Credit, as it is currently in Scotland, to recognise the disproportionate impact of the pandemic on carers.

On December 23, DHSC announced £149 million to support the rollout of Lateral Flow Device (LFD) testing in care homes. This funding will be paid in January 2021. All funding must be used to support increased LFD testing in care settings. Local authorities should pass on 80% of this to care homes on a per bed basis, which must be within the local geographical area. The other 20% should be used to support care providers to implement increased LFD testing, allocated at the discretion of the local authority.

On January 13, 2021, NHS England (NHSE) announced that the amount that local vaccination services could claim for delivering COVID-19 vaccinations in care home settings was increasing from the original £12.58 Item of Service fee and an enhanced payment of £10. This has been increased so that first doses delivered in a care home setting from December 14, 2020, to close January 17, 2021, will carry an enhanced additional payment of £30, and doses delivered in the week beginning January 18 a payment of £20. The £10 will continue to apply for all COVID vaccinations in a care home setting between January 25 and 31, as well as for the second dose for all patients and staff who received their first dose on or before January 31. Primary Care Networks (PCNs) bringing in additional workforce between now and the end of January will be eligible to claim up to £950 per week (a maximum of £2500 per PCN grouping).

On January 17, 2021, DHSC announced the Workforce Capacity Fund, worth £120 million, which was to support local authorities in boosting staffing levels and deliver measures to supplement and strengthen adult social care staff capacity to ensure that safe and continuous care is achieved. This funding is available until March 31. The first £84 million (70%) will be paid in early February and the second £36 million (30%) will be paid in March.

On March 12, Nuffield Trust published a blog post explaining that there was no mention of social care in the budget announced by the Chancellor. Short-term emergency support (the Rapid Testing Fund, the Infection Control Fund, and the Workforce Capacity Fund) was crucial in enabling the social care sector to function throughout the pandemic, and is due to expire at the end of March.

On March 18, LaingBuisson reported that an extra £341 million was to be provided to support adult social care with the costs of infection prevention control and testing so that visits can be carried out safely. This commitment was for a three-month period. There was no mention of an extension to the Workforce Capacity Fund. On the same day, the National Care Forum’ press release reported that there were announcements around additional funding for hospital discharge.

Updated on October 1, the 2021 to 2022 Better Care Fund is one of the national vehicles for driving health and social care integration. It requires clinical commissioning groups (CCGs) and local government to agree a joint plan, owned by the Health and Wellbeing Board (HWB). This will total approximately £6.9 billion, with a minimum NHS (CCG) contribution of nearly £4.3 billion, an improved Better Care Fund (iBCF) of just over £2 billion, and a Disabled Facilities Grant (DFG) of just over £570 million.

References:

DHSC (2020). COVID-19: Our Action Plan for Adult Social Care. Retrieved from: publishing.service.gov.uk; Accessed on 15/03/2022

Rajan, S, et al.. (2020). Did the UK Government Really Throw a Protective Ring Around Care Homes in the COVID-19 Pandemic? Journal of Long-Term Care, pp. 185–195. DOI: https://doi.org/10.31389/jltc.53

Oung, C. at al. (2020). What are carers in each of the four UK countries entitled to? Nuffield Trust blog post. Retrieved from: The Nuffield Trust ; Accessed on 15/03/2022

Additional sources: 

About the Adult Social Care Infection Control Fund – GOV.UK (www.gov.uk)

Support for care homes: letter from the Minister of State for Care (publishing.service.gov.uk)

Workforce Capacity Fund for adult social care – GOV.UK (www.gov.uk)

Update for: England (UK)   Last updated: March 15th, 2022   Contributors: William Byrd  |  

3.05. Long-Term Care oversight and regulation functions during the pandemic

The Coronavirus Act (March 25 and renewed on September 30, 2020) included provision to relax the responsibilities of local authorities under the Care Act 2014 to streamline their services in case of workforce shortages or increased demand. The Act also enabled rapid discharge of patients from hospital by allowing assessments to be delayed. There was concern that the Care Act Easements included in the Coronavirus Act would be widely used to reduce care packages but only a small number of councils utilised them. As of November 2020, the Care Quality Commission (CQC) reported that no local authorities were currently using Care Act Easements.

The CQC interrupted routine inspections on March 16, 2020. In May 2020, the CQC began to implement an Emergency Support Framework setting out its approach to regulation during COVID-19. This involved suspending routine inspections of services and instead using and sharing information to target support where it’s needed and taking action to keep people safe and protect their human rights. The CQC are now starting to resume some inspections in 300 random homes in relation to management of the pandemic, examining four key areas; safe care and treatment; staffing arrangements; protection from abuse; assurance processes monitoring and risk management. Much will be conducted remotely and in person inspections will take place under exceptional circumstances only.

Published on November 3, 2021, the Adult social care: COVID-19 winter plan 2021 to 2022 sets out the key elements of national support available for the social care sector for winter 2021 to 2022. During this period, the CQC will continue to apply a risk-based approach to inspection, using information from a range of sources, including from people using services and their families, to shape their inspection activity. Additionally, they will ensure that all inspections of care providers consider how well services are managing infection prevention and control, taking swift regulatory action where provider-level performance requires rapid improvement. This will include monitoring compliance with vaccinations as a condition of deployment within its inspection activity.

Additional Sources:

Dunn, P. et al. (2020). Adult social care and COVID-19: Assessing the policy response in England so far. Health Foundation briefing

Eight councils have triggered Care Act duty moratorium in month since emergency law came into force – Community Care

Joint statement on our regulatory approach during the coronavirus pandemic | Care Quality Commission (cqc.org.uk)

Routine inspections suspended in response to coronavirus outbreak | Care Quality Commission (cqc.org.uk)

Update for: England (UK)   Last updated: March 15th, 2022   Contributors: William Byrd  |  

3.06. Support for care sector staff and measures to ensure workforce availability 

Overview: A Timeline

The social care action plan recognised the urgent need to increase the social care workforce during the pandemic “to cover for those who are not in work, and to relieve the pressure on those that are”. The action plan included an ‘ambition’ to attract 20,000 people into social care over 3 months.

On March 19, 2020, social care staff were designated as ‘key workers’ to enable them to continue to access childcare once schools were closed. On May 6, the government launched a dedicated CARE app to support the social care workforce during COVID-19, offering access to guidance, learning resources, discounts, and other support all in one place.

On May 11, the Department of Health and Social Care (DHSC) published guidance on maintaining the health and wellbeing of the adult social care workforce. This placed the responsibility on employers to check in on team members regularly, especially those who are working remotely. It stated that employers should encourage teams to create a wellness action plan so that employees can identify how to address what keeps individuals mentally well at work. This additionally suggested that employers should encourage those who are identified as being extremely clinically vulnerable to stay at home. Where this is not possible, they should be supported to work in roles or settings that have been assessed as lower risk.

On 15 May, the Government announced a new wellbeing package for social care staff delivered through the CARE app, including two new helplines, led by the Samaritans and Hospice UK. This is intended to help support care staff with their mental health and wellbeing, and support those who have experienced a traumatic death as part of their work.

On October 1, DHSC announced a second round of funding worth £546 million for the Adult Social Care Infection Control Fund. This is to be extended until March 2021, following on from May 2020, when the fund was initially worth £600 million. The purpose of this fund is to support adult social care providers to reduce the rate of COVID-19 transmission within and between care settings, in particular by helping to reduce the need for staff movements between sites. This includes ensuring that staff who are isolating in line with government guidance receive their normal wages, limiting all staff movement between settings unless necessary, limiting the number of different people from a home care agency visiting a particular individual, limiting or cohorting staff, supporting active recruitment of additional staff, and providing accommodation for staff who proactively choose to stay separate from their families.

On January 17, 2021, DHSC announced a £120 million Workforce Capacity Fund to help local authorities to boost staffing levels. The aim of this is to strengthen social care staff capacity so that safe and continuous care is achieved by all providers of adult social care. This additionally stated that providers should not be deploying people in care homes if these people are being deployed to provide care in other settings, unless in exceptional circumstances. This places the responsibility on local authorities for contacting private providers with excess capacity to redeploy these staff into other settings to best meet workforce demand. This fund can be used to pay overtime rates to encourage staff to work additional shifts, cover childcare costs to allow staff to take on hours they would usually be unable to work, and enable care providers to overstaff at pinch points to lessen the impact of any staff absences should they arise. Additionally, local authorities are responsible for considering whether there are trained individuals who have been made redundant from care providers which have exited the market and so would be able to transition quickly into a new care setting. There may be individuals without care experience who have recently been made redundant and may require support applying to the care sector and training.

On February 9, DHSC announced that the government was asking people to register their interest in taking up short-term paid work in the adult social care sector to meet urgent demand during winter.

On March 3, DHSC published guidance on restricting workforce movement between care settings. This stated that staffing requirements should be planned so that routine movement is not required to maintain safe staffing levels, with mitigations such as exclusivity contracts and block booking used to minimise staff movement where temporary staff are needed. Additionally, should a provider need to deploy an individual between two settings, they should ensure a 10-day interval between the individual attending the two settings. The individual must have a PCR negative test in the 7 days before starting the placement. Additionally, this states that providers should cohort staff to individual groups of residents and ensure staff movement is limited between these groups. Providers should take steps to limit the use of public transport by staff and discourage lift sharing arrangements.

In October 2021 the DHSC launched a national recruitment campaign highlighting the positive aspects of working in the social care sector. There are other measures in place to facilitate rapid recruitment to the sector, such as recruitment guidance and resources by Skill for Care (RecruitmentReady), and free rapid online induction and refresher training.

