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SCIE’s ‘Tackling inequalities in care for people with learning disabilities and autistic people’ project explores inequalities, such as delays in diagnosis, lack of reasonable adjustments, and ‘diagnostic overshadowing’, and the ways in which they can be addressed.
During the pandemic, a report from Public Health England (2020) found that people with learning disabilities were four times more likely to die from COVID-19 than the rest of the population, with researchers estimating the real rate may have been as high as six times, once accounting for unregistered deaths.
Prior to COVID-19, research (Heslop, The Lancet, 2014) revealed a lack of awareness, understanding and skills among the health and social care workforce about the health risks facing people with learning disabilities and how to ensure that that they receive the right care.
People with learning disabilities and autistic people continue to experience poor health outcomes in comparison to the rest of the population, leading to lower life expectancy and a higher number of avoidable deaths (House of commons committee report, 2024).
As a not-for-profit independent and impartial charity, we are driven by improving social care, using the skills and resources we have to achieve our vision of a society that enables people who draw on social care to live fulfilling lives. Following the Public Health England report, SCIE sought funding from the National Lottery Community Fund and other charitable organisations to address the issues that people with learning disabilities and autistic people were clearly facing.
With this guidance, we aim to create an understanding of the inequalities and the areas that health and social care services can act upon to address them, and to close the gap in skills and knowledge in the health and social care workforce.
This guidance is not exhaustive and builds on the tools available across the health and social care sector to support people with learning disabilities and autistic people. While reference has been made to specific documents throughout, feedback from people with learning disabilities and autistic people has been paramount.
Co-production with people with lived experience of social care underpins and informs all that we do at SCIE, enabling us to recommend best practice in social care. We therefore established the ‘SCIE Fliers’, our co-production group, working with them to understand experiences of the pandemic, drawing out lessons and opportunities for learning that could be shared to support the sector and ultimately support improvements in care and support.
The initial conversations that took place as part of this project have been documented in several materials, titled ‘Am I Invisible’, which have been used to inform the final guidance document.
Working alongside the SCIE Fliers ensured we understood their experiences and views on what needs to be different. We also facilitated a series of events with different sector partners, to showcase the work developed by the co-production group, and progress the conversation further.
A video has also been created in collaboration with the SCIE Fliers to sit alongside the guidance, as an audio-visual guide for professionals. The SCIE Fliers worked with an ethnographic research and videographer to script and storyboard the video, as well as feature in it.
Many interesting anecdotes and conversations were shared during these scripting sessions, which have been recorded in the ‘Making Things More Equal’ easy-read document below.
Sharing this guidance with networks will help to empower professionals when supporting those with learning disabilities and autistic people, so we can help to address the inequalities in services. This can be done via staff teams, social media, organisational newsletters and in workplace training.
Find out more about how SCIE as your not-for-profit partner can support you with co-production and consultancy more broadly, where we work with you to identify and implement improvements across adults’ and children’s social care. If you would like to talk to our team about how we can help, please complete an enquiry form.
We want to thank the various charitable trusts and foundations that have kindly made this project possible. This includes the National Lottery Community Fund, the Santa Barbara Heights Charitable Trust, and others who wish to remain anonymous. If you are interested in supporting our work, or would like to hear more about how you could partner with us, please contact us at fundraising@scie.org.uk.
