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Statement on the long awaited reports on deaths of people with learning disabilities from Covid 19

Statement from the Valuing People’s Alliance

Two reports published last week shone a light on the health inequalities that people with learning disabilities face. The papers by Public Health England and the University of Bristol found that, in comparison to the general population, people with learning disabilities were between 3.6 and 6 times more likely to die from Covid-19. These reviews concluded that the mortality rates for people with learning disabilities were not affected by age, indicating that youth does not reduce the risk of dying. And akin to the general population, those from BAME backgrounds with learning difficulties are further disproportionately affected. 

This is both horrifying and inadmissible, and it is clear that the response to such findings matter now more than ever. The government’s initial solution of implementing strict shielding measures exacerbated feelings of social exclusion which underpin many existing health inequalities. 

The reports stated that the way in which people with learning disabilities are supported can make a difference, for instance people living in smaller care settings did not face the same levels of Covid-19 and related deaths as people in larger care settings. This lends evidence to suggest it is beneficial for people to live in their own homes, with one or two friends and contained carer teams that work just with them, instead of the current default system whereby congregate living is the only option available.  

One fundamental issue we face in overcoming these health inequalities is in the collection of data. Many people with learning disabilities aren’t known to their GP or social care services; thus it can be challenging to make sense of the patterns and draw any conclusions about the disadvantages that people face.  This issue needs to be addressed promptly to give us a better understanding of the real picture, so that people with learning disabilities, their carers, and allies can use this knowledge to hone in on the changes that will make the biggest difference.

In partnership with Valuing People Alliance, along with others in the Health and Wellbeing Alliance, we have worked with people with learning disabilities, their paid supporters and families throughout the pandemic. This partnership aims to ensure that their voices are heard, they understand the choices available to them and are able to keep safe and well. It also aims to use these findings to influence policy. We recognise that we all need to do more: we must engage with and learn from these reports so that people with learning disabilities stop paying the highest price as a result of Covid-19.  We must continue to fight for practical adjustments to health services to ensure that necessary treatments are provided to those in need before it is too late. 

The Valuing People Alliance

Sam Clarke LDE

Ben Higgins BILD

Madeline Cooper-Ueki NDTi

Jabeer Butt REF