The Capacity Tracker, a web-based digital insight tool and the Adult Social Care Workforce Dataset are being used to monitor the situation. As of November 2021 the vacancy rate in social care was 9.2%

Published on November 3, the Adult social care: COVID-19 winter plan 2021 to 2022 sets out the key elements of national support available for the social care sector for winter 2021 to 2022. This will provide £162.5 million through the workforce recruitment and retention fund to support local authorities and providers to recruit and retain sufficient staff over winter, and support growth in workforce capacity of the existing workforce, until 31 March 2022.

The DHSC has made available guidance and resources to support the wellbeing of people working in health and social care, including a collaboration with charities that provide mental health support, and a risk reduction framework for providers to reduce the risk of infection for staff working in social care.

To release the recruitment pressures (old and new pressures stemming from the new wave of Omicron), in December 2021, the government  announced that care workers, care assistants and home care workers will be added to the Shortage Occupation List as part of the health and care visa to make it quicker, cheaper and easier for social care employers to recruit eligible workers to fill employment gaps. The changes are planned to come into effect early 2022, initially for a period of 12 months. The inclusion on the Shortage Occupation List will stipulate an annual salary minimum of £20,480 for carers to qualify for the Health and Care visa and it will allow applicants and their dependents to benefit from fast-track processing, dedicated resources in processing applications and reduced visa fees.

Update for: England (UK)   Last updated: March 8th, 2022   Contributors: William Byrd  |  Joanna Marczak  |  Daisy Pharoah  |  

3.06. Support for care sector staff and measures to ensure workforce availability 

The adult social care – winter preparedness plan: 2021-22 sets out the measures that will be applied across the adult social care sector to meet the challenges over the winter 2021 – 2022. This states that the government are supporting a national recruitment campaign with a focus on social media and a younger audience, and working to establish minimum terms and conditions for existing staff. A budget of £12 billion, an increase of £7 million on last year, is being provided to support the wellbeing of health and social care staff. This includes targeted support to the primary and community care and social care workforce of £2 million.

A workstream will be developed on the wellbeing of those working in social care/social work as part of the new National Wellbeing Programme to be implemented from autumn 2021. The Workforce Specialist Service, launched in February 2021, also provides tailored, confidential mental health support to regulated staff across the NHS and social care workforces.

Up to £48 million of funding will be made available to enable employers to update the hourly rate of Adult Social Care Staff offering direct care. The funding will enable an increase from at least £9.50 per hour to at least £10.02 per hour, which will take effect from December 1, 2021.

The Social Care Staff Support Fund has been extended to the end of March 2022 to continue to ensure that social care workers who are ill with COVID-19, or self-isolating in line with public health guidance, receive their normal income for that period.

Update for: Scotland (UK)   Last updated: March 29th, 2022   Contributors: Jenni Burton  |  David Henderson  |  David Bell  |  Elizabeth Lemmon  |  

3.06. Support for care sector staff and measures to ensure workforce availability 

Results from a survey collected in early 2020 from 163 care staff across the UK illustrated concerns about workforce shortages and availability have been reported as a major factor for poor mental well-being and a general negative experience of working in care in the early stages of the pandemic. Another cause for stress and anxiety was the increased workload, which is likely to be due to extra measures taken to reduce the spread of the virus and increased staff absences (The Queen’s Nursing Institute, 2020).

References:

Queen’s Nursing Institute. (2020). The Experience of Care Home Staff During Covid-19. A Survey Report by The QNI International Community Nursing Observatory. July. https://www.qni.org.uk/wp-content/uploads/2020/08/The-Experience-of-Care-Home-Staff-During-Covid-19-2.pdf [accessed 11/10/2020]

Update for: United Kingdom   Last updated: March 24th, 2022   Contributors: Daisy Pharoah  |  

3.07. Infection Prevention and Control measures in the Long-Term Care sector: guidance, support and implementation

Overview of Government Guidance

Guidance for home care providers was provided relatively late in the pandemic. On April 27, 2020, Public Health England issued guidance on PPE use for care workers providing domiciliary care. The government published wider guidance for domiciliary care providers on May 22, 2020, much later than equivalent guidance for other long-term care settings was issued. This covered PPE, shielding of clinically vulnerable people, hospital discharge, and government and local authority support. The guidance has continued to be updated, including for providers to divide the people they care for into ‘care groups’ and allocate teams of staff to provide care specifically to those care groups.

Published on November 3, 2021, the Adult social care: COVID-19 winter plan 2021 to 2022 sets out the key elements of national support available for the social care sector for winter 2021 to 2022. This will provide £388.3 million in further funding to support IPC, testing, and vaccination uptake in adult social care settings.

Updated on November 24, 2021, the UK IPC COVID-19 guidance for the winter period 2021 to 2022 supersedes the previous guidance for maintaining services within health and care settings. Recommendations for universal use of face masks for staff and face masks/coverings for all patients/visitors are to remain as an IPC measure within health and care settings over the winter period. This is likely to be until at least March/April 2022.

Guidance for Unpaid Carers

The government issued guidance for unpaid carers, which recommends that carers develop an emergency plan with the person they care for in case the carer becomes unable to continue to provide support, to follow hygiene rules, and to maintain their own health. Additionally it sets out how to react in case the person with care needs or the carer themselves develop symptoms of COVID-19.

Guidance for Carers Supporting People with Intellectual Disabilities

Guidance for unpaid carers of adults with intellectual disabilities and autistic adults is very similar to the general advice for unpaid care (published on April 24, 2020), and was last updated on 24 August 2021 to cover the lifting of restrictions and new guidance on self-isolation. There are, however, specific points raised around communication and coping with bereavement.

As of December 2021, government guidance for care staff supporting adults with intellectual disabilities and autistic adults was last updated on August 24, 2021, which links to a range of other relevant guidance and resources. This includes more detailed guidance from the Social Care Institute for Excellence on supporting autistic people and people with intellectual disabilities, including guidance for social workers and occupational therapists, guidance for care staff, and guidance for carers and family.

Guidance for People with Intellectual Disabilities

Government guidance has not always been accompanied by accessible versions for people with intellectual disabilities, autistic people, and family members, and several NGOs (including some financially supported by the government for this purpose) have been producing easy-read and other accessible information, resources and guidance guidance. Interviews with people with intellectual disabilities across the UK suggest that people are most likely to gain useful information about COVID-19 and associated restrictions from television news, with people rarely accessing government websites for guidance.

Implementing guidance: Experiences of Care Home Staff

The scant nature of care home-specific guidance during the early stages of the pandemic was highlighted in a study by Spilsbury et al. (2021), who analysed the contents of a WhatsApp group to capture the nature of uncertainties and organisational questions expressed by members. The self-formed WhatsApp group was comprised of 250 care home staff in the early stages of the pandemic to facilitate peer-support and information-sharing. Results of the study reveal that staff faced a wide range of uncertainties (n = 119) but the majority (n = 49) were about infection control and prevention, including uncertainties pertaining to PPE, isolation of residents, and zoning of residents and/or staff. More than one third (38%) of these questions or uncertainties could have been easily resolved through the availability of factsheets or targeted guidelines The study illustrates that the basic information needs of care home staff were not satisfied in the early stages of the pandemic. This sits in contrast to the proliferation of – sometimes conflicting – guidance during the later stages of the pandemic (Hinsliff-Smith et al., 2020).

Nyashanu et al. (2020) collected data through interviews with forty healthcare workers from nursing homes (n = 20) and domiciliary care agencies (n = 20) in the English Midlands to explore triggers of mental health problems, and found that a lack of guidance from central government was a key trigger of anxiety and stress for this workforce in the first phase of the pandemic. Other triggers included unsafe hospital discharges to care homes (of patients who then tested positive for COVID-19) and fear of infection and infecting others.

References:

Hinsliff-Smith, K., Gordon, A., Devi, R., & Goodman, C. (2020). The COVID-19 Pandemic in UK Care Homes – Revealing the Cracks in the System. The Journal of Nursing Home Research, 6, 58–60. https://doi.org/10.14283/JNHRS.2020.17

Nyashanu, M., Pfende, F., & Ekpenyong, M. S. (2020). Triggers of mental health problems among frontline healthcare workers during the COVID-19 pandemic in private care homes and domiciliary care agencies: Lived experiences of care workers in the Midlands region, UK. Health & Social Care in the Community. https://doi.org/10.1111/HSC.13204

Spilsbury, K., Devi, R., Griffiths, A., Akrill, C., Astle, A., Goodman, C., Gordon, A., Hanratty, B., Hodkinson, P., Marshall, F., Meyer, J., & Thompson, C. (2021). Seeking Answers for Care Homes during the COVID-19 pandemic (COVID SEARCH). Age and Ageing, 50(2), 335–340. https://doi.org/10.1093/AGEING/AFAA201

Update for: England (UK)   Last updated: March 24th, 2022   Contributors: William Byrd  |  Chris Hatton  |  Daisy Pharoah  |  

3.07.01. Measures in relation to transfers to and from hospital, from community to care homes and between settings

One of the most controversial policy decisions taken at an early stage in the management of the coronavirus crisis was the rapid discharge of older patients from hospitals to care homes around the country without testing for COVID-19. The British Medical Journal has referred to this as a ‘reckless policy’, a sentiment echoed by the Public Accounts Committee. On March 17, 2020, the Chief Executive of the NHS instructed managers to urgently discharge all hospital patients who were medically fit to leave in order to free up a substantial number of hospital beds. Discharges, including to care homes, may already have been taking place at this point in readiness for the expected surge in COVID-19 admissions.

