Statement from the Valuing People's Alliance on the Long awaited reports on deaths of people with learning disabilities from Covid 19

Two reports last week highlighted the health inequalities that people with learning disabilities face.

Public Health England’s and University of Bristol’s reviews into the deaths of people with learning disabilities from Covid-19, found that they were between 3.6 and 6 times more likely to die of the disease than the general population. For people with learning disabilities, deaths are spread more equally across ages, therefore being younger is not a risk reducing factor. And like the general population, those from BAME backgrounds are disproportionately affected.

Not only is this desperately sad and unacceptable but our responses now matter. The knee jerk reaction to try to overprotect, and close people behind their doors to keep them safe, risks reducing people’s rights and increasing the social exclusion people already face which underpin health inequalities.

What we know from these reports is that there are factors in how and where people are supported that can make a difference. People living in smaller care settings did not face the same levels of Covid-19 and related deaths as older people in larger care settings. This points to the need to support more people to live in their own smaller homes of choice, with one or two friends and contained staff teams that work just with them, instead of the default system in which congregate living is the only thing on offer.

This calls for us to continue to fight for the reasonable adjustments in health that can make the difference between someone getting the right treatment when they need it and someone getting the help never or too late.

We also need to know what the reality is. Data remains an issue. The PHE report draws on multiple imperfect sources of data to extract the learning about what is going on. Many people with learning disabilities aren’t known to their GP or social care, and it can be hard to make sense of the patterns of disadvantage that people face. We need to address this so that we better understand what is going on. And so that people with learning disabilities, their allies and supporters, can use this knowledge to hone in on the changes that will make the biggest differences.

As a Valuing People Alliance we have worked with people with learning disabilities, their families and paid supporters through the pandemic. We have tried to support people to have their voice heard, influence policy, understand the choices available to them and be able to act to keep safe and well. We recognize we all need to do more and different to properly learn from these reports so people with learning disabilities stop being the community paying such a significant price through Covid-19.

The Valuing People Alliance

Sam Clarke LDE

Ben Higgins BILD

Madeline Cooper-Ueki NDTi

Supported by:

Jabeer Butt, Race Equality Foundation

Email the Valuing People's Alliance via Madeline.cooper-ueki@ndti.org.uk if you would like to include your support for this statement