The impact of the COVID-19 pandemic on people with learning disabilities and factors associated with better outcomes
Lead Research Organisation:
University of Warwick
Department Name: CEDAR
Abstract
There are about 1.5 million people with learning disabilities across the UK. Even before the COVID-19 pandemic, people with learning disabilities were more likely to experience poorer health and wellbeing, restricted social lives and loneliness and poverty. The social retsrictions and changes in support during the COVID-19 pandemic may have made this worse. In this project we will ask 1,000 people with mild/moderate learning disabilities, and the carers of 500 people with severe/profound learning disabilities, about their wellbeing, health, living circumstances, the support they are getting, and the impact of COVID-19 on their lives. We will go back to people three times over the 12-month project so we can see if anything is changing over time and what is linked to better experiences for people. We will also ask extra questions about urgent issues that come up during the course of the project. These will be decided by working with collaborating organisations of people with learning disabilities and family carers, policy-makers and other organisations across the UK. We will analyse the information each time we run the survey so we, with collaborating organisations, can get information quickly to the wide range of people and organisations who can use it.
Technical Summary
There are 1.5 million people with learning disabilities in the UK. Existing health, wellbeing, economic and support inequalities are likely to have been exacerbated by the COVID-19 pandemic.
This project has three research questions:
1. What are the wellbeing, health and social effects of the COVID-19 pandemic, including social restrictions and changes to how people are supported, on the lives of adults with learning disabilities across the UK over time?
2. What actionable factors are associated with better outcomes for: a) people with mild/moderate learning disabilities; b) people with severe/profound learning disabilities?
3. What urgent issues concerning people with learning disabilities are emerging over time?
Longitudinal data will be collected 3 times in the 12-month project from two purposively sampled cohorts across the UK: 1,000 adults with mild/moderate learning disabilities (interviewed directly via telephone etc by research interviewers); and 500 adults with severe/profound learning disabilities (via online survey with carers). Core data will include wellbeing, health (including COVID-19), the impact of COVID-19 on wellbeing, lifestyle and finances, living circumstances, and changes in support received. Additional questions at any wave will be determined by the process outlined below.
These surveys will take place within three repeated cycles:
Step 1: Collaborating organisations and policy-makers across the UK bring forward urgent issues, and select with researchers additional questions for the next survey wave
Step 2: Surveys are conducted
Step 3: Survey results are rapidly analysed, shared with policy-makers, and disseminated in multiple (including accessible) formats.
This project has three research questions:
1. What are the wellbeing, health and social effects of the COVID-19 pandemic, including social restrictions and changes to how people are supported, on the lives of adults with learning disabilities across the UK over time?
2. What actionable factors are associated with better outcomes for: a) people with mild/moderate learning disabilities; b) people with severe/profound learning disabilities?
3. What urgent issues concerning people with learning disabilities are emerging over time?
Longitudinal data will be collected 3 times in the 12-month project from two purposively sampled cohorts across the UK: 1,000 adults with mild/moderate learning disabilities (interviewed directly via telephone etc by research interviewers); and 500 adults with severe/profound learning disabilities (via online survey with carers). Core data will include wellbeing, health (including COVID-19), the impact of COVID-19 on wellbeing, lifestyle and finances, living circumstances, and changes in support received. Additional questions at any wave will be determined by the process outlined below.
These surveys will take place within three repeated cycles:
Step 1: Collaborating organisations and policy-makers across the UK bring forward urgent issues, and select with researchers additional questions for the next survey wave
Step 2: Surveys are conducted
Step 3: Survey results are rapidly analysed, shared with policy-makers, and disseminated in multiple (including accessible) formats.
Publications
Caton S
(2022)
Online social connections and Internet use among people with intellectual disabilities in the United Kingdom during the COVID-19 pandemic
in New Media & Society
Caton S
(2022)
Digital participation of people with profound and multiple learning disabilities during the Covid-19 pandemic in the UK
in British Journal of Learning Disabilities
Flynn S
(2021)
The experiences of adults with learning disabilities in the UK during the COVID-19 pandemic: qualitative results from Wave 1 of the Coronavirus and people with learning disabilities study
in Tizard Learning Disability Review
Flynn S
(2021)
Health and social care access for adults with learning disabilities across the UK during the COVID-19 pandemic in 2020
in Tizard Learning Disability Review
Flynn, S.