Guidance issued on March 19, in support of hospital discharge arrangements, announced that the existing North of England Commissioning Support (NECS) care home tracker, designed to facilitate rapid searches for available capacity in care homes, would be expanded to cover all care homes across England. All care home providers were to sign up and use the tracker to identify vacancies from March 23. Even if the available care home was not their first choice, patients were to be moved to a care home as soon as possible and could be moved to their preferred care home afterwards. The guidance also outlined funding to provide care for people discharged from hospital into institutional care settings irrespective of whether a care assessment had been completed or where their ordinary residence was.

Care homes were to receive funding out of the NHS COVID-19 budget to expand their capacity to provide care. Funding to support people leaving hospital was renewed in August, with £588 million being allocated to the NHS to pay for additional support and rehabilitation for up to 6 weeks. At this time, testing capacity was limited and available primarily for patients in critical care and those requiring hospital admission with symptoms of pneumonia, acute respiratory stress syndrome, or flu like illness. The guidance published on April 2 was explicit that ‘Negative tests are not required prior to transfers / admissions into the care home’.

The National Audit Office (2020) estimated that around 25,000 people were discharged from hospitals to care homes between March 17 and April 15, 2020. Using an approach which also accounted for discharges for new as well as existing residents of care homes, the Health Foundation (Hodgson et al. 2020) estimated that, for the period of March 17 to April 30, 46,700 people had been discharged to care homes, 7,700 fewer than in previous years. However, the pattern of discharges differed between residential care and nursing homes. While residential care homes saw a decrease in discharges (with 12,400 discharges) compared to previous years, nursing homes saw an increase with 17,000 discharges.

National bodies representing care homes complained about homes being pressured to accept residents that had not been tested. The guidance published on April 2, stated that “patients can be safely cared for in a care home if this guidance is followed”. However,  clinicians noted in press reports that it was a “major error” to assume “that care homes could cope with isolating patients and infection control measures in the same way a hospital could”. Press also reported that the Care Quality Commission had been informed by care home managers that several hospitals discharged people to their care home despite suspecting, or even knowing, they were infected. NHS Providers, the membership organisation for NHS hospitals, has strongly rejected the suggestion that hospitals ‘knowingly’ transferred infected patients to care homes, but does acknowledge that some asymptomatic patients may have been transferred early, though “not in large numbers”. Evidence is lacking for any accurate assessment of the extent to which hospital discharges in this period led to transmission of infection into care homes and genomic analyses suggest multiple routes of ingress into care homes.

DHSC (2020) published the COVID-19 adult social care action plan on April 15, 2020, where the government declared that it was “mindful that some care providers are concerned about being able to effectively isolate COVID-19 positive residents”, and in this context set out a commitment to test all residents prior to their admission to care homes, including on discharge from hospital. In cases where the results of the test cannot be obtained in time for discharge, patients should be cared for in isolation as if they had tested positive for COVID-19. Asymptomatic patients who have tested negative should also be cared for in isolation for 14 days. The same was recommended for patients with COVID-19 symptoms and a positive test result where the patient needed to be discharged from acute NHS care within the 14-day period since the beginning of the symptoms. The action plan recognised that not all providers will be able to accommodate these individuals through appropriate isolation or cohorted care. This was supported by a survey of 43 English care home managers (Rajan et al. 2020). The action plan (DHSC, 2020) noted that in these circumstances the individual’s local authority will be asked to secure alternative appropriate accommodation and care for the remainder of the required isolation period. For admissions from the community, it is assumed they will be tested prior to admission, and in consultation with the family the care home can decide whether isolation is appropriate.

Published on November 3, 2021, the Adult social care: COVID-19 winter plan 2021 to 2022 sets out the key elements of national support available for the social care sector for winter 2021 to 2022. A further £478 million to continue enhanced hospital discharge support until March 2022 will be provided (DHSC, 2021).

References:

DHSC (2020). COVID-19: Our Action Plan for Adult Social Care. Retrieved from: publishing.service.gov.uk; Accessed on 15/03/2022

DHSC (2021). Adult social care: COVID-19 winter plan 2021 to 2022. Retrieved from GOV.UK (www.gov.uk); Accessed on 15/03/2022

Hodgson, H. et al. (2020). Adult social care and COVID-19: Assessing the impact on social care users and staff in England so far. The Health Foundation briefing. Accessed on 15/03/2022

National Audit Office (2020). Readying the NHS and adult social care in England for COVID-19. NAO Report.

Rajan, S, et al.. (2020). Did the UK Government Really Throw a Protective Ring Around Care Homes in the COVID-19 Pandemic? Journal of Long-Term Care, pp. 185–195. DOI: https://doi.org/10.31389/jltc.53

Additional sources: 

Scally, G., Jacobson, B., & Abbasi, K. (2020). The UK’s public health response to covid-19. BMJ, 369. DOI:https://doi.org/10.1136/BMJ.M1932

Readying the NHS and social care for the COVID-19 peak – Public Accounts Committee – House of Commons (parliament.uk)

urgent-next-steps-on-nhs-response-to-covid-19-letter-simon-stevens.pdf (england.nhs.uk)

More than half a billion pounds to help people return home from hospital – GOV.UK (www.gov.uk)

‘Perfect storm’ say care homes told to accept people with coronavirus

Update for: England (UK)   Last updated: March 15th, 2022

3.07.01. Measures in relation to transfers to and from hospital, from community to care homes and between settings

The adult social care – winter preparedness plan: 2021-22 sets out the measures that will be applied across the adult social care sector to meet the challenges over the winter 2021 – 2022. Multi-disciplinary teams (MDTs) within health and social care will continue to play a critical role in keeping people well and independent and delivering the right care at home or in the community to prevent unnecessary hospital admission through accessing a range of health, social care and other community services. Extra funding will be provided to support the strengthening of Multi-Disciplinary Working across the health and social care system to support discharge from hospital and to ensure that people can be cared for as close to home as possible, reducing avoidable admissions to hospital. This includes up to £15 million for recruitment of support staff and £20 million to enhance MDTs this year and recurring (Source: www.gov.scot).

The plan includes funding of £40 million for 2021/22 to enable patients currently in hospital to move into care homes and other community settings, on an interim basis, to ensure they can complete their recovery in an appropriate setting. The Home First approach will be built on through the launch of an improvement programme (in collaboration with the Centre for Sustainable Delivery). The Discharge without Delay Programme will engage teams across the whole patient journey, aiming to ensure all delay is prevented where possible and placing a strong focus on discharge to assess. An additional £2.6 million has been shared between ten health boards so they can continue to develop Hospital at Home services to avoid admissions to hospital and we will work with Health Improvement Scotland (HIS) colleagues to monitor the progress of this work.

Update for: Scotland (UK)   Last updated: March 24th, 2022

3.07.02. Approach to isolation of people with confirmed or suspected Covid-19 infections in care homes

Guidance

There have been two major difficulties in identifying and isolating infected individuals effectively in care homes in England. First, guidance issued to care homes focused only on people who were displaying symptoms (initial guidance only mentioned a persistent cough and fever as symptoms). It took a long time for official guidance to consistently recognize the potential for pre-symptomatic or asymptomatic transmission. Guidance on identifying residents and staff who may have been in contact with persons who had the virus and subsequent preventive isolation became available on April 2, 2020.

Ahead of the second wave, the government set up a scheme to prepare ‘designated settings’ that could provide safe isolation for people who were discharged from hospital while positive for COVID-19 and who needed to move to a care home. The settings had a to meet a set of standards to deliver safe care for COVID-19 positive residents.

Evidence on implementation difficulties

The ability of care homes to implement existing IPC guidance was hampered by a lack of access to testing (tests for asymptomatic residents and staff only started to be available after April 28, 2020) and PPE, staff shortages, and facilities that were not suitable for effective isolation or cohorting (Rajan et al., 2020). Where care homes are not able to implement adequate isolation or cohort policies, it is the responsibility of the local authority to secure alternative accommodation for the isolation period, drawing on the £1.3 billion discharge funding.

References:

Rajan, S., Comas-Herrera, A., and Mckee, M. (2020). Did the UK Government Really Throw a Protective Ring Around Care Homes in the COVID-19 Pandemic?. Journal of Long-term Care, (2020), 185–195. DOI: http://doi.org/10.31389/jltc.53

House, S., Fewster, E. (2020). Asymptomatic and pre-symptomatic transmission in UK care homes – and infection, prevention and control (IPC) guidance – an update. Retrieved from:https://ltccovid.org/2020/06/12/

Update for: England (UK)   Last updated: March 24th, 2022   Contributors: William Byrd  |  

3.07.03. Visiting and unpaid carer policies in care homes

Current policy

On the 27th January 2022 the Department of Health and Social Care (DHSC) announced that on the 31st January the limit on number of visitors allowed into care homes and also any limits on the number of visits would be lifted. Essential care givers will continue to be able to visit even if a care home has an outbreak.

The decision was announced on the same day that restrictions were listed for the general population. It was accompanied by the announcement of a reduction in the period of self-isolation for care home residents and a reduction in the period of outbreak management rules. Data on the very high share of care home residents who had a booster jab by that date (86.5%) and evidence showing that boosters are highly effective in preventing hospitalisations were cited to support this decision.

The guidance as updated on the 31st of January 2022 is available here.

Previous policies

The initial guidance in England published on March 13, 2020, advised against visits by people who had suspected COVID-19 or were feeling unwell. The main care home chains stopped non-essential visits around that time. Although no formal ban on visits to care homes was issued, the advice was not to visit except in exceptional (usually end of life) situations. The Prime Minister also announced on March 16 that the physical distancing measures should also apply to care homes. Guidance on family visits was issued on the July 22, linking the visiting policy to local levels of risk of transmission and advising that visits were limited to a ‘single constant visitor’.

On October 1, the DHSC announced a second round of funding worth £546 million for the Adult Social Care Infection Control Fund. This is to be extended until March 2021, following on from May 2020, when the fund was initially worth £600 million. The purpose of this fund is to support adult social care providers to reduce the rate of COVID-19 transmission within and between care settings, which includes enabling safe visiting of care homes.

