Vaccination joy: A good week for people with learning disabilities in the UK

I never thought I’d see those words in the same sentence, during a pandemic no less:
LEARNING DISABILITY. GOOD WEEK.
But oh, the joy of those headlines.

The Joint Committee on Vaccination and Immunisation (JCVI) has advised the government that EVERYONE on the GP learning disability register should be prioritised for a Covid vaccine.

Not just (as had been the case so far) those with Down Syndrome or those whose learning disability is severe or profound. Now, everyone who is on their GP’s Learning Disability Register will be fast-tracked for vaccination.

The relief that common sense has prevailed. Or (as the BBC1 newsreader announced it) people power has prevailed. It is an extraordinary turnaround, and worth pondering. How did this happen? What can we harness and build on? Because believe me, there are so many more turnarounds needed before people with learning disabilities are truly part of our society, treated equally, with equal chances of being healthy and happy.

What hasn’t prevailed, it seems, is a true understanding from the key scientists and policy makers of the nature of these inequalities, and indeed the nature of learning disability.

I was ecstatic on the day this news was announced. Messages flying around on social media and WhatsApp. My phone red-hot. My conversations with my colleagues, advisors and friends with learning disabilities were particularly wonderful.

Me: “Have you heard the news!”
Amanda: “I have! My support worker told me! I can’t believe it!”
Richard: “My news report last week on the BBC and Jo Whiley has done some good!”
Vince: “It just goes to show that our voices can make a difference!”

(Here they are, speaking on the BBC news on 24th January)

So I nearly choked on my muesli when I read in the morning paper what Professor Anthony Harnden, deputy chair of the JCVI, had said: Despite adding everyone on learning disability registers to the priority list, people with mild learning disabilities should not approach their GP yet.

“We don’t want everybody with a relatively mild learning disability to come forward to be vaccinated now. That would cause problems because there are over 1.5 million of those individuals.”

Hang on a minute. Yes, there are well over a million people with learning disabilities in England, but that’s the best possible estimate. Less than a quarter (about 250,000) are registered with their GP as having a learning disability. This population is hidden, and that’s part of the problem. Those with mild learning disabilities are most likely to be part of this hidden group, yet they face significant barriers in accessing equal healthcare.

One and a half million people approaching their GP saying “I have a learning disability, please put me on the register, please give me the vaccine”? Wouldn’t that be brilliant. It would mean that they would be able to get a free annual health check, they would be asked what reasonable adjustments they need (more time for appointments? Easier information? Bring it on!). It is a dream scenario. It might be a good start in preventing future avoidable deaths.

The fact that this is seen as a nightmare scenario by the very people who advise on these matters, shows a worrying degree of mis-understanding about the root causes of inequalities in healthcare. Poorer health outcomes don’t just stem from underlying health conditions (although there are plenty of those to be had among people with learning disabilities). They also stem from people struggling to negotiate the healthcare system, unconscious bias among healthcare staff (we all have it, I’m no exception, it needs constant vigilance), and lack of reasonable adjustments.

So, all hail to People Power. The power of the media, too, in not just bringing this to the country’s attention, but keeping it in the headlines day after day. Jo Whiley and her sister Frances were, of course, the catalysts, and we cannot thank them enough. To talk to the media when you are torn apart by worry about your sister, fighting for her life in hospital, cannot be easy, however much you are a celebrity used to microphones.

Frances Whiley with her sister Jo

But so many others were ready to back her up, as they have been campaigning for months. People with learning disabilities themselves, and their families and carers, were at the heart of this. So many have been shouting about their concerns and distress.

Mencap (who have now moved swiftly along to campaigning for people with learning disabilities to join the GP learning disability register. Share this if you can!).
The PCPLD Network – we put out a campaign video in November and a vaccination webinar last month
Academics, supporting them with facts (like Professor Chris Hatton, for example, whose regular analysis of all the different and often confusing data I rely on).

But what was absolutely needed was the public to get behind it, and not shrug their shoulders: “Oh well, yes, very sad, but what can you do.”

I think what happened is that people began to see Frances as a PERSON.

Someone who matters, someone you really want and need to be part of your community and family, not in spite of who she is, but because of who she is. This message was also given by the mainstream news channels, who gave a voice to people with learning disabilities themselves as the main experts. (It was a joy to work with the BBC team on this!)

But unconscious bias remains. It is very hard to see the discrimination and disadvantage unless you are affected by it.

Being seen as “other”, less important, less worthy of saving (don’t even get me started on inappropriate DNAR orders), less worthy of vaccinating despite the evidence screaming of risk.

Perhaps it is telling even in the most innocent looking of news headlines, like this one: A huge relief for families… 

You can’t argue with it. It is indeed a huge relief for families. But isn’t the relief greatest for people with learning disabilities themselves, who are now a step closer to seeing their families again, and to going back to the life they know? What this headline shows me is that many people can put themselves in Jo Whiley’s shoes, and that is a great step forward, but we are not there yet.

We need to put ourselves in Frances’ shoes.

2 thoughts on “Vaccination joy: A good week for people with learning disabilities in the UK

  1. So very glad for all your work. It is inspiring and wonderful to see people speaking for themselves on national media. More and more needed.Well done indeed Irene and team!!

  2. This is fantastic news Irene. The day centres need to be opened and this is one way that we will have something to look forward to.
    People with LD are suffering physically and mentally as well in this lockdown.

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