(2022)
Access to and use of health and social care services for people with learning disabilities during COVID-19: a longitudinal study
in Tizard Learning Disability Review
Hatton C
(2021)
The willingness of UK adults with intellectual disabilities to take COVID-19 vaccines.
in Journal of intellectual disability research : JIDR
| Description | Written evidence to Commons Health and Social Care Select Committee |
| Geographic Reach | National |
| Policy Influence Type | Contribution to a national consultation/review |
| URL | https://committees.parliament.uk/writtenevidence/16724/pdf/ |
| Title | The Impact of the Covid-19 Pandemic on People with Learning Disabilities and Factors Associated with Better Outcomes, 2020-2021. [data collection]. |
| Description | These data are safeguarded. Interviews Cohort 1 at 3 separate intervals between December 2020 and December 2021 (Wave 1, 2 and 3) via remote communication channel (e.g. telephone, WhatsApp, Zoom, Microsoft Teams). Interviewers coded responses from the interview directly into Qualtrics survey. Online surveys with Cohort 2 at 3 separate intervals between December 2020 and December 2021 (Wave 1,2 and 3). Cohort 1 participating sample - adults aged 16+ (18+ in Northern Ireland) with mild/moderate learning disabilities. Cohort 2 participating sample - family members or care workers and/or paid support staff of adults (16+) with severe/profound learning disabilities. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | As a research team, we have used this dataset to prepare analyses for multiple engagement activities and publications. These are detailed in other records for this award. |
| URL | https://beta.ukdataservice.ac.uk/datacatalogue/studies/study?id=855306 |
| Description | 2 researchers from the study group presented some details about the study and some key health related findings to senior professionals. This groups meets regularly to discuss policy, practice and education in relation to learning disability nursing. The presentation was followed by a discussion and an invitation to return to the group with later findings. Members of the network were told where to find regularly updated findings from the study |
| 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 | 2 researchers from the study group presented some details about the study and some key health related findings to senior professionals. This groups meets regularly to discuss policy, practice and education in relation to learning disability nursing. The presentation was followed by a discussion and an invitation to return to the group with later findings. Members of the network were told where to find regularly updated findings from the study. |
| Year(s) Of Engagement Activity | 2021 |
| Description | A press release in Northern Ireland |
| 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 | This event allowed the N Ireland PI to present some of the main results of the study. |
| Year(s) Of Engagement Activity | 2021 |
| Description | A recording of the formal regional event in Northern Ireland |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | The regional formal event that was held on Friday 3rd Dec 10am-noon was recorded and hosted on Ulster University's website (https://www.ulster.ac.uk/research/topic/nursing-and-health/caring-for-people-with-complex-needs/research-themes/neurodevelopmental/reports). This event allowed the research team and local learning disability partners to present the results of the study, and highlight specific policy and practice issues that need addressed (please see the Research & Policy Brief for a full list of these issues raised from the research and engagement with stakeholder events). The 7 ASKS further framed these key policy and practice issues from the research and events sparking heated discussion from all the participants. |
| Year(s) Of Engagement Activity | 2021 |
| Description | A report in The Irish News about the formal regional event in Northern Ireland |
| 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 | Public/other audiences |
| Results and Impact | This activity allowed the N Ireland PI to present some of the main results of the study. |
| Year(s) Of Engagement Activity | 2021 |
| Description | APPG on Learning Disability Meeting presentation |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Gary Bourlet from Learning Disability England presented at the on line APPG meeting 9th June 2021. The meeting theme was 'How Covid 19 has affected people with learning disabilities'. Gary did a 10 minute presentation about the positive and negative impacts Learning Disability England has heard from members and included some data from the research project initial findings. Learning Disability England are one of the project's VCSE Partners. Attendees included people with learning disabilities, family members, VCSE reps and Members of Parliament. It was chaired by Mark Harper MP and secretariat provided by Mencap. The APPG meeting including 4 presentations with Q&A or debate in real time or the Team chat was intended to inform parliamentarians and their teams of the issues to be considered in the Covid inquiry |
| Year(s) Of Engagement Activity | 2021 |
| Description | Belfast radio station (Q Radio) interview with Professor Laurence Taggart |
| 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 | Public/other audiences |
| Results and Impact | This event allowed the N Ireland PI to present some of the main results of the study. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Bereavement Framework Wales/Bereavement Commission UK |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Findings from the study as they relate to the bereavement experiences of people with learning disabilities were shared with the audience - this was followed up with requests for an easy read briefing that we had produced. There was also an email exchange with the Chairs of Compassionate Cymru and the Bereavement Commission. |
| Year(s) Of Engagement Activity | 2022 |