On October 13, the Care Minister announced the government’s intention to pilot a care home visitor scheme, in which designated visitors would be recategorized as ‘key workers’ and given priority access to weekly rapid antigen tests and PPE.

Following the announcement of the second national lockdown, more than 60 care organisations collectively called on November 3, 2020, for safe visits to care homes to continue. A similar call was made by ADASS. In response to the ongoing restrictions, a high court judge ruled on November 3, that visits to care homes were legal. Following this, government guidance on visiting arrangements were updated on November 5, advising directors of public health and providers to facilitate visiting where possible in a ‘risk-managed way’. There is ongoing concern as to whether the arrangements are sufficiently flexible and sensitive to the needs of people in care homes and their families.

On December 1, DHSC released guidance on arrangements for visiting out of the care home, which was then updated on March 8, 2021. This stated that visits out of care homes should only be considered for care home residents of working age, and although regulations could technically allow residents to form a support bubble with another household, this is not recommended. This suggested that the assumption should be that visiting is allowed unless there is evidence to take a more restrictive approach, where the needs of the individual are balanced against a consideration of the risks to others in the home. For visits to take place, the residents and all members of the household must have had a negative result from a lateral flow device immediately preceding the visit. It is suggested that those involved in the visit should limit the number of people they meet for 2 weeks prior to the visit out. Upon returning to the care home, the resident should self-isolate for 14 days. In the event of an outbreak in a care home, all outward visiting should be immediately stopped.

On January 21, 2021, DHSC released guidance for care homes during the winter. This stated that visits to care homes could take place with arrangements such as substantial screens, visiting pods, or behind windows. This stipulated that end-of-life visits should always be supported.

On March 12, Nuffield Trust released analysis explaining that there was no mention of social care in the budget announced by the Chancellor. Short-term emergency support in the form of the Rapid Testing Fund was crucial in enabling safe visits to occur in care homes, because it provided funding to allow every visitor to be tested. This support is due to expire at the end of March.

On March 18, LaingBuisson announced that an extra £341 million was to be provided to support adult social care with the costs of infection prevention control and testing so that visits can be carried out safely. This commitment was for a three-month period. There was no mention of an extension to the Workforce Capacity Fund.

Since May 17, every care home resident can nominate up to 5 named visitors who will be able to enter the care home for regular visits (and will be able to visit together or separately as preferred). Residents with higher care needs can choose to nominate an essential care giver who may visit the home to attend to essential care needs. The 5 named visitors may include an essential caregiver (where they have one) but excludes babies and preschool-aged children (as long as this does not breach national restrictions on indoor gatherings). To reduce the risk of infection, residents can have no more than 2 visitors at a time or over the course of one day (essential caregivers are exempt from this daily limit. In August, the guidance removed the advice on the number of ‘named visitors’ and did not limit the number of visitors a resident can have in a single day. The essential caregiver should be able to visit even if there is an outbreak in the home (except where carer or resident are COVID-19 positive), or if the caregiver is not fully vaccinated.

Updated guidance published on November 25, puts more emphasis on visits taking place wherever is most comfortable for the resident and that physical contact should be supported to help health and wellbeing. Visiting restrictions due to an outbreak should only be in place for 7 to 8 days following negative testing. Advice around flu and other transmissible viruses has also been added, along with guidance on how care homes can support residents on visits outside of the care home.

Update for: England (UK)   Last updated: March 24th, 2022   Contributors: William Byrd  |  Adelina Comas-Herrera  |  

3.08. Access to testing and contact tracing for people who use and provide Long-Term Care

Limitations on testing capacity meant that the initial workforce testing strategy focused on NHS workers with symptoms. This was extended to social care workers (with symptoms) from April 15, 2020, and on April 28, a policy of one-off whole home testing was announced for all staff and residents of care homes with residents over 65 or with dementia. An online portal was launched on May 11 to help care homes arrange deliveries of test kits.

Although testing capacity was increasing, this was not without problems. The BBC reported that on April 22, 159 out of 210 care providers contacted about testing reported that none of their staff had received a test. On May 12, the Guardian reported that care home operators accused the government of “a complete system failure” regarding the promised testing in care homes. According to this article, only tens of thousands had been tested so far, leaving many vulnerable people at risk. Different government agencies were accused of passing responsibilities to each other. A survey of 43 English care home managers, which was conducted at the end of May and early June 2020, found that only 40% had accessed testing of asymptomatic residents and 50% of asymptomatic staff. At that time, only 36% of residents had been tested, with many describing a chaotic and poorly co-ordinated service, and only 10% of care homes surveyed had successfully tested all residents in their care home (Rajan et al. 2020).

On June 8, 2020, the Government announced that all remaining adult care homes would be able to access whole care home testing for all residents and asymptomatic staff through the digital portal, including adult care homes catering for adults with intellectual disabilities or mental health issues, physical disabilities, acquired brain injuries, and other categories for younger adults under 65 years old. It should be noted that these ‘whole care home’ testing arrangements do not apply to supported living settings, extra-care settings, and domiciliary care. In these situations, individual tests can be applied for through self-referral. From 3 July, care home staff were promised weekly testing, but domiciliary care staff were still only eligible for free testing if symptomatic, as the general population.

In light of advice from the Government’s Scientific Advisory Group for Emergencies (SAGE) and results from the Vivaldi 1 study, regular retesting of staff and residents in care homes for over 65s and those with dementia was announced to be implemented from early July. The Times reported that this had been delayed until September, with promises of new rapid point of care tests, although these had yet to be formally approved and questions remained about the most suitable and safe tests for such a vulnerable setting.

On December 23, the Department of Health and Social Care (DHSC) announced £149 million to support the rollout of Lateral Flow Device (LFD) testing in care homes. Local authorities should pass on 80% of this to care homes on a per bed basis, which must be within the local geographical area. The other 20% should be used to support care providers to implement increased LFD testing, allocated at the discretion of the local authority. Care homes currently have access to 3 tests per week for their staff, with daily testing for 7 days in the event of a positive case. Care homes will have additional LFDs to test individuals working in more than one setting before the start of every shift.

On February 16, 2021, DHSC published guidance announcing that weekly COVID-19 testing is to be made available to personal assistants working in adult social care in England. After testing positive, a person does not need to test again for 90 days unless they become symptomatic. This guidance gives personal assistants responsibility for informing their employers if they receive a positive result.

On January 17, 2021, DHSC announced a £120 million Workforce Capacity Fund to help local authorities to boost staffing levels, so that safe and continuous care is achieved by all providers of adult social care. If the specific way in which staff capacity is strengthened means that they do not have access to routine asymptomatic testing or LFD testing, then it is suggested that the local authority could use their allocation of LFD tests for routine testing.

On March 5, DHSC published guidance on LFD testing in adult social care settings. This stipulated that it is necessary to obtain consent before residents and staff are tested and their results shared. If a person receives a positive result from a LFD, then they will need to take a confirmatory PCR test and immediately self-isolate. With a negative test, the person can stop self-isolating but must continue to follow national and local rules and guidelines.

On March 12, Nuffield Trust released analysis explaining that there was no mention of social care in the budget announced by the Chancellor. Short-term emergency support in the form of the Rapid Testing Fund was crucial in enabling safe visits to occur in care homes, which is due to expire at the end of March.

On March 18, LaingBuisson announced that an extra £341 million was to be provided to support adult social care with the costs of infection prevention control and testing so that visits can be carried out safely. This commitment was for a three-month period. There was no mention of an extension to the Workforce Capacity Fund.

Published on November 3, the Adult social care: COVID-19 winter plan 2021 to 2022 sets out the key elements of national support available for the social care sector for winter 2021 to 2022. A further £388.3 million in further funding to support IPC, testing and vaccination uptake in adult social care settings will be provided. Regular asymptomatic COVID-19 testing will be maintained throughout winter for all staff and unpaid carers in adult social care, as well as more intense testing regimes in settings deemed higher risk, in line with clinical advice. Additionally, £126.3 million will be provided to continue to support the sector to deliver COVID-19 testing from October 2021 to the end of March 2022.

Access to testing: impact on mental health

Nyashanu et al. (2020) collected data through interviews with forty healthcare workers from nursing homes (n = 20) and domiciliary care agencies (n = 20) in the English Midlands in the early phase of the pandemic (before May 2020) to explore triggers of mental health problems. Participants reported experiencing distress and anxiety caused by unreliable testing and delayed or false results. Delayed results meant that healthcare workers who had been tested were delayed in their return to work, which led to further staff shortages – another cause of stress.

References:

Nyashanu, M., Pfende, F., & Ekpenyong, M. S. (2020). Triggers of mental health problems among frontline healthcare workers during the COVID-19 pandemic in private care homes and domiciliary care agencies: Lived experiences of care workers in the Midlands region, UK. Health & Social Care in the Community. https://doi.org/10.1111/HSC.13204

Rajan, S., Comas-Herrera, A. and Mckee, M., 2020. Did the UK Government Really Throw a Protective Ring Around Care Homes in the COVID-19 Pandemic?. Journal of Long-Term Care, (2020), pp.185–195. DOI: http://doi.org/10.31389/jltc.53

Update for: England (UK)   Last updated: March 24th, 2022   Contributors: William Byrd  |  Chris Hatton  |  Daisy Pharoah  |  

3.09. Access to Personal Protection Equipment (PPE) in the Long-Term Care sector

Overview

The government has faced criticism and legal challenges for failures in the availability and distribution of PPE, particularly in the early phase of the pandemic. There was a significant shortage of PPE (face masks, aprons, gloves and visors). Furthermore, the central stockpile was designed for a flu pandemic. According to editorial published in British Medical Journal (Scally et al. 2020) , the government “failed to protect staff in the NHS and social care by not delivering sufficient amounts of personal protective equipment (PPE) of the right specification, again deviating from WHO advice”. Directors in the social care sector specifically claimed that “a critical lack of PPE and testing of social care staff and service users is putting them at unnecessary risk of exposure”. Resentment about prioritisation of the NHS for distribution of PPE has been expressed.

