Disabled people and COVID-19 in the UK
Lead Research Organisation:
London School of Hygiene & Tropical Medicine
Department Name: Infectious and Tropical Diseases
Abstract
In the UK there are over 11 million people with disabilities, including 45% of people over State Pension Age (1). This is nearly 20% of the population. Disabled people may be particularly vulnerable in the current COVID-19 pandemic. They may have high risk of severe morbidity or mortality following COVID-19 infection and many will have entered isolation before the rest of the population and they may be advised to continue for longer. Many disabled people have compromised respiration or risk factors for COVID-related mortality, such as cardiac disease, hypertension or diabetes (2). Social care settings are at increased risk of Coronavirus transmission. The increased pressure on the health system may leave disabled people struggling for attention. As disabled people have a narrower margin of health (3) this is a cause for concern. Disabled people may be de-prioritised if critical care is limited, such as ventilators, which violates their rights, and may fear triage and DNAR decisions taken without their involvement.
Disabled people who rely on social care may find their needs neglected. The UK Coronavirus Bill explicitly suspends Care Act legislation which puts a responsibility on Local Authorities to meet care needs of people with disabilities (4) Care and support workers may be unable to coinitnue in their role due to illness or bereavement. It is impossible to self-isolate where you rely on careworkers to meet your daily care needs. Many disabled people live in poverty, struggle to get enough food, and might be food-insecure (5). Finally, disabled people are at increased risk of isolation and mental health conditions such as depression and anxiety, which could be exacerbated and could cause confusion & distress in people with cognitive impairment. COVID-19 will have immediate impacts, as well as medium and longer term.
There is an urgent need to hear the voices of disabled people, and their families, in the COVID-19 outbreak. We will ask how disabled people in England and Scotland are experiencing the epidemic and response measures such as isolation, social distancing and quarantine, including what they consider might help them. We aim to conduct 60 interviews in England and Scotland, with older people with disabilities and disabled people under 70, with the range of impairments (physical, mental, sensory, intellectual), with parents of disabled children. Interviews will cover health, mental health, independent living/social care, everyday life, and suggestions for solutions to barriers experienced. This is a qualitative study, aiming to get 60 in-depth telephone interviews with a range of disabled people and parents of disabled children, with different experiences, in urban and rural areas in England and Scotland. People will be recruited via disabled people's organisations, social care organisations, parent support groups and other voluntary bodies. Researchers will adopt a quota sampling approach to select individuals in each category, until 60 interviews will have been gathered. Interviews will cover impairment-specific health and rehabilitation, general health, social care, everyday life, mental health and isolation, and suggestions for solutions to barriers experienced. All interviews will be transcribed and we will conduct thematic analysis. Findings will be disseminated via disability research and public health research journals, and through broadcast and print media to the public.
Disabled people who rely on social care may find their needs neglected. The UK Coronavirus Bill explicitly suspends Care Act legislation which puts a responsibility on Local Authorities to meet care needs of people with disabilities (4) Care and support workers may be unable to coinitnue in their role due to illness or bereavement. It is impossible to self-isolate where you rely on careworkers to meet your daily care needs. Many disabled people live in poverty, struggle to get enough food, and might be food-insecure (5). Finally, disabled people are at increased risk of isolation and mental health conditions such as depression and anxiety, which could be exacerbated and could cause confusion & distress in people with cognitive impairment. COVID-19 will have immediate impacts, as well as medium and longer term.
