Coronavirus and people with learning disabilities study: Wave 4 Results: February 2023 (Full Report)

There are approximately 1.5 million people with learning (intellectual) disabilities across the UK. Throughout the COVID-19 pandemic, data indicated that people with learning disabilities were more likely to contract COVID-19, have a more severe case of COVID-19, and were at least three times more likely than people without learning disabilities to die from COVID-19. People with learning disabilities are a very diverse group; while some people need 24-hour support others have limited or no social care support. Inequalities in health, wellbeing, social isolation, employment and poverty that existed before COVID-19, along with separation from family and friends and changes to routines, may have been exacerbated during the COVID-19 pandemic. User-led organisations, families and social care support providers reported and continue to report multiple challenges associated with social restrictions, maintaining infection control, and the provision of social care support to people and families. There have also been geographical variations in social and health care services’ responses to COVID-19; in terms of both how and whether people receive support. We have written about these issues in earlier reports from the project. Large-scale COVID-19 surveys, with their general population remit, used methods (e.g., online surveys) likely to exclude most people with learning disabilities. Even when these surveys were nationally representative, they did not include sufficient numbers of people with learning disabilities to allow for meaningful analysis across different parts of the UK. They also did not have the flexibility to ask questions of specific relevance to people with learning disabilities. These larger surveys were typically being carried out without the specific resources and expertise that would enable the direct interview methods, with adapted questions and trained interviewers, needed for people with learning disabilities to participate. The project reported here uses these direct interview methods and was designed to systematically and responsively track the experiences of adults with learning disabilities through the COVID-19 pandemic over time across the UK, and investigate swiftly actionable factors associated with better outcomes. For Wave 4 of the project, the research team continued to examine the ongoing impact of the pandemic on the lives of people with learning disabilities in the UK. However, by Wave 4 of the project (the focus in this report), the study also began to look more broadly at the current living circumstances of people with learning disabilities in the UK in the context of a pathway into recession and challenges for public services

Health and healthcare of people with learning disabilities in the United Kingdom through the COVID-19 pandemic

Background During the COVID-19 pandemic in the United Kingdom, many health services were withdrawn from people with learning disabilities, with negative impacts on people's health. What has happened to people's health and healthcare as we move beyond the pandemic? Methods Access to health services and health status were tracked for 550 UK adults with learning disabilities, using structured online interviews with people with learning disabilities and online surveys with family members or paid carers. Information was provided four times, from Wave 1 (in the winter 2020/2021 ‘lockdown’) to Wave 4 (autumn 2022, over a year after public health protections stopped). Findings By Wave 4, most people with learning disabilities had had COVID-19, although high vaccination rates limited the number of people hospitalised. There was little evidence that use of GP services, community nurses, other therapists or annual health checks had increased over time, and at Wave 4 more people were having difficulty getting their medicines. People's health did not substantially improve over time. People with profound and multiple learning disabilities had poorer health and were less likely to be accessing health services. Conclusions Improvements in access to health services for people with learning disabilities after the pandemic have not yet happened

Health and healthcare of people with learning disabilities in the United Kingdom through the COVID‐19 pandemic

Background: During the COVID‐19 pandemic in the United Kingdom, many health services were withdrawn from people with learning disabilities, with negative impacts on people's health. What has happened to people's health and healthcare as we move beyond the pandemic? Methods: Access to health services and health status were tracked for 550 UK adults with learning disabilities, using structured online interviews with people with learning disabilities and online surveys with family members or paid carers. Information was provided four times, from Wave 1 (in the winter 2020/2021 ‘lockdown’) to Wave 4 (autumn 2022, over a year after public health protections stopped). Findings: By Wave 4, most people with learning disabilities had had COVID‐19, although high vaccination rates limited the number of people hospitalised. There was little evidence that use of GP services, community nurses, other therapists or annual health checks had increased over time, and at Wave 4 more people were having difficulty getting their medicines. People's health did not substantially improve over time. People with profound and multiple learning disabilities had poorer health and were less likely to be accessing health services. Conclusions: Improvements in access to health services for people with learning disabilities after the pandemic have not yet happened