Policy Measures

Initial steps announced on March 18, 2020, included the distribution of PPE to every care home and care home provider to ensure that they had at least 300 fluid repellent face masks for immediate needs, followed by a further tranche of items of PPE in early April. However, the government did acknowledge PPE supply shortages and published a PPE plan on April 15 with the goal that “everyone should get the personal protective equipment (PPE) they need”.

In the social care sector, providers have traditionally organised the PPE they required through the market. The adult social care action plan announced that the government was now stepping in with arrangements to support the supply and distribution of PPE. A parallel supply chain has been established for emergency PPE provision, involving new logistics networks and support from the army and including a national supply disruption response (NSDR) system to respond to emergency PPE requests, and a 24/7 helpline for providers who have an urgent requirement.

On September 30, the government announced that they were extending existing infection control funding with an additional £388.3 million. The funding is intended to help providers with PPE costs, amongst other needs.

Published on November 3, 2021, the Adult social care: COVID-19 winter plan 2021 to 2022 sets out the key elements of national support available for the social care sector for winter 2021 to 2022. This set out that free PPE for COVID-19 needed to the adult social care sector would continue to be provided until the end of March 2022, with sufficient stock to cope throughout winter. Following a consultation on extending free PPE to the health and care sector after the current end date of 31 March 2022, on 13th January 2022 the government announced that free PPE will continue to be provided to health and care providers until 31st March 2023 or until infection control measures are withdrawn.

Issues with PPE

The need for appropriate PPE in care homes is of critical importance for the safety of residents and staff, particularly in light of the fact that care homes were accepting hospital discharges who were positive for COVID-19.  A survey launched by The Queen’s Nursing Institute (2020) in the early weeks to the pandemic found that 21% of respondents (from across the UK) had accepted COVID-19 positive patients into their facilities. 43% reported accepting people whose COVID-19 status was unknown. Although most respondents (74%) reported that PPE was made available by their employers, some were not provided with PPE and had to improvise by obtaining it themselves or making it. Furthermore, even for those who were provided with PPE, there was fear and anxiety around whether it was adequate to mitigate the spread of COVID-19 and keep them and their residents safe.

Announcements by the government about the number of items of PPE being delivered have been questioned. According to the BBC, over half of the 1.2 billion items of PPE the Department of Health announced on May 10 for health and social care providers in England were surgical gloves, with gloves individually counted rather than in pairs and faulty equipment subsequently being recalled. It is not clear how the protective equipment delivered was divided between health and social care and there have been suggestions that delivery systems have been failing to provide to care homes, requiring them to secure their own supplies individually. One example reported was that of a care provider who was provided with 400 face masks while requiring over 35,000 masks a week. In a survey of English care homes at the end of May and early June, 70% of care home managers reported insufficient PPE supplies, with 34% of providers purchasing supplies directly from abroad.

In addition to being captured in the media, dissatisfaction with PPE provision and policy has come through in some academic literature. A qualitative study published in February 2021 obtained results through interviews with ten care home managers in the East Midlands of England. Participants felt that control over pandemic response was taken away from care home managers – who were normally quite competent at managing the supply chain – when PPE supplies were centralised. This occurred in spite of the fact that they were responsible for making high stake decisions in circumstances defined by multiple and sometimes conflicting sources of information (Marshall et al., 2021).

References:

Scally, G. et al. (2020). The UK’s public health response to covid-19. BMJ 2020; 369 doi: https://doi.org/10.1136/bmj.m1932

Marshall, F., Gordon, A., Gladman, J. R. F., & Bishop, S. (2021). Care homes, their communities, and resilience in the face of the COVID-19 pandemic: interim findings from a qualitative study. BMC Geriatrics, 21(1). https://doi.org/10.1186/S12877-021-02053-9

Queen’s Nursing Institute. (2020). The Experience of Care Home Staff During Covid-19. A Survey Report by The QNI International Community Nursing Observatory. July. https://www.qni.org.uk/wp-content/uploads/2020/08/The-Experience-of-Care-Home-Staff-During-Covid-19-2.pdf [accessed 11/10/2020]

Update for: England (UK)   Last updated: March 24th, 2022   Contributors: William Byrd  |  Nina Hemmings  |  Adelina Comas-Herrera  |  Daisy Pharoah  |  

3.09. Access to Personal Protection Equipment (PPE) in the Long-Term Care sector

Issues with PPE provision has come through in some recent academic literature. For example, a study by Greene et al. (2020), which found that lack of reliable access to PPE in the first phase of the pandemic (before July 2020) was a robust predictor of clinically significant mental distress in health and care workers across the UK. This highlights that the impacts of unreliable access to PPE go beyond compromising physical health of this workforce.

References:

Greene, T., Harju-Seppänen, J., Adeniji, M., Steel, C., Grey, N., Brewin, C. R., Bloomfield, M. A., & Billings, J. (2020). Predictors and rates of PTSD, depression and anxiety in UK frontline health and social care workers during COVID-19. MedRxiv, https://pubmed.ncbi.nlm.nih.gov/33968317/

Update for: Northern Ireland (UK)   Last updated: March 24th, 2022   Contributors: Daisy Pharoah  |  

3.09. Access to Personal Protection Equipment (PPE) in the Long-Term Care sector

The Adult Social Care – Winter Preparedness Plan: 2021-22 set out the measures that will be applied across the adult social care sector to meet the challenges over the winter 2021 – 2022. Following a review of the existing PPE support arrangements, it has been confirmed that the PPE Hubs and PPE Support Centre, which provide free PPE to providers across the sector where supply routes fail, and to unpaid carers who are unable to access PPE through their normal routes, will continue to operate until end March 2022. For care providers, payments for PPE over and above usual amounts as a result of the pandemic have also been extended to end March 2022 as part of the Financial Support for Adult Social Care Providers (see also Extending PPE access to all social care providers).

Update for: Scotland (UK)   Last updated: March 29th, 2022   Contributors: Jenni Burton  |  David Henderson  |  David Bell  |  Elizabeth Lemmon  |  

3.09. Access to Personal Protection Equipment (PPE) in the Long-Term Care sector

Availability of PPE: impact on mental health

The need for appropriate PPE in care homes is of critical importance for the safety of residents and staff, particularly in light of the fact that care homes were accepting hospital discharges who were positive for COVID-19. However, issues with PPE provision has also come through in some recent literature. A survey launched by The Queen’s Nursing Institute (2020) in the early weeks to the pandemic found that 21% of respondents from across the UK had accepted COVID-19 positive patients into their facilities. 43% reported accepting people whose COVID-19 status was unknown. Although most respondents (74%) reported that PPE was made available by their employers, some were not provided with PPE and had to improvise by obtaining it themselves or making it. Furthermore, even for those who were provided with PPE, there was fear and anxiety around whether it was adequate to mitigate the spread of COVID-19 and keep them and their residents safe. Results from this survey were collected in early 2020 from 163 care staff across the UK.

A study by Greene et al (2020) found that lack of reliable access to PPE in the first phase of the pandemic (before July 2020) was a robust predictor of clinically significant mental distress in health and care workers across the UK. This highlights that the impacts of unreliable access to PPE go beyond compromising physical health of this workforce.

References:

Greene, T., Harju-Seppänen, J., Adeniji, M., Steel, C., Grey, N., Brewin, C. R., Bloomfield, M. A., & Billings, J. (2020). Predictors and rates of PTSD, depression and anxiety in UK frontline health and social care workers during COVID-19. MedRxiv, 2020.10.21.20216804. https://doi.org/10.1101/2020.10.21.20216804

Queen’s Nursing Institute. (2020). The Experience of Care Home Staff During Covid-19. A Survey Report by The QNI International Community Nursing Observatory. July. https://www.qni.org.uk/wp-content/uploads/2020/08/The-Experience-of-Care-Home-Staff-During-Covid-19-2.pdf [accessed 11/10/2020]

Update for: United Kingdom   Last updated: March 24th, 2022   Contributors: Daisy Pharoah  |  

3.10. Use of technology to compensate for difficulties accessing in-person care and support

A considerable proportion of unpaid carers in the UK reported to have used technology for social contacts, a smaller proportion for health and long-term care services. The use of technology for remote support received mixed feedback. A report by Age UK (2021) has found that there was no significant change in the use of digital engagement during the first few months of the pandemic. The main barrier reported for peopled aged 75 and older was ‘lack of digital skills’.

A press release by the Department of Health and Social Care (DHSC) on April 24, 2020, announced that they, together with the Ministry for Housing Communities and Local Government, had awarded up to £25,000 to 18 innovative digital solutions as part of the TechForce19 challenge. Among these, one app that received funding aims to ‘help carers identify health risks and deterioration within elderly communities’.

Research by Lariviere et al. (2020) accompanying the virtual cuppa project, which offered unpaid carers the possibility to connect virtually for half an hour on weekdays with others in similar situations, facilitated by a professional carer coach, found that over time, carers developed friendships with other members participating in the project, shared resources and experience, and that the virtual cuppa group became “a resource in its own right to develop individual resilience” (p.22).

The digital lifeline initiative during the COVID-19 crisis, funded by the Department for Digital, Culture, Media and Sport (DCMS), enabled over 5,000 adults with intellectual disabilities in England to receive internet-enabled devices, with data and local support to help people learn how to use their device, with promising impact in the short term (Mackey et al. 2022).