There is an urgent need to hear the voices of disabled people, and their families, in the COVID-19 outbreak. We will ask how disabled people in England and Scotland are experiencing the epidemic and response measures such as isolation, social distancing and quarantine, including what they consider might help them. We aim to conduct 60 interviews in England and Scotland, with older people with disabilities and disabled people under 70, with the range of impairments (physical, mental, sensory, intellectual), with parents of disabled children. Interviews will cover health, mental health, independent living/social care, everyday life, and suggestions for solutions to barriers experienced. This is a qualitative study, aiming to get 60 in-depth telephone interviews with a range of disabled people and parents of disabled children, with different experiences, in urban and rural areas in England and Scotland. People will be recruited via disabled people's organisations, social care organisations, parent support groups and other voluntary bodies. Researchers will adopt a quota sampling approach to select individuals in each category, until 60 interviews will have been gathered. Interviews will cover impairment-specific health and rehabilitation, general health, social care, everyday life, mental health and isolation, and suggestions for solutions to barriers experienced. All interviews will be transcribed and we will conduct thematic analysis. Findings will be disseminated via disability research and public health research journals, and through broadcast and print media to the public.
Publications
Cullingworth J
(2023)
"They have been a saving grace in all this": the role of the third sector in disabled people's experiences of COVID-19 and implications for sector-state relations
in Voluntary Sector Review
Kuper, K.
(2020)
Disability-inclusive COVID-19 response: what it is, why it is important, and what we can learn from the United Kingdom's response
in Wellcome Open
Pearson C
(2022)
Covid-19 and the Crisis in Social Care: Exploring the Experiences of Disabled People in the Pandemic
in Social Policy and Society
Scherer N
(2022)
'Do they ever think about people like us?': The experiences of people with learning disabilities in England and Scotland during the COVID-19 pandemic
in Critical Social Policy
Shakespeare T
(2021)
Disabled people in Britain and the impact of the COVID -19 pandemic
in Social Policy & Administration
Shakespeare T
(2021)
Triple jeopardy: disabled people and the COVID-19 pandemic.
in Lancet (London, England)
Shakespeare, T.
(2021)
Disabled People in Britain and the Impact of the COVID-19 Pandemic
in Preprints.Org
| Description | Every day life has been disrupted. People described how their health care and support had changed significantly. Routine rehabilitation was cancelled. Attempts to replicate these therapies either via video conference or phone were not perceived to be particularly successful. Many routine annual check-ups were cancelled. Provision and servicing of assistive products and aids to daily living was severely affected. All this may lead to lack of functioning and increased dependency, with potential negative impacts on caregivers. People were fearful about the virus. They were anxious about going out. Many found it impossible to practise proper social distancing. People who were deafened or hard of hearing talked abut the problems facemasks caused. Disabled adults and children appear to have been an afterthought in the response to COVID-19. Personal Protective Equipment (PPE) was provided for hospitals, but not for care homes, and then in care homes, but not for homecarers and personal assistants. Some disabled people's organisations had to source PPE for their members. Social care has failed to respond effectively. Our research participants described how the pandemic led to increased reliance on informal carers. First was the closure, or suspension of day centres, day services and large sections of the social care system, large numbers of social care contracts were cancelled, put on hold, or severely limited. Second, some of our participants were anxious about having too many people coming into their own homes and wanted to reduce contact. As a result, where it was possible, they preferred using family members who were already part of 'their social bubble'. Social services appear to have been largely absent in some authorities where we conducted interviews. Many families are struggling, both financially and emotionally. And for many, it has caused deep stress, when juggling caregiving and working from home, and for parents of young children, schooling also thrown in the mix. There is increased anxiety and loss of confidence. For people with existing mental health issues the pandemic has made things worse and there has been limited access to specialised services. For many, boredom was one of the key features of the lockdown period. These issues would have been much worse but for the role played by the third sector: many organisations completely changed the way they work, filling in the gaps left by social care and helping people's mental health and wellbeing. Zoom and other digital technologies have become very important. The pandemic has meant health, education, employment, retail, entertainment - have been largely and sometimes exclusively accessed via the internet. This has benefitted many disabled people, because it has removed access barriers, as long as they have internet access. Online access can do many things. But it cannot replace human touch and connection, which is central to the work of primary care doctors and health workers, rehabilitation therapists, and social care workers, and teachers. Participants felt there had been failures of communication and leadership, Clear communication in a health emergency is indispensable (Goggin and Ellis, 2020). But there has been frustration and communication was badly handled. Many people were also unsure about how to protect themselves. Voluntary organisations and schools have received conflicting information. Community groups have played a key role in getting the right information across. Government daily briefings were not sufficient to help people with learning difficulties in particular to understand what they should do. |