| Description | COVID 19 and People with Learning Disabilities: Sharing Interim Findings of Wave 1 Surveys |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | A PowerPoint presentation was given on the background of the study and the interim results of Wave 1. We engaged in conversation regarding potential questions to ask in the Wave 2 surveys for the adults with mild learning disabilities and family survey of adults with severe/profound learning disabilities. Participants were very interested in how these current results and future results of the project could influence the policies and practices of the statutory services in providing care for adults with learning disabilities and supporting families. |
| Year(s) Of Engagement Activity | 2021 |
| Description | COVID 19 and People with Learning Disabilities: Sharing Interim Findings of Wave 1 Surveys and Looking Forward |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | A presentation on progress of the study and its future plans were shared with representatives of key third sector agencies, Welsh Government and Public Health was held online. Interim findings were presented concerning Wave 1. There was a discussion on future waves of the study and how people could engage with this. There was some discussion about vaccination programmes to people with learning disabilities as an area for further questioning. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Dissemination event with Scottish Government Learning Disability policy team |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | The purpose of this event was to share the findings from wave 1 of the coronavirus and learning disabilities study with the Scottish Government Learning Disability policy team. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Dissemination event with collaborating partner Promoting A More Inclusive Society (PAMIS) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | The purpose of this event was to share the findings from wave 1 of the coronavirus and learning disabilities study with our collaborating partner PAMIS. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Family Carers meeting |
| 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 | Three family carers attended a discussion where we shared interim findings from the research. They reflected on the findings and made some suggestions about additional questions or wording of questions for our next wave. They are also keen to know if we can map the findings geographically. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Interim Wave 1 Findings: Dissemination at participating organisation's online group session |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | Online group session involving members of participating organisation. Discussion of interim findings generate interest in how the findings could help policy in Wales and, new people expressing interest to participate at the next wave of the study. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Invited blogpost summarising Wave 1 project findings on the LTC-COVID |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Invited blogpost summarising Wave 1 project findings on the LTC-COVID website https://ltccovid.org/2021/03/29/new-report-the-impact-of-the-covid-19-pandemic-on-people-with-learning-disabilities-across-the-uk-findings-from-wave-1/ . The purpose of the blogpost is to raise awareness of the Wave 1 project findings widely, including internationally. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.ltccovid.org/2021/03/29/new-report-the-impact-of-the-covid-19-pandemic-on-people-with-le... |
| Description | Invited presentation for Local Government Association Health and Wellbeing Board webinar series: health inequalities |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Invited webinar giving an overview of health inequalities related to people with learning disabilities, including selected interim findings from Wave 1 of the project. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Invited presentation to Cabinet Office |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Invited presentation to 23 civil servants across the Cabinet Office Disability Unit, COVID task force and Able unit sharing and discussing findings from Wave 1 of the project. There was detailed discussion of various project findings in relation to existing policy issues. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Invited presentation to Cabinet Office |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Invited presentation to 5 civil servants across the Cabinet Office Disability Unit and COVID task force sharing and discussing interim findings from Wave 2 of the project. There was discussion of various project findings in relation to existing policy issues. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Invited presentation to DHSC |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Invited presentation to 5 civil servants in DHSC sharing and discussing interim findings from Wave 2 of the project. There was discussion of various project findings in relation to existing policy issues. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Invited presentation to DHSC civil servants |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Invited presentation to 6 civil servants within DHSC sharing and discussing findings from Wave 3 of the project. There was detailed discussion of various project findings in relation to existing policy issues. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Invited talk presenting project findings to self-advocates with learning disabilities at the NW Self-Advocacy Conference (online), organised by Pathways Associates. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Reporting headline project findings to approximately 60 self-advocates with learning disabilities. Four questions coming out of the project were discussed in workshops by delegates to form the basis of discussions between self-advocates and 'big bosses' in the afternoon of the conference. Plans made for future related activity. Providing some background evidence for self-advocates to have informed discussions about the impact of COVID-19 and building back better with 'big bosses' across North West England. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Invited to present project findings to the Learning Disabilities Professional Senate, 6 June 2022. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Reporting project findings to a meeting of the Learning Disabilities Professional Senate, with approximately 20 people present representing professional bodies relevant to people with learning disabilities. Outcomes or impacts unknown at this stage. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Joint UCEDD (Glasgow University Centre for Excellence in Developmental Disabilities) and NHS Greater Glasgow and Clyde research meeting (17th June 2021) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | The purpose of this event was to share the findings from wave 2 of the coronavirus and learning disabilities study with NHS colleagues. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Meeting 1 with collaborating organisations across the UK (England, Northern Ireland, Scotland, Wales) |