Published on November 3, 2021, the Adult social care: COVID-19 winter plan 2021 to 2022 sets out the key elements of national support available for the social care sector for winter 2021 to 2022. This sets out continued support for care providers to make best use of technology to support remote monitoring, enable secure online communications, and enable people within care homes to remain connected with friends and families. NHSX, a joint unit of DHSC and NHS England, will provide a package of support over the winter to help care providers make the best use of digital tools, safely and securely. A new ring-fenced care provider Digitising Social Care fund of up to £8 million will be available. Additionally, there will be implementation funding support to all 7 NHSEI regions to significantly increase levels of technology-enabled remote monitoring within care homes. Plans have been agreed for over 100,000 people living in a care home to receive digitally enabled support by March 2022.

References: 

Age UK (2021). Digital inclusion and older people – how have things changed in a Covid-19 world? Age UK briefing paper, Retrieved from: ageuk.org.uk briefing papers. Accessed on 24/03/2022

Mackay, J. et al. (2022). Digital Lifeline: A Qualitative Evaluation , Full evaluation report. Retrieved from: DCMS Digital Lifeline Fund: Evaluation Report Accessed on 24/03/2022

Giebel, C., Cannon, J., Hanna, K., Butchard, S., Eley, R., Gaughan, A., Komuravelli, A., Shenton, J., Callaghan, S., Tetlow, H., Limbert, S., Whittington, R., Rogers, C., Rajagopal, M., Ward, K., Shaw, L., Corcoran, R., Bennett, K., & Gabbay, M. (2020). Impact of COVID-19 related social support service closures on people with dementia and unpaid carers: a qualitative study. 25(7), 1281–1288. DOI:https://doi.org/10.1080/13607863.2020.1822292

Giebel, C., Hanna, K., Cannon, J., Eley, R., Tetlow, H., Gaughan, A., Komuravelli, A., Shenton, J., Rogers, C., Butchard, S., Callaghan, S., Limbert, S., Rajagopal, M., Ward, K., Shaw, L., Whittington, R., Hughes, M., & Gabbay, M. (2020). Decision-making for receiving paid home care for dementia in the time of COVID-19: A qualitative study. BMC Geriatrics, 20(1), 1–8. DOI:https://doi.org/10.1186/S12877-020-01719-0/TABLES/2

Lariviere, M et al. (2020). Caring during lockdown: Challenges and opportunities for digitally supporting carers. Research report, Retrieved from: 007_Aspect-Virtual-Cuppa-Report-4-compressed.pdf (shef.ac.uk); Accessed on 24/03/2022

Update for: England (UK)   Last updated: March 24th, 2022   Contributors: William Byrd  |  

3.11. Vaccination policies for people using and providing Long-Term Care

Latest data on COVID vaccinations among people using and providing social care in England

Detailed data on COVID vaccinations is published weekly by NHS England. By December 16 2021, it was reported that 95% of all eligible residents and 94.2% of staff in all care homes had been given a second COVID-19 vaccine dose. 77.9% of residents and 33.6% of care home staff had had a booster.

Among social care staff working for registered providers in other settings, including domiciliary care, 81.2% had two vaccine doses and 23.1% had had a booster.

For the 8.5 million people aged 16 to 64 who are identified as “at risk” or as carers, 83.6% had had two doses and 50.1% had had a booster. This group includes people with intellectual disabilities.

Vaccination rollout and social care

On November 27, 2020, Public Health England (PHE) published their COVID-19 vaccine guidance for health and social care workers. On December 7, NHS England (NHSE) published a standard operating procedure on vaccine deployment for care home staff. This gave care home providers the responsibility to inform their staff, organise logistics, and encourage vaccine uptake.

On December 20, NHSE published information stating that a roving model to deliver the vaccine in care home settings was to be deployed as soon as possible. On December 30, NHSE announced that vaccines should still be offered to older adults in care homes which have cases, although for those who are acutely unwell or within four weeks of the onset of COVID-19 symptoms, this should be temporarily deferred.

On December 30, the Department of Health and Social Care (DHSC) published information on vaccination priority groups. Previous publications by the Joint Committee on Vaccination and Immunisation (JCVI) had stated that the first priority group for receiving COVID-19 vaccinations were residents in care homes for older adults and their carers. Frontline social care workers, including those who work in hospice care, are to be included in the second priority group. Carers of those with an underlying health condition should be offered vaccines alongside these groups, which is group six unless the person they are caring for is in a higher group.

On January 7, 2021, NHSE published additional operational guidance, further to the guidance from December 30, 2020. This stated that by mid-January, NHS Trusts would be established as hospital hubs, which were the default provider of COVID-19 vaccinations for all healthcare and social care workers. On January 11, DHSC published an update to their vaccine delivery plan. This aimed to have offered a first vaccine to everyone in the top 4 priority groups by 15 February. This stated that local vaccination services had a responsibility to coordinate and deliver vaccination to people who were unable to attend a vaccination site, such as the homes of housebound individuals, and residential settings for people with intellectual disabilities or autism.

On January 13, NHSE published information regarding the next stage of the vaccine rollout in older adult care homes. The addition of the Oxford/AstraZeneca vaccine to the schedule from the w/c January 4 meant that smaller care homes could be vaccinated. First doses were expected to be administered to care home residents and staff by January 17, and by January 24 at the latest. This was to occur 8am to 8pm, 7 days a week. It was suggested that primary care networks (PCNs) had a responsibility to provide mutual aid to other PCNs to ensure that all care homes had been vaccinated by the end of the w/c January 18. On January 14, NHSE published an update outlining the next steps for eligible social care worker vaccination.

On January 26, the National Care Forum (NCF) published the results of a snapshot survey across 750 care homes for older people in England between January 25 and 26. Of these 750, 715 had achieved whole home vaccination, representing 95% vaccine take up. Whilst most organisations who responded noted that 50% or more of staff had been vaccinated, only 27% reported vaccination over 70% for their staff. The NHSE target to vaccinate all residents and staff by January 24 has been missed, and the next goal is the government objective of getting all those in JCVI groups 1-4 vaccinated by February 15. On February 15, the BBC reported the announcement from the Health Secretary that a third of social care staff in England had not had the COVID-19 vaccine. Everyone in the top four groups had been offered the COVID-19 vaccine.

On February 24, PHE reported that the JCVI had advised that all people on the GP Learning Disability Register were to be invited for vaccination as part of the JVCI group 6 (people with Down’s syndrome are included in group 4). On March 8, NHSE published an operating procedure relating to COVID-19 vaccine deployment for unpaid carers who will now be part of the JCVI cohort 6. Where the person they care for is part of the JCVI vaccine cohort 6, then they are able to receive their vaccination at the same time.

On March 10, Nuffield Trust released some analysis. This showed that by the end of February, fewer than 3 in 4 staff working in care homes for older adults had received their first dose. This showed regional variation, with rates highest in the North East and Yorkshire and lowest in London. Rates for other social care staff are even lower with fewer than 3 in 5 having had their first dose.

By August 29, it was reported that 95% of all eligible residents and 82% of staff in older adult (65+) care homes had been given a second COVID-19 vaccine dose. In England, 78.7% of all care homes had at least 80% staff and 90% residents vaccinated with at least one dose. Among younger adults living in care homes, 88.9% had been given a second dose.

From September 16, 2021, the government began rolling out booster vaccinations to those in JCVI cohorts 1 to 9 who received their second dose more than 6 months ago, and boosters are now being delivered and administered to older adult care home residents and staff within their homes.

Policy on mandatory vaccinations:

On March 22, The Telegraph reported that leaked details of a paper, ‘Vaccination as a condition of deployment in adult social care and health settings’, submitted to the COVID-19 Operations Cabinet sub-committee showed that the Prime Minister and the Health Secretary had requested that vaccinations become a legal requirement for care home workers. The legal change would be likely to affect England only, with health policy the remit of the devolved administrations in Wales, Northern Ireland, and Scotland. Only around a quarter of care homes in London, and half in other parts of England, have reached the level of vaccination among staff and residents deemed safe by government scientists, which SAGE set at 80% vaccination among staff and 90% among residents of a care home.

On August 4, it was announced that full COVID-19 vaccination would be mandatory for staff working in care homes by November 11, despite it being reported by the Guardian that there were concerns from providers that this may worsen existing staff shortages. Analysis of data reported by the Department of Health and Social care indicated that as of 26th October 2021, 39% of agency staff and 10% of directly employed staff deployed in care home settings had not yet received two doses of a covid-19 vaccine (Skills for Care, 2021).

Published on November 3, 2021, the Adult social care: COVID-19 winter plan 2021 to 2022 sets out the key elements of national support available for the social care sector for winter 2021 to 2022. This will provide £388.3 million in further funding to support IPC, testing, and vaccination uptake in adult social care settings. Following consultation, the government announced on November 9, 2021, that all frontline NHS and care staff, including volunteers, will also be required to be fully vaccinated against COVID-19 from April 1, 2022. From November 11, 2021, being fully vaccinated against COVID-19 will be a condition of deployment for people working or volunteering in care homes, unless they are exempt. These requirements will apply to all CQC-registered care homes in England that provide accommodation for persons who require nursing or personal care.

On the 31st January 2022, the Health and Social Care Secretary announced that the legal requirement for health and social care staff to be double vaccinated to work would be removed, subject to consultation and approval by Parliament. The announcement justifies this changed based on high levels of vaccination and boosters in the population and lower levels of hospitalisations and mortality. Health and social care professionals are still urged to get vaccinated and boosted but it is no longer mandatory. The care home sector has estimated that mandatory vaccinations contributed to over 30,000 care workers leaving the sector, at a time of acute workforce shortages (see section on workforce shortages during the pandemic).

