Chris Hatton (Manchester Metropolitan University), Richard Hastings (University of Warwick) and the Project Team

This project is designed to track the experiences of adults with learning disabilities through the COVID-19 pandemic over time across the four UK nations. There will be three waves of data collection over a 12-month period. Wave 1 data were collected between December 2020 and February 2021.

There are two cohorts of participants in this project.

• In Cohort 1, 621 adults with learning disabilities were interviewed by researchers
• In Cohort 2, 378 family carers or paid support staff took part in an online survey about the experiences of the adult with learning disabilities who they supported/cared for. These were likely to be adults with more severe to profound learning disabilities. In Cohort 2, 166 of the adults were described as having profound and multiple learning disabilities (PMLD)

This document presents the highlights from the full report of the Wave 1 results, published in March 2021. The full report can be found here, the highlights of the report can be found here, and the Easy Read highlights can be found here. The findings cover a wide range of issues relating to people’s circumstances and experiences of the COVID-19 pandemic – this blog highlights a selection of the findings potentially relevant to social care.

COVID-19

• 3% of people with learning disabilities in Cohort 1 and 7% of people with learning disabilities in Cohort 2 had received a positive COVID-19 test since March 2020.
• A further 5% of people with learning disabilities in Cohort 1 and 3% of people with learning disabilities in Cohort 2 thought (or their carers thought, in Cohort 2) that they had had COVID-19, but this had not been confirmed by a COVID-19 test.
• 31% (Cohort 1) and 58% (Cohort 2) of people with learning disabilities had shielded at some point since March 2020. In Cohort 2, 30% of those shielding were not formally told to shield, but still felt that they needed to.
• People with learning disabilities in Cohort 1 most commonly found out about changes to COVID-19 rules/information by watching the television (76%), or talking to friends and family (43%) or support workers (35%). Only 12% of people used government websites for this purpose.
• The vast majority of participants in both cohorts (>80%) indicated that they, or the person they supported/cared for, would take the COVID-19 vaccine if it were offered to them.

Worries about COVID-19

• More people with learning disabilities in Cohort 1 were concerned about their family or friends catching COVID-19 (80%) than were worried about catching it themselves (66%).
• 50% of people with learning disabilities in Cohort 1 were at least a little worried to leave the house.
• People with learning disabilities in Cohort 1 were generally happy or accepting about their family or carers wearing PPE, acknowledging that it was necessary to keep everyone safe.

Health and social care support and employment

• Of those who regularly used these services before the first lockdown, 99% of participants in Cohort 1 reported community activities had stopped completely or reduced by the time of the interviews, and 89% reported their day service had stopped completely or reduced.
• Carers of people with learning disabilities in Cohort 2 regularly using these services before the first lockdown reported that 95% of people with learning disabilities had experienced short breaks/respite stopping or reducing, whilst 98% reported day services stopping or reducing.
• Of those who regularly had support in their home from support workers before the first lockdown, 24% of people in Cohort 1 and 48% of people in Cohort 2 reported that this support had stopped altogether or reduced.
• Over 60% of people with learning disabilities in Cohorts 1 and 2 who had routinely seen healthcare professionals such as GPs or therapists before the first lockdown in March 2020 had seen them less or not at all since then.
• As many as 23% of people with learning disabilities in Cohort 1 and as many as 41% of people with learning disabilities in Cohort 2 had a medical test or a hospital appointment cancelled since the first lockdown in March 2020.
• Of the 32% of people with learning disabilities in Cohort 1 who had some form of paid job before the March 2020 lockdown, 88% were still in employment (still working, furloughed, or with their job held for them).
• Of the 50% of people with learning disabilities in Cohort 1 who did volunteer work before the March 2020 lockdown, 81% had kept their volunteer role during this wave of the project, even if they were not currently volunteering.

Wellbeing

• In Cohort 1, over 65% of people with learning disabilities had felt angry or frustrated, sad or down, and worried or anxious at least some of the time in the four weeks before their interview.
• Over 60% of participants in Cohort 2 reported that the person they support/care for had worse well-being since the start of the first lockdown in March 2020
• Carers in the Cohort 2 survey reported that their health had been affected by their caring role in the last 4 weeks, most commonly disturbed sleep (57%), feeling tired (64%) and feeling stressed (65%).

Friends and family

• 72% of people with learning disabilities in Cohort 1 reported that they were staying in touch with important people in their lives as much as they wanted.
• 92% of people with learning disabilities in Cohort 1 used the internet at home.
• compared to people without PMLD (63%).
• In both cohorts, participants were most commonly getting help with food shopping (40% Cohort 1, 56% Cohort 2) and getting medicines (25% Cohort 1, 53% Cohort 2)  from their family members
• Only 1% of people with learning disabilities in both cohorts were finding it difficult to access food or medicines.
• 12% of people with learning disabilities in Cohort 1 were caring for someone they were living with.

What happens next?

Following extensive work by and with collaborating organisations across the UK, the Wave 2 interviews and surveys will be starting in early April 2021 for people who took part in the Wave 1 interviews and surveys. More details will be available on our project website and through social media:

Twitter @CoronavirusLD

Instagram coronavirusLD

This research was funded by UK Research and Innovation (Medical Research Council), and supported by the Department for Health and Social Care (National Institute for Health Research) as part of the UKRI-DHSC COVID-19 Rapid Response Rolling Call.

This post contains the results from independent research funded by the Department for Health and Social Care (DHSC) (National Institute for Health Research; NIHR) and UK Research and Innovation (UKRI) (Medical Research Council; MRC). The views expressed in this document are those of the author(s) and not necessarily those of DHSC, NIHR, UKRI or MRC.