| 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 | Reporting interim findings from Wave 1 of the project to collaborating organisations of people with learning disabilities and family members across the UK, as part of a meeting also including these organisations reporting on urgent and emerging issues. The purpose was to share emerging findings with collaborating organisations, gain perspectives on what these emerging findings might mean, use emerging findings to inform potential questions for the next Wave of the project, and discuss how collaborating organisations in each country of the UK can use the project's findings to inform and lobby for effective support for people with learning disabilities in each country. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Meeting 2 with collaborating organisations across the UK (England, Northern Ireland, Scotland, Wales) |
| 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 | Reporting interim findings from Wave 1 of the project to collaborating organisations of people with learning disabilities and family members across the UK, as part of a meeting also including these organisations reporting on urgent and emerging issues. The purpose was to share emerging findings with collaborating organisations, gain perspectives on what these emerging findings might mean, use emerging findings to inform potential questions for the next Wave of the project, and discuss how collaborating organisations in each country of the UK can use the project's findings to inform and lobby for effective support for people with learning disabilities in each country. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Meeting with Dept Health & Social Care |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Reporting interim findings from Wave 1 of the project to policy and research personnel in DHSC, focusing on questions identified by them as of particular policy relevance. The purpose was to alert policymakers in England early to emerging findings, and raise awareness of other analyses we could do in response to DHSC requests. Since the meeting DHSC requested some specific further analyses and shared relevant findings on digital inclusion with the Department for Culture Media and Sport (DCMS). |
| Year(s) Of Engagement Activity | 2021 |
| Description | Meeting with Learning Disability England to share Wave 1 findings |
| 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 | The emerging findings from the Wave 1 survey were presented to members of LDE. They commented on these and gave advice about the messages we should focus on and also how we should disseminate the findings and which audiences should be targeted. They also made suggestions about further questions they would like asked in Wave 2. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Meeting with NHS England and Improvement Learning Disability and Autism Programme senior team |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Meeting with members of NHS England Learning Disability and Autism programme senior team including national clinical lead. To discuss the study findings so far, and ongoing collaboration to learn from the experiences of people with learning disabilities during the pandemic. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Meeting with Skills for Care Learning Disability and Autism team |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Meeting with members of Skills for Care Learning Disability and Autism team including. To discuss the study findings so far, and ongoing collaboration to learn from the experiences of people with learning disabilities during the pandemic. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Meeting with self-advocates from LDE |
| 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 | Three self-advocates attended a discussion where we shared interim findings from wave 2 of the research. They reflected on the findings and made some suggestions about additional questions or wording of questions for our third wave. They are keen that where possible we compare our data to the general population. They would like a question included exploring any silver linings of the COVID pandemic and they would like some extra questions to be asked of family carers directly. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Meeting with the Care Quality Commission (CQC) for England learning disability policy and analysis team |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | A meeting requested by the policy and analysis team at the Care Quality Commission (CQC) for England working on a national review of issues concerning services for people with learning disabilities during the coronavirus pandemic. This included a presentation of interim findings from the project and a discussion of project questions and interim findings. Project interim findings shared with CQC via the Department of Health and Social Care have already influenced some of the questions the CQC are asking in their national review. The CQC have requested some further specific analyses of the Wave 1 data and for the project team and CQC to meet again. |
| Year(s) Of Engagement Activity | 2021 |
| Description | National newspaper article focused on the project's findings |
| 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 | Public/other audiences |
| Results and Impact | Contact and sharing project findings with journalist Saba Salman, resulting in an article focusing on the project's findings in the Byline Times 17 September 2021, reporting the interim Wave 3 findings of the project. Article title: 'Everyone is forgetting about us' New research highlights how Government's social care reforms sideline those with learning disabilities. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://bylinetimes.com/2021/09/17/everyone-is-forgetting-about-us-new-research-highlights-how-gover... |