References:

Skills for Care, (2020). The state of the adult social care sector and workforce in England. Retrieved from: skillsforcare.org.uk. Accessed on 24/03/2022

Update for: England (UK)   Last updated: March 24th, 2022   Contributors: William Byrd  |  Nina Hemmings  |  Chris Hatton  |  Adelina Comas-Herrera  |  

3.11. Vaccination policies for people using and providing Long-Term Care

COVID-19 vaccination rollout in the long-term care sector

Care home residents were prioritised for boosters, with teams going in to care homes to vaccinate residents and available staff. Thereafter staff were invited to attend other locations in the community to receive their booster vaccination.

By the 29th December 2021, Public Health Scotland estimated that 89.4% of all care home residents in Scotland had received a booster or 3rd dose and 95.1% had had at least two doses. 63.6% of staff had had the booster (or 3rd dose) and 88.6% had had two doses.

Calculating the share of care home residents who have received vaccinations is difficult as there is no complete method to identify all people who live in care homes in Scotland using routine data sources, or staff working in care homes.

Policy on mandatory vaccination for long-term care staff

The UK Government has mandated that all care home staff in England are required to be fully vaccinated. Scottish Care released a statement in June 2021 to say that this mandate had little relevance in Scotland since Public Health Scotland figures released up until 15^th June 2021 showed that a very high percentage of care home staff had already been fully vaccinated. It is not Scottish Government policy to make vaccination mandatory for care home staff.

Update for: Scotland (UK)   Last updated: March 24th, 2022   Contributors: Jenni Burton  |  David Henderson  |  David Bell  |  Elizabeth Lemmon  |  

3.12. Measures to support unpaid carers

Very few measures were initially announced to support unpaid carers. These increased over time and included specific guidance for unpaid carers, enabling those experiencing symptoms to be tested and providing guidance related to the unpaid carer role (Source: DHSC: Guidance for unpaid carers). Additionally, the government provided funding for the Carers UK helpline.

A major source of support for many working unpaid carers was the furlough scheme, which enabled them to maintain up to 80% of their income (Lorenz-Dant, 2020). During the vaccine rollout, unpaid carers were included in priority group 6 (Source: DHSC: Priority groups for coronavirus vaccination).

References:

Lorenz-Dant, K. (2020) International examples of measures to support unpaid carers during the COVID-19 pandemic. Report on LTCcovid.org 

Update for: England (UK)   Last updated: March 10th, 2022   Contributors: William Byrd  |  

3.12. Measures to support unpaid carers

The Adult social care – winter preparedness plan: 2021-22 sets out the measures that will be applied across the adult social care sector to meet the challenges over the winter 2021 – 2022. This includes an additional £400,000 into the Time to Live Fund to provide micro-grants to give unpaid carers a break. Local delivery will be supported by funding and working with partners including the Carer Centre Manager Network and Scottish Young Carer Services Alliance. Additionally, £1.4million is being provided to deliver the ScotSpirit Holiday Voucher Scheme which will help low income families, unpaid carers, and disadvantaged young people to enjoy a break over the winter (Source: gov.scot).

Update for: Scotland (UK)   Last updated: March 24th, 2022   Contributors: Jenni Burton  |  David Henderson  |  David Bell  |  Elizabeth Lemmon  |  

4.02. Reforms to the Long-term care financing system

On September 7th, 2021, the Prime Minister announced a social care reform plan to cap the costs of social care, with the aim of protecting people against catastrophic costs of care. This is to be funded through a new UK-wide 1.25 per cent Health and Social Care Levy that will be ring-fenced for health and social care, based on National Insurance contributions. This levy will be applied to all working adults, including those over state pension age. Of the £36bn that will be raised through this mechanism, £5.4bn will be for social care (spread over 3 years).

The new cap on social care has been set at £86,000 in care costs over the course of a person’s lifetime (estimates vary but it would take someone in residential care around 4 years to reach the cap and around 6 years for someone receiving home care). So far it seems that the cap will start from October 2023 and that costs up to that point will not be taken into account. The cap will only cover ‘personal care’ costs, such as dressing, washing, and eating, amongst others. Accommodation, food, and other ‘hotel costs’ that are included in care home fees and costs of other forms of social care support (such as activities to enable social participation) will not count towards the cap.

An important measure included in this reform will be an increase to the means-test, changing the ‘floor’ above which individuals are able to access any public funding for social care, which will change from £23,350 to £100,000. People with assets below £20,000 will not be asked to contribute to the costs of their care from their assets.

In summary, people with assets over £100,000 will be ‘self-funders’ until the amount they have spent on ‘eligible care costs’ reaches the cap of £86,000. People with assets between £100,000 and £20,000 will contribute to the costs of their care from their assets and income until they have either reached the cap or have less than £20,000 left in assets and savings. People with assets below £20,000 will only be asked to make contributions from their income. The financing of long-term social care for working-age adults has not been considered. An article by Curry (2021) provides an initial analysis of the changes.

An amendment to the Health and Care Bill has excluded means-tested council support payments from the new £86,000 lifetime limit on costs.

The government published its long-awaited white paper for social care reform on 1st December 2021. In it, it restated its plans to raise additional funding for social care via a health and social care levy (as previously announced on 7th September 2021) and that, beyond the three year spending cycle, there is an intention for a greater share of the revenue to be allocated to social care (at present, only £5.4bn of the total £36bn raised is set to flow to social care in England). The majority of that extra funding will go towards the new cap on costs and the more generous means test. In addition, it is intended to fund fairer fees for providers of social care, better staff training and investment in innovative care models, housing and digital and technological initiatives. On launch, the document was met with scepticism that the funding envelope would be adequate to achieve the vision that it set out (see for example: Adass press release ;  Local Government Association; The Nuffield Trust press release).

References:

Curry, N. (2021). The health and care levy—is social care fixed now? The BMJ Opinion.  Retrieved from: the BMJ Accessed on 28/03/2022

Update for: England (UK)   Last updated: March 28th, 2022   Contributors: William Byrd  |  Adelina Comas-Herrera  |  Natasha Curry  |  

4.03. Reforms to develop or improve Long-Term Care data and information systems

The primary national-level strategy for forward looking long term care data policy in England is outlined in the UK Government’s Data Saves Lives (DSL): reshaping health and social care with data (DHSC, 2021). DSL aims to bring a coherent data strategy to a large and diverse range of stakeholders across both health and care sectors, traditionally sectors with different data needs, different data practices and different levels of digital maturity. DSL was launched in June 2021 and aims to feed into primary legislation through the Health and Social Care Bill, and also influence secondary legislation. The strategy is being run by NHS England & Improvement following the merger of NHSE&I with NHS X and NHS Digital in November 2021 (Source: DHSC).

Much of the strategy is given over to building on what it perceives as  momentum gained during the pandemic in health data. Specifically the linkage, integration, interoperability of data within health systems and between health and social care systems for the purposes of informing decisions with population health data and creating efficiencies in the aggregation and use of health data by researchers.

One chapter of seven is given over to long term care, Chapter 4 Improving data for adult social care. General commitments are made to addressing the following issues: access to basic information for providers of adult social care; addressing gaps in data collected by local authorities (for instance, all those they don’t fund);  integration of health and social care data; expanding the use of care technologies. The problems are discussed at a high level and financial costings, committed budgets and delivery dates are not included and have been absent from subsequent policy announcements on social care planning and spending (O’Donovan, 2021).

A survey and consultation on the strategy ran throughout the summer of 2021 and attracted submissions from a broad set of stakeholder organisations such as health and care think tanks and data specialists such as the Information Commissioners Office, The National Data Guardian and the UK Pandemic Ethics Accelerator.

A webinar hosted by LTCcovid on 18th October 2021 brought together a panel of leading practitioners and academics from different parts of social care and across the UK. They identified seven data issues for policy makers working on digital transformation in the sector:

• Lessons about social data use during the pandemic are not agreed by everyone. For instance, data infrastructure such as the adult social care capacity tracker has had unforeseen consequences such as increased burdens on staff. These are often unacknowledged in plans for future data policy.
• The continued lack of data on people who pay for their own care or do not receive services from local authorities remains a priority issue across social care.
• Tensions between conflicting desires for private data, more data, minimal data and no data must be addressed in future policy plans if trust in public social care data is to be built.
• New tensions have arisen due to decisions that are being made with the data today that were not agreed with the providers from the start.
• At the same time, robust data infrastructures are a prior condition of wider reform across UK social care, critical for anticipatory appraisal, ongoing monitoring and evaluation of innovation in services and practices.
• Opportunities for optimism include building social care data that is designed around the wellbeing of people in communities – such data would go beyond the existing principles and values of population data in health to report on the relationships and values that matter for care.
• For this, new measures with which to assess data quality and new ways of assessing and improving data operations within councils will be needed.

References:

DHSC (2021). Data saves lives: reshaping health and social care with data.  Department of Health and Social Care Policy Paper. Retrieved from: Data saves lives Accessed on 28/03/2022

O’Donovan, C. (2021). Getting the basics right in digital social care transformations. The BMJ Opinion. 

Update for: England (UK)   Last updated: March 28th, 2022   Contributors: Cian O'Donovan  |  

4.04. Reforms to improve care coordination

The Health and Care Bill contains provisions to enable integrated health care systems to play a greater role. There are two forms of integration underpinned by the legislation: integration within the NHS and greater collaboration between the NHS and local government. Measures will also be brought forward for statutory integrated care systems (ICSs). These will be comprised of an ICS Health and Care Partnership, bringing together the NHS, local government and partners, and an ICS NHS Body. The ICS NHS body will be responsible for the day to day running of the ICS, while the ICS Health and Care Partnership will bring together systems to support integration and develop a plan to address the health, public health, and social care needs of the system (DHSC, 2021; 2022).

