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

The Coronavirus and Learning Disability Study has been tracking the experiences of adults with learning disabilities through the COVID-19 pandemic over time across the four UK nations. Wave 1 data were collected between December 2020 and February 2021, mostly at a time of UK-wide lockdown and before COVID-19 vaccines were prioritised for all adults with learning disabilities (see here for Wave 1 findings). Wave 2 data were collected between April and May 2021, when restrictions were being eased and COVID-19 vaccination was up and running for adults with learning disabilities (see here for Wave 2 findings). Here we report on findings from the third and final wave of the project, where we collected data from people in July and August 2021 when most restrictions were removed.

There are two cohorts of participants in this project.

• In Cohort 1, adults with learning disabilities were interviewed by researchers. In Wave 3, 489 adults were interviewed (a 79% retention rate for those who took part in Wave 1).
• In Cohort 2, 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 Wave 2, 280 family members and support workers completed surveys (a 74% retention rate for those who took part in Wave 1). In Cohort 2 during Wave 3, 118 of the 280 adults were described as having profound and multiple learning disabilities (PMLD).

The findings cover a wide range of issues relating to people’s circumstances and experiences of the COVID-19 pandemic. This blog presents a selection of the findings from Wave 3 of the project, published as a main report and six easier to read briefings identified as priorities by the project’s advisory groups (these can be found here). 

The lives of adults with learning disabilities and their carers are still a long way from returning to normal despite COVID-19 restrictions lifting. Over half of adults with learning disabilities remain worried to leave the house and more than one in five with profound and multiple learning disabilities are still shielding. Many people are still living restricted lives despite overwhelmingly doing their bit to help control the pandemic. Most adults with learning disabilities are still wearing masks in public, more than nine out of 10 have had both doses of the COVID-19 vaccine, and the same again are willing to receive a booster vaccine.

The level of support received has also not returned to pre-pandemic levels. One in five adults with learning disabilities say they are getting less support now than before, with almost half of carers reporting the same thing. Many are now paying for some services out of their own pocket. 

The pandemic is having a prolonged impact on carers too, with a majority of family carers and support staff reporting disturbed sleep, high stress, and tiredness as a result of their caring responsibilities. Many are unsure when the life of the person they care for will return to what it was. 

Key research findings  

Vaccinations:

• Over 92% of people with learning disabilities in the study have had both doses of the COVID-19 vaccine
• More than 87% of people with learning disabilities in the study are likely to take a booster COVID-19 vaccine if it was offered
• At least two thirds of people in in the study think that paid support staff and personal assistants should have to have a COVID-19 vaccine 

Restrictions:

• 76% of people in Cohort 1 and 88% of Cohort 2 believe that there should still be restrictions in place
• 19% of people with learning disabilities in Cohort 2 were currently shielding, including 22% of people with profound and multiple learning disabilities
• Over 20% of people with learning disabilities (and/or the person who supports them) do not feel safe to return to places they used to go before the pandemic 

Service support:

• One in five people in Cohort 1 say that they are receiving less support from services now than before the pandemic. For survey participants in Cohort 2, this rises to almost half (48%).
• About a third of people who have personal budgets report they are paying for services that they are not currently getting
• More than a quarter of study participants report that their services and supports have become more expensive, while more than a third report paying for some services out of their own pocket

Mental and physical health:

• Almost one in five people in Cohort 1 (19%) and over a quarter of people in Cohort 2 (28%) had new or worsening health problems in the last four weeks
• Over half of people in Cohort 1 (52%) are at least a bit worried to leave the house
• One in five people in Cohort 1 (21%) and a quarter of people in Cohort 2 (25%) are worried or anxious often or always
• Less than one in ten people in both cohorts are getting help from a mental health professional for their mental health

What happens next?

This is the final wave of the Coronavirus and People with Learning Disabilities project, although we will be spending the next few months with partner organisations and others within each country to digest the project’s findings and use the findings to inform action. More details are available on our project website and through social media:

Twitter: @CoronavirusLD

Instagram: coronavirusLD

Easy Read briefings:

Project teams and acknowledgements:

*Sue Caton (Manchester Metropolitan University); Samantha Flynn, Nikita Hayden and Andreas Paris (University of Warwick); Anna Marriott (NDTi); Andrew Jahoda, Amanda Gillooly and Roseann Maguire (University of Glasgow); Laurence Taggart and Peter Mulhall (University of Ulster); Stuart Todd and Edward Oloidi (University of South Wales); Jill Bradshaw and Nick Gore (University of Kent); Stephen Beyer (Cardiff University); Katrina Scior (UCL); David Abbott and Pauline Heslop (University of Bristol)

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 document 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.