| Description | News piece: The adult social care market in England - report from NAO and the need for reform |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | A news piece, written by our partners in Learning Disability England, about the National Audit Office report about adult social care in England with links to the research project and findings, including a link to the recent webinar involving the co-PIs. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.learningdisabilityengland.org.uk/news/latest-news/tha-adult-social-care-market-in-englan... |
| Description | News report on research project Wave 1 findings (March 2021) |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | News item on BBC Midlands Today main 6.30pm bulletin on 25th March 2021 to coincide with the launch of the Wave 1 report from the research project. Included interviews with a person with learning disabilities and a member of the research team. The purpose was to raise awareness of the project and the Wave 1 findings. |
| Year(s) Of Engagement Activity | 2021 |
| Description | News report on research project launch - Channel 4 News (16 Nov 2020) |
| 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 | Public/other audiences |
| Results and Impact | News item on Channel 4 News main evening bulletin 16 Nov 2020 to coincide with the launch of the research project. Included interviews with a person with learning disabilities, a family member and a member of the research team. The purpose was to raise awareness of the project and encourage people and families to come forward to participate. After the programme, a number of people with learning disabilities contacted the project team, resulting in participation in the project and blogs for the project website. |
| Year(s) Of Engagement Activity | 2020 |
| Description | Online event organised by the Welsh Team to feedback interim findings from participants in Wales |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | 150 people joined an online event to share findings from study concerning data provided by participants in Wales. It is the first of a planned series of events designed to give researchers access to and host conversations about the future direction of services that will have been prompted by COVID19 restrictions. The session involved invited presentations from people with learning disabilities and carers. It end with a discussion between presenters and participants. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Online presentation for Learning Disability Network |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | The NE and Cumbria Learning Disability Network meets quarterly with its network members. The presentation was an update on the project findings and took place at an online meeting with 25 members who feedback to their colleagues from local authorities, acute trusts, self advocacy organisations etc. The presentation was followed by discussion around what network members could do to work differently with consideration for the research findings. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presentation and discussion on the Cohort 1 UKRI Coronavirus and People with Learning Disabilities Study findings |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | 60 people attended this event. This included people with learning disabilities who had taken part in the survey, families, service providers and third sector organisations. The research team presented findings from the UK survey, highlighting any Scottish differences in the data where relevant. The discussions on the implications of the findings and suggested actions were noted and shared at the later event with policy makers (Scottish Government Learning Disability and autism policy team and COSLA). |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presentation at IASSIDD international virtual conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Presentation of findings in relation to people with PMLD at an international conference attended by parents as well as researchers. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Presentation to LD-MAG, the Ministerial Advisory Group for Learning Disability (Welsh Govdernment) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Three researchers from the study group in Wales presented some details about the study and some key health related findings to senior professionals. This groups meets regularly to discuss Welsh policy, practice and education in relation to learning disability. The presentation was followed by a discussion and an invitation to return to the group with later findings. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presentation to UK Learning Disability Consultant Nurse Network |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Two researchers from the study group presented some details about the study and some key health related findings to senior professionals. This groups meets regularly to discuss policy, practice and education in relation to learning disability nursing. The presentation was followed by a discussion and an invitation to return to the group with later findings. Members of the network were told where to find regularly updated findings from the study |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presented project findings as part of invited public lecture at the University of Kent on 27th May 2022, the Jim Mansell Memorial Lecture. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | Discussing project findings within the context of a public lecture on the COVID-19 pandemic and people with learning disabilities. Outcomes or impacts unknown at this stage. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Presented project findings as part of invited public webinar hosted by King's College London on 14th June 2022 - The impact of the COVID-19 pandemic on people with learning disabilities. |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Discussing project findings within the context of a public webinar on the COVID-19 pandemic and people with learning disabilities. Outcomes or impacts unknown at this stage. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Presented project findings as part of invited talk to LGA councillors as part of 'Beautifully Ordinary Lives' event. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Outlining project findings, including most recent issues emerging from collaborating organisations. Outcomes or impacts unknown at this stage. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Presented project findings to Parliamentary and Health Services Ombudsman. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Invited to present and discuss project findings (including most recent issues emerging from Wave 4 of the study). Outcomes or impacts unknown at this stage. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Presenting Wave 1 project findings to a regular stakeholder webinar organised by the Department of Health and Social Care (DHSC) and NHS England. |
