Like many of you, I have just watched the news and read the papers.
Finally, Public Health England has published their report on Covid-19 deaths of people with learning disabilities in England.
Here is the summary, and here is the full report. It is a review of available data on the deaths of people identified as having learning disabilities in England, from the start of the Covid-19 pandemic until early June 2020.
These numbers should make headline news. Here is Ciara Lawrence, who has a learning disability herself, speaking on Channel 4 News last night (and can I just say well done Ciara, but also well done Jon Snow for not only headlining this but including people with learning disabilities among the experts to comment on this report).
Here are some of the shocking figures.
The rate of Covid-19 deaths among people with learning disabilities are estimated to be about 6.3 times higher than in the general population.
There are many estimates in the report, because there are so many ifs and buts, so many incomplete records and so much missing information. Most tricky of all is the fact that the majority of people with learning disabilities are hidden. Their learning disability is not noted in any records. The figure of “six times higher” is adjusted for those missing people. But even the most conservative estimates (looking at just the people with learning disabilities that we know about for sure) show that their death rate of Covid-19 is at least (AT LEAST) 2.3 times that of the general population. That’s the most conservative estimate, and shocking enough in itself.
If you are a young adult with learning disabilities (age 18-34), you are 30 times more likely to die of Covid-19.
Yes, you’ve read that right. THIRTY TIMES. It seems that the younger people with learning disabilities are, the greater the disparity with the general population. For higher age groups, the numbers are still very grim too. People with learning disabilities aged 35-44 are 19 times more likely to die of Covid-19. Those aged 45-64: 10 times more likely.
This pandemic is affecting the entire population of people with learning disabilities, not just the old.
I really don’t know what to say about all this.
Because haven’t we seen this coming? Haven’t we said it before, that people with learning disabilities are at huge risk, and we should pay attention?
The numbers on which this newly published report is based have been in the public domain for months. From families, learning disability organisations and campaigners to those with a real understanding of the numbers (thinking especially of Professor Chris Hatton here, who has kept us all looking at the numbers and thinking about the implications): Red flags have been waved since the early summer.
All I have now are questions. WHY and WHAT?
Why are these numbers so high? The report gives various possible reasons. Some of these are to do with physical health. The higher prevalence of health problems, such as diabetes and obesity. The fact that so many people with learning disabilities die of respiratory conditions, even before the pandemic.
Other possible reasons are social, emotional, cognitive and communication-related. The difficulty people may have in understanding and following lockdown restrictions and guidance on infection control. Or the challenges they have in communicating symptoms.
But the truth is, we don’t really know which of these factors have the greatest influence on death rates. That means that we don’t really know what’s the best way to address it.
What are we going to do about it? In a way the answer is obvious. Put resources into supporting and protecting this population. They should be right up there, on the VULNERABLE list. Of course care and protection needs to be individualised. Putting entire groups of people into isolation or give everyone the same shielding advice is not sensible. But what is sensible, is to ensure that all health and social care services recognise the dangers for this group of people. And most importantly: to ensure that they have the support and the resources to protect and support people with learning disabilities.
That means easy access to testing for all people with learning disabilities, staff and families. It means investing in giving people with learning disabilities the support they need to cope with lockdown measures. It means adjusting policies so that this can indeed be done. It may be that the very best person who can really help support someone with complex needs is a family carer currently prevented from visiting.
Among my many questions, there is a worry that this devastating report is going to be quietly forgotten. I have some niggles…
Why has it taken so long for this report to emerge? (The numbers were available in June. It is now November.)
And why isn’t this on the front page of all newspapers, and the headlines at all news channels?
I’m just imagining what would happen if the report had found this:
Students at universities in England, aged between 18 and 34, are 30 times more likely than non-students to die of Covid-19.
Can you see the headlines? The action? The investment in trying to understand this, reduce it, support students in whatever way was needed?
THAT is the kind of investment I want to see for the 1.5 million people with learning disabilities in the UK.