People who count during Covid-19

By Gary Bourlet, Engagement Lead with Learning Disability England

I am sitting here looking at CQC’s latest set of data which shows the death rate of adults with a learning disability during coronavirus. The data shows that between 10 April and 15 May there were 134% more deaths over this time period than there was last year.

This data is obviously awful and shocking. These are individuals who are loved. These are people who have died. But what is also shocking is that it has taken until week 10 of the pandemic for the public to see these figures.

Furthermore, there is next to no explanation for the increased mortality rates. Although there are figures that show which of the deaths were those suspected to have Covid-19, this is about it.

We have not been told how many of those people had other serious underlying health conditions or whether they had even been tested for the virus. This would help us understand how having a learning disability can influence how likely you are to get the virus or experience more severe outcomes.

The lack of more detailed data is even more shocking because we all know that there are clear health inequalities that show those with a learning disability are more vulnerable to ill health. And that if you have a learning disability you are more likely to die prematurely.

Evidently, we need to understand how the virus will affect these individuals differently, if at all. Most importantly, we need to make sure people with a learning disability aren’t dying unnecessarily in this pandemic, without people noticing.

There also seems to be a big focus on care providers testing staff and elderly patients for the virus but not people with a learning disability and/or autistic people. Giving their support staff the right resources and PPE (gloves, facial masks) has not been prioritised either, like it has for those who work in elderly care settings.

People with a learning disability are still trapped in a geographical lottery as to whether they can access testing and the right PPE.

The Government does not seem to think we are vulnerable to this virus.

But health inequalities and these recent figures would suggest very different. People with a learning disability and/or autism deserve to be properly safe guarded from Covid-19 as well.

But I believe it is important we look to the future and discuss what can be done? The learning disability community is strong and needs to join together and tell the government that we need to know and understand more. More about the figures and what they tell us. And more about what needs to be done to stop people with learning disabilities dying unnecessarily during Covid-19.

This means, at the very least, weekly death rates of people with learning disabilities across all settings. Knowing how many had an underlying health condition in these figures. Knowing how many had actually been tested and were confirmed as having coronavirus.

I suggest we also need a statement from the government on how they are going to reduce these figures. This might mean people communicating with their local MP’s to say this isn’t OK and to ask them to put the pressure on the government.

We need reassurance and we need the government to act quick to stop more people with learning disabilities dying under the radar during this pandemic.