| 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 | Reporting and discussing Wave 1 project findings as part of a regular stakeholder webinar organised by the Department of Health and Social Care (DHSC) and NHS England. The purpose of the webinar was to raise awareness of both the project and the Wave 1 findings of the project, particularly to the range of stakeholders involved. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presenting Wave 3 project findings to a regular stakeholder webinar organised by the Department of Health and Social Care (DHSC) and NHS England. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Reporting and discussing Wave 3 project findings as part of a regular stakeholder webinar organised by the Department of Health and Social Care (DHSC) and NHS England. The purpose of the webinar was to share the Wave 3 findings of the project, particularly to the range of stakeholders involved. There was detailed discussion of various project findings in relation to existing policy issues. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presenting interim project findings to a meeting of the Adult Social Care COVID taskforce for England. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | Reporting interim findings from Wave 1 of the project to members of the Social Care COVID Taskforce Advisory Group on People with Learning Disabilities and Autistic People. This advisory group includes a range of people from organisations of people with learning disabilities and autistic people, family members, social care service providers and policymakers from the Department for Health and Social Care. The advisory group has a remit to advise the English government's Social Care COVID Taskforce. The purpose of the presentation was to alert a range of people and organisations to emerging project findings relevant to social care, and to indicate our responsiveness to requests for further analyses and co-developing formats for sharing the Wave 1 findings of the project. Some of the organisations at this meeting have requested further information, and DHSC have brokered an upcoming meeting with Care Quality Commission inspection personnel relating to their plans to include direct interviewing of people in future inspection regimes. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presenting interim project findings to a meeting with the Good Things Foundation, who are rolling out digital equipment to 5,000 people with learning disabilities across England (funded by the Department for Culture, Media and Sport (DCMS)). |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | Reporting and discussing relevant interim findings from Wave 1 of the project relating to digital inclusion as part of a meeting with the Good Things Foundation. The purpose of the meeting was to discuss how the research project and the Good Things Foundation could help each other in relation to the DCMS roll-out of digital technology to people with learning disabilities. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presenting interim project findings to a webinar organised by Learning Disability England. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Reporting and discussing interim project findings as part of a webinar on COVID-19 and people with learning disabilities organised by Learning Disability England. This webinar was free and open to anyone who wanted to attend, but was particularly marketed towards local authority personnel concerned with planning and providing services to people with learning disabilities. The purpose of the webinar was to raise awareness of both the project and the interim findings of the project, particularly to local authorities (and also the Association of Directors of Adult Social Services and the Local Government Association, who had officers on the webinar). |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presenting interim project findings to a webinar organised by the British Society of Audiology Cognition Special Interest Group. |
| 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 | Reporting and discussing interim project findings as part of a webinar on COVID-19 and people with learning disabilities organised by the British Society of Audiology Cognition Special Interest Group. The purpose of the webinar was to raise awareness of both the project and the interim findings of the project to audiology professionals working with people with learning disabilities. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presenting project findings as part of an inaugural professorial public lecture (in person and online) at Manchester Metropolitan University |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Reporting project findings as part of an invited public inaugural professorial lecture at Manchester Metropolitan University, with in-person and on-line attendance (a recording of the lecture will also be made publicly available). Approximately 180 people from a wide range of backgrounds, with diverse interests and experience attended. Outcomes or impacts unknown at this stage. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Presenting project findings in an invited keynote talk to the Canadian Health and Wellbeing in Developmental Disabilities Digital Conference, 10th February 2022. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Reporting project findings as part of an invited keynote talk to an online conference in Canada focusing on the health and wellbeing of people with developmental disabilities, with approximately 260 delegates including health and social care professionals and practitioners, people with learning disabilities and family members and service providers. Outcomes or impacts unknown at this stage. