‘Government must act to stop people with learning disabilities dying under radar during pandemic’

Figures showing the sharp rise in deaths among people with learning disabilities during the coronavirus crisis are shocking and need proper investigation and increased priority, says self-advocate Gary Bourlet

Photo: enterlinedesign/Fotolia

By Gary Bourlet, engagement lead, Learning Disability England

I am sitting here looking at Care Quality Commission’s recently published data showing the number of deaths of adults with a learning disability receiving care during coronavirus. The data shows that between 10 April and 15 May there were 134% more deaths than in the same period last year.

This 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 11 of the lockdown 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.

Focus on older people’s care settings

There also seems to be a big focus on care providers testing staff and older people for the virus but not people with a learning disability and/or autistic people. Also, giving staff supporting people with learning disabilities the right resources and PPE (gloves, facial masks) has not been prioritised either, like it has for those who work in older people’s care settings.

The government does not seem to think we are vulnerable.”

But health inequalities and these recent figures would suggest things are very different. People with a learning disability and/or autism deserve to be properly safeguarded 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 about the figures and what they tell us, and what needs to be done to stop people with learning disabilities dying unnecessarily during Covid-19.

This means, at the very least, publishing weekly death rates of people with learning disabilities across all settings, knowing how many had an underlying health condition in these figures, and 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 MPs to say this isn’t okay 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.

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