In parallel with the Health and Social Care Bill, the government is also developing an integration white paper, which is seeking to establish greater integration between health and social care services. The contents of the white paper are unclear at present but media reports in the trade press suggest that the proposals will seek to facilitate integration through the pooling of budgets and establishing a single line of accountability. The plans have raised concerns amongst experts. The exact date of publication is unknown, but it is expected in late 2021/early 2022 (Edwards, 2021).

The government plan for social care, Build Back Better (DHSC, 2022), contains provisions for improving the integration of health and social care. This will be shaped by three principles:

1. Outcomes focussed – The government will work with systems to identify a single set of system-based health and care outcomes that local systems (including ICSs and Local Authorities) will be asked to deliver.
2. Empowering local leaders – Local leaders will be given the freedom to align incentives and structures in order to deliver these outcomes in the way that is best for their communities.
3. Wider system reforms – There will be Care Quality Commission (CQC) oversight of commissioning of adult social care by Local Authorities, which will be introduced through the Health and Care Bill, and a role for the CQC in assessing the overall quality of ICSs.

References: 

DHSC (2021). Integration and innovation: working together to improve health and social care for all. Department of Health and Social Care Policy Paper. Retrieved from: https://www.gov.uk/government/publications. Accessed on 28/03/2022

DHSC. (2022). Build Back Better: Our Plan for Health and Social Care. Department of Health and Social Care Policy Paper. Retrieved from:https://www.gov.uk/government/publications. Accessed on 28/03/2022

Edwards, N. (2021). Pooling NHS and social care budgets needs more thought. HSJ. Retrieved from: Health Service Journal. Accessed on 28/03/2022

Update for: England (UK)   Last updated: March 28th, 2022   Contributors: William Byrd  |  Natasha Curry  |  

4.05. Reforms to address Long-Term Care workforce recruitment, training, pay and conditions

A Health and Social Care Levy was announced by the government on September 9, 2021. As part of this £36 billion investment to reform the NHS and social care, at least £500 million will be allocated for funding the care workforce across three years. It is reported that it represents a five-fold increase in public spending on the skills and training of care workers and registered managers. The government have committed to providing additional support for the continuous professional development of the workforce, including training places and certifications for care workers. The funding will also be directed to mental health wellbeing resources and to provide access to occupational health funding (DHSC, 2021a).

The government announced that this would be accompanied on November 3, 2021, with a new recruitment campaign to encourage people to apply for roles in the adult social care sector. ‘Made with Care’ will launch across broadcast and social media for five months and will highlight vacancies in the sector as well as showcasing the work care workers do. However, many organisations and sector leaders have raised concerns that the existing funding and measures in place are not sufficient to mitigate a deepening workforce crisis ahead of a difficult winter.

The government published its White Paper on social care reform on 1st December 2021 (DHSC, 2021b). In it were a suite of initiatives for strengthening the skills and training of the social care workforce. These include the establishment of a Knowledge and Skills Framework, portable care certificates, and support for mental health and wellbeing. However, it stopped short of enhancing pay and no new money beyond the previously announced (£500m over three years from the health and social care levy) and the £162.5m for the winter of 2021/22 was allocated to workforce initiatives (Source: Workforce Recruitment and Retention Fund for adult social care).

Visa Relaxation for Migrant Care Workers

In December 2021 , addressing unprecedented challenges prompted by the pandemic, the government announced a temporary relaxation of immigration rules for overseas care workers in an attempt to recruit and retain care staff. Care assistants and home and social care workers are to be added to the Shortage Occupation List (SOL) in early 2022 and will be eligible for a 12-month health and care visa; allowing migrants to fill gaps in workforces. It is proposed that these measures will be in place for at least 12 months (Sources: BBC News and gov.uk).

References:

DHSC (2021a). Health and Social Care Levy. Department of Health and Social Care Policy Paper. Retrieved from: Health and Social Care Levy. Accessed on 28/03/2022

DHSC (2021b). People at the Heart of Care: adult social care reform white paper. Department of Health and Social Care Policy Paper. Retrieved from: ASC Reform White Paper.  Accessed on 28/03/2022

Update for: England (UK)   Last updated: March 28th, 2022   Contributors: William Byrd  |  Nina Hemmings  |  Natasha Curry  |  Daisy Pharoah  |  

4.05. Reforms to address Long-Term Care workforce recruitment, training, pay and conditions

The ‘Social Care – Making a Difference’ campaign has been developed by the Northern Ireland Social Care Council (NISCC) on behalf of the Department of Health as part of its ongoing work to reform Adult Social Care. The campaign highlights that social care staff are an integral and valued part of the health and social workforce and their work is critical to the sustainable provision of social care services now and in the future. This campaign went live on May 10, 2021 and is centred on local social care workers, whose stories are told through video and photography while highlighting the diversity, impact and importance of social care and the positive difference it makes in people’s lives (Source: Adult social care recruitment campaign launched).

Update for: Northern Ireland (UK)   Last updated: March 28th, 2022

4.05. Reforms to address Long-Term Care workforce recruitment, training, pay and conditions

In April 2020, the Scottish Government announced an immediate 3.3% pay increase for all social care staff in recognition of the vital work they carried out during the pandemic.

Update for: Scotland (UK)   Last updated: March 28th, 2022   Contributors: Jenni Burton  |  David Henderson  |  David Bell  |  Elizabeth Lemmon  |  

4.07. Reforms to Long-term care regulatory and quality assurance systems

The government plans to establish an enhanced assurance framework for adult social care, working alongside the Care Quality Commission (CQC) and local authorities to improve adult social care oversight, access, and outcomes across England.

The Health and Care Bill introduces a new duty for the CQC to review and make an assessment of the delivery of adult social care duties by local authorities. Where they find a significant failure, the Secretary of State will act to secure improvement. The CQC will publish the findings of their reviews with the intentions of allowing people to see how their local authority is performing in the delivery of its adult social care duties.

On May 27, 2021, the CQC launched its new strategy outlining how it plans to change and transform to deliver more effective regulation. There are four key themes set out.

1. People & communities – The CQC wants regulation to be driven by people’s needs and experiences, placing a focus on what’s important to people and communities as they access, use, and move between services. A key outcome for this is the development of a clear definition of quality and safety that is in line with people’s changing needs and expectations.
2. Smarter regulation – The CQC wants to use smarter, more dynamic, and flexible regulation that provides up-to-date and high-quality information and ratings. In achieving this the CQC aims to move away from inspection-reliant regulation by placing more focus on data and feedback from people on their experiences of care.
3. Safety through learning – The CQC wants to regulate for stronger safety cultures across the sector, prioritising learning and improvement, and collaboration.
4. Accelerating improvement – The CQC aims to have accelerated improvements in the quality of care and encouraged and enabled safe innovation that benefits people or results in more effective and efficient services (Sources: https://www.gov.uk/government/health-and-care-bill-factsheets/health-and-care-bill-adult-social-care-assurance-and-support; https://www.ridout-law.com/cqcs-new-strategy-what-does-it-say-and-how-will-it-be-implemented/).

Update for: England (UK)   Last updated: March 28th, 2022   Contributors: William Byrd  |  

4.07. Reforms to Long-term care regulatory and quality assurance systems

The Health and Social Care (Quality and Engagement) (Wales) Act became law on June 1, 2020. The Welsh Government is working to bring the Act into force in spring 2023. The Act will strengthen the existing duty of quality on NHS bodies and extend this to the Welsh Ministers in relation to their health service functions. This places an overarching duty of quality on the Welsh Ministers and reframes and broadens the existing duty on NHS bodies. Additionally, the duty seeks to strengthen governance arrangements by requiring the Welsh Ministers and NHS bodies to report annually on the steps they have taken to comply with the duty and assess the extent of any improvement in outcomes (Source: https://gov.wales/health-and-social-care-quality-and-engagement-wales-act-summary-html).

Update for: Wales (UK)   Last updated: March 28th, 2022

4.10. Reforms to improve Infection Prevention and Control standards and infection surveillance in the Long-Term Care sector

A leading nursing charity, the Queen’s Nursing Institute, has received government funding to develop a network of infection prevention and control (IPC) champions for the adult social care sector in England. This £35,000 grant will be used to cover both care home and domiciliary care services. The Department of Health and Social Care aim is to help maintain and continuously improve IPC standards across the care sector through this programme. The network, consisting of social care nurses and other professionals responsible for IPC, will share best practice through virtual meetings, a newsletter, and discussion forum (Source: Nursing time innovations).

Update for: England (UK)   Last updated: March 28th, 2022   Contributors: William Byrd  |  

4.12. Reforms to strengthen and guarantee the rights and voice of people who use and provide care

On June 1, 2020, The Health and Social Care (Quality and Engagement) (Wales) Act became law. The Welsh Government is now working to bring the Act into force in spring 2023. This Act will strengthen the voice of citizens, by replacing Community Health Councils with a new all-Wales Citizen Voice Body that will represent the interests of people across health and social care. The aims of this new body are to:

1. Strengthen the citizen voice in Wales in matters related to both health and social services, ensuring that citizens have an effective mechanism for ensuring that their views are heard.
2. Ensure that individuals are supported with advice and assistance when making a complaint in relation to their care. se the service user experience to drive forward improvement.
3. Use the service user experience to drive forward improvement.

This new organisation will be established as a national body but it will be structured in such a way as to enable it to perform its functions at a national, regional and local level (Source: https://gov.wales/health-and-social-care-quality-and-engagement-wales-act-summary-html).

Update for: Wales (UK)   Last updated: March 28th, 2022