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Presenting project findings in an invited keynote talk to the Trinity Health and Education International Research Conference, online (Dublin, Ireland), 9 March 2022. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Reporting project findings as part of an invited keynote talk to an online research conference in Ireland focusing on health and education, with approximately 100 delegates including health and social care professionals and practitioners and service providers. Outcomes or impacts unknown at this stage. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Presenting project findings to a free public online conference on Long-Term Care and the Impact of COVID-19, organised by the LTC-COVID network (London School of Economics). |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Reporting project findings to a free public online conference on Long-Term Care and the Impact of COVID-19, organised by the LTC-COVID network (London School of Economics). 40 delegates were signed into the session, which was comparing findings from this UK project with a similar study conducted with adults with intellectual disabilities aged 40 years and above in Ireland (the IDS-TILDA project). Alerting an international range of stakeholders to the research project and some main messages from it, in an international context. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presenting project findings to a meeting of the ADASS Learning Disability & Autistic People Policy Network |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Reporting and discussing project findings to a meeting of the ADASS Learning Disability & Autistic People Policy Network. The purpose of the webinar was to share and discuss some main messages from the project, jointly decided on and presented by a project team member and a member of the project advisory group. There was detailed discussion of various project findings in relation to existing policy and practice issues. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presenting project findings to a public webinar on health inequalities and the impact of COVID-19 on people with learning disabilities, organised by the Local Government Association (LGA). |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Presenting project findings to a public webinar on health inequalities and the impact of COVID-19 on people with learning disabilities, organised by the Local Government Association (LGA). |
| Year(s) Of Engagement Activity | 2021 |
| Description | Public launch of six video and 5 voice recording responses to the England policy brief produced by learning disability organisations |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Project partner, Learning Disability England launched the videos alongside the project policy briefs on Tuesday 15th February. The videos are housed on a permanent page on the Learning Disability England website and were promoted through social media. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.learningdisabilityengland.org.uk/what-members-are-saying-and-doing/uk-covid-research/ |
| Description | Secretariat Technical Advisory Group Research and Development Sub-Group (Welsh Government) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Findings from the UK study - with some emphasis on Wales - were presented at a Teams meeting of Secretariat Technical Advisory Group Research and Development Sub-Group (Welsh Government). This is a group with an interest in health care research within Wales and thus it was an opportunity to share the situation of people with LD during the pandemic. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Short article in LGA First magazine coming out of an invited talk to LGA councillors as part of 'Beautifully Ordinary Lives' event. |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | First magazine is a monthly magazine for 18,200 local authority councillors. The article is outlining project findings, including most recent issues emerging from collaborating organisations. Outcomes or impacts unknown at this stage. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Third Online Event Wales |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | Findings from the study in Wales were shared with participants- the study team were joined by the authors of Locked Down- a report published in Wales about the experiences of people with disabilities in Wales in 2021. The event was organised to promote awareness of the study, engage with groups that helped promote the study and to consider the policy context in Wales. |
| Year(s) Of Engagement Activity | 2021 |
| Description | UTV Lunchtime News interview with Professor Laurence Taggart |
| 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 | Public/other audiences |
| Results and Impact | This event allowed the N Ireland PI to present some of the main results of the study. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Ulster Radio inverview with Professor Laurence Taggart and Agnes Lunny, CEO from Positive Futures and Janet Schofield, CEO from CAN |
| 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 | Public/other audiences |
| Results and Impact | This event allowed the N Ireland partners to present some of the main results of the study and highlight specific policy and practice issues that need addressed (please see the Research & Policy Brief for a full list of these issues raised from the research and engagement with stakeholder events). The 7 ASKS further framed these key policy and practice issues from the research and events sparking heated discussion from all the participants. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Welsh Government Consultation |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Findings from the study in Wales were discussed and focused mainly on the under-representation of people from BAME communities in the study. This was followed with an invitation to share findings with the wider Advisory Group (pending) and to join a Task and Finish Group concerning People with learning disabilities from BAME Communities. |
| Year(s) Of Engagement Activity | 2022 |