| Exploitation Route | Short term The needs of disabled people have to be fully considered in COVID responses. Assessments need to consider the implications of decisions on different impairment groups and those with combined impairments. Decisions should be communicated in accessible formats. Local authorities should make it clear that social care packages will be fully reinstated and resources will be invested to address the backlog in social care assessments. Social care is central to enabling disabled people to live independently in society. The reestablishment of social supports and services, including day centres and other activities, is urgently needed. COVID-19-safe alternatives need to be developed and health and social care funders and providers must work with disabled people and their organisations to develop new ways of delivering support. Measures need to be taken to ensure that disabled children receive support to 'catch up' on the educational provision that they were excluded from during the pandemic. Health and rehabilitation services need to urgently address the physical health needs of disabled people. The third sector need to be supported, to ensure it can continue to provide help to disabled people and their families. Three ways to achieve this are: to work with the sector as equal partners rather than contractors; to reduce unnecessary reporting and administration; and to provide fair and longer-term funding. Medium to long term The social care system has been broken for some time; its vulnerability has been exposed by the pandemic. An overhaul of the system is required that places the individual and their care at the centre. In order to achieve good quality social care provision, secure funding is required. Policymakers and social care providers must work collaboratively with disabled people and their organisations to address their needs during the rest of this pandemic and after and in anticipation of comparable future crises. |
| Sectors | Communities and Social Services/Policy,Education,Healthcare,Retail |
| Description | We believe our findings have contriibuted to greater understanding of additional vulnerabilities experienced by disabled people. We know that MPs, Noble Lords and Ladies, civil servants and other policy-makers are aware of our findings. We have contributed our research to BBC and other broadcasters and journalists. We will contribute our findings to the UK national enquiry on Covid-19 resppnse when it opens. We therefore believe our research will improve responses to disabled people in health emergencies. |
| Sector | Healthcare,Government, Democracy and Justice |
| Impact Types | Societal,Policy & public services |
| Description | Covid-19 Learning and Evaluation Oversight Group. |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| URL | https://www.gov.scot/groups/coronavirus-covid-19-learning-and-evaluation-oversight-group/ |
| Description | Evidence submitted to the Heath Foundation's review of the impact of Covid |
| Geographic Reach | National |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| Impact | 1000 description of early findings from our research. |
| URL | https://www.health.org.uk/news-and-comment/charts-and-infographics/what-does-the-pandemic-mean-for-h... |
| Description | Flourish Glasgow |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Impact | As part of this partner ship we have been able to share our findings and contribute to a range of common city initiatives including the Social Recovery Task Force, Primary Care Mental Health development, the International Thrive Network, Socially Connected Glasgow Strategy, Glasgow Community Action Plan (http://glasgowcap.org.uk) |
| Description | Report submitted to Equality and Human Rights Committee Scottish Parliament |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Impact | Short report of our research findings and their implications for equality and human rights. |
| Description | What do evaluations of COVID interventions tell us about their impact on disabled people |
| Geographic Reach | National |
| Policy Influence Type | Contribution to a national consultation/review |
| Description | BBC Radio 4 PM Programme interview |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | Interview of Tom Shakespeare by presenter Evan Davies discussing evidence of disabled people's triple Covid-19 jeopardy on February 11th 2021 |
| Year(s) Of Engagement Activity | 2021 |
