Any change to the Government’s COVID-19 lockdown message was bound to bring some apprehension as people try to understand how it will effect them and their loved ones. Quite rightly, attention and the promise of research has been given to find out why deaths related to COVID 19 disproportionately affect males, the BAME community, lower socioeconomic groups and our elderly population and those with underlying conditions such as diabetes and obesity.
Whilst disturbing, having this information is useful for individuals to calculate their personal risk and informs national health bodies who can seek to improve outcomes for these more vulnerable groups. It also makes a statement that these lives matter and as a country we want to understand and improve life chances for all. However until now there has been no mention of how COVID 19 affects those with a learning disability or indeed how many have died. Sadly this fact probably isn’t surprising to those who love someone with a learning disability. As Kate Spicer whose brother Tom has Fragile X syndrome so eloquently wrote in the Daily Mail:
“Learning disability is the last prejudice. Unlike the campaigns based on race, gender and sexuality, learning disability has always struggled to find – for want of a more tasteful word – sexy advocates. By this I mean people who can make the prejudice come alive to a wider audience – who can persuade our politicians and the public to sit up and take notice.”
Initially it was the case that suspected or confirmed deaths of those with learning disabilities and autism from Covid-19 would not be published until next year. Clearly that timescale was unacceptable and after much prodding, NHS England Medical Director Steve Powis has confirmed it will now publish the data, alongside the deaths of mental health patients who have died in hospital, from next week (it does not appear the data will include deaths in the private sector, care homes or community). They have also convened a panel of experts to analyse the death of people with learning disabilities and autism, something that should have been done much earlier given that we already know morbidity and mortality figures are much higher in this group.
It would be unfair to criticise the government alone for a lack of interest in those with a learning disability, indeed the mainstream media has also only focused on other vulnerable groups. Without media interest people with a learning disability find it hard to find a voice and exert the pressure needed to raise concerns about their community. As lockdown measures ease it is only right that people with learning disabilities, their families and carers are also given the information they need to assess personal risk and to make plans accordingly.
The Foundation anticipated that data about how Covid-19 affects those with Down Syndrome would not be forthcoming in a timely manner and so in collaboration with Positive About Down Syndrome responded to concerns within our community and launched its own survey. The survey is now closed and the results will be published shortly. It is hoped that the findings of the survey, along with government figures will provide some much needed information about our community.
We would urge all those in the Down Syndrome community to follow the work of the Foundation and to consider giving financially to support research that will improve the life chances of those with the condition. Now more than ever it is vital that high quality research is at the forefront of peoples’ minds so we can close the gap and improve life chances for all those with Downs Syndrome today. This crisis has shown that the needs of those with a learning disability are still not on the agenda and so in the meantime the Foundation continues to champion the medical needs of our community.