| Description | BBC TV News interview with Nikki Fox |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | Tom Shakespeare was interviewed by BBC TV News presenter Nikki Fox on Wednesday 10th February 2021, addressing disparities in Covid-19 outcomes, based on UKRI-funded research and on other evidence of disproportionate risk of people with learning disabilities. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Glasgow City Council COVID Recovery Group |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Presentation to Glasgow City Council Covid recovery group to discuss implications of pandemic for disabled people. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Innovating in the third sector - online research and services in 2020 conference: Research with disabled people in a time of COVID. This event was hosted by Policy Scotland the The Third Sector Research Forum. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | The presentation was to a conference bringing together researchers and practitioners interested in third sector research. The focus was on innovating in the third sector; our panel included presenters talking about research and services provided online. The presentations resulted in a rich discussion about the benefits and drawbacks of online research and service provision and always considered implications for the future. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://policyscotland.gla.ac.uk/innovating-in-the-third-sector-online-research/ |
| Description | Launch for people with learning disabilities |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | We offered a bespoke session for people with learning disabilities, and used a member of the team who had experience of communicating with this population. Simplified findings of the study were presented, with an opportunity for asking questions. This was an opportunity for participants in the study, together with groups such as People First, to hear the results. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Launch of findings |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Team from Glasgow University and LSHTM presented the findings of the study; we invited Glasgow Disability Alliance, Inclusion Scotland, Greater Manchester Coalition of Disabled People and Inclusion London, all of whom had produced reports of members' experiences to present alongside us. It was a well attended online event which lasted two hours. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Oral presentation at the IASSIDD Europe Congress 2021 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | I provided an oral presentation at the International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) Europe Congress 2021, entitled "The experiences of people with intellectual disabilities in England and Scotland during COVID-19". This presentation was available to numerous congress attendees across Europe, informing attendees on the situation for people with intellectual/learning disabilities in England and Scotland. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presentation to Senior Management Team, Turning Point |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | Gave a 45 minute presentation about disability and Covid-19, drawing on our submitted paper on "Disabled People in Britain and the COVID-19 pandemic". Discussion followed, session lasted 120 minutes total. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Radical Policy Rethinking after COVID-19: part of ESRC Festival of Social Science |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Policymakers/politicians |
| Results and Impact | This webinar aims discussed the academic evidence and arguments for and against radical policy changes that might solve problems arising from the COVID-19 crisis in three areas of policy: welfare, transport and urban economies. |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://policyscotland.gla.ac.uk/event/radical-policy-rethinking-after-covid-19-part-of-esrcs-festiv... |
| Description | Researching disability |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Postgraduate students |
| Results and Impact | A presentation to academics in India working on disability. The audience included full time academics, research fellows and postgraduate students. The talk presented data on the experiences of disabled people in the UK during Covid and commented on the research findings and the research methods we employed. |
| Year(s) Of Engagement Activity | 2021 |
| Description | The impact of COVID on people with Intellectual Disabilities. |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | The COVID-19 pandemic has had a catastrophic impact on the 1.5 million people with learning disabilities in the UK. Not only were they more likely than the general population to contract COVID-19, and to experience poorer health outcomes and mortality but their services and support networks were greatly disrupted. Drawing on research that has examined the experiences of people with a learning, their families and and combining this with the perspective of those who work with people with a learning disability this workshop considered the commonality of issues raised by different streams of research looking at the impact of the pandemic on their mental health and wellbeing, their physical health, the way the response to the pandemic increased their vulnerabilities the role of service providers. This workshop: Compared the rhetoric of policy with what the evidence shows about lives lived Highlighted the disconnect between health and social care provision for this population of service users Summarised the lessons learned, showing the cracks in the system Identified gains such as the benefits of distance working/learning etc which could have positive impact Ensured that the issues highlighted by the recent research remains at the forefront to the policy agenda, identify how to influence policy for this population and regain the ground lost as the result of the pandemic. Contributors/Speakers: Eddie McConnell, Down Syndrome Scotland Nathaniel Scherer, London School of Hygiene and Tropical Medicine Deborah Kinnear, University of Glasgow Angela Henderson, Scottish Learning Disability Observatory Chair Nick Watson, University of Glasgow |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://theippo.co.uk/impact-pandemic-lives-mental-health-people-intellectual-disabilities-policy-fu... |