A campaign I have been working on with Learning Disability England (LDE) calls on the new prime minister to intervene over the healthcare of people with learning disabilities.
I am SeeAbility’s head of engagement, I lead the Listen Up team (a lived experience group) and am also a member of LDE’s representative body.
I was also co-national director for people with learning disabilities at the Department of Health over 2009–11, when Valuing People was in place – the last state strategy for people with learning disabilities.
From omission to neglect
Over the past year, I’ve become increasingly alarmed that learning disability healthcare is disappearing from NHS plans.
The first warning sign was when the NHS 10-year plan came out last year. Learning disability got just one mention – on page 36, if you’re interested.
As more and more strategies and guidance have been published this past year on what the NHS should be doing, less and less is being said about how it should be supporting people with learning disabilities.
So enough is enough. If nothing is being said, then we become even easier to neglect.
That’s why I’ve worked with LDE on a letter calling this out. We wrote directly to prime minister Andy Burnham to ask him to put the health of people with learning disabilities back into the heart of NHS plans.
The letter demands that people with learning disabilities are a part of the work to deliver a new national strategy. It calls for a better set of standards on what people with learning disabilities and their families can expect from the NHS. It demands more accountability and leadership locally and nationally, and to keep everyone accountable for making change happen. It calls for a workforce strategy and for the government to tackle health inequalities,
More than 1,200 people have signed the letter, alongside over 150 organisations. Self-advocates, family members, campaigners, researchers, learning disability professionals and other allies have come together to urge the government to ensure NHS plans give greater priority to the health and lives of people with learning disabilities.
There is an easy-read version of the letter on the LDE website.
No one is denying the good work that is going on every day. LDE’s Good Lives Framework, which Community Living has featured, is a great place to start.
But we all know the 20-year gap in life expectancy for people with learning disabilities has not really changed. It is even worse for people from a minority ethnic background or who have profound or multiple learning disabilities.
We know the learning disability nursing workforce has plummeted to nearly half of what it used to be, and that annual health checks are often a tick-box exercise. My last one certainly was.
We have to go beyond words and empty promises. Those promises to prevent hospitals from becoming long-term homes have not been met after 15 years. Getting community support is a constant fight for many. The digital shift in the NHS is going to leave more people with learning disabilities behind.
Discrimination and low expectations are still there. I mean, the NHS is still having to say out loud that having a learning disability is not a reason for not attempting to resuscitate someone. That is shocking.
Behind these facts are real people.
Low expectations are still there. The NHS still has to say out loud that having a learning disability is not a reason for not attempting to resuscitate someone
The NHS must create a strategy focused on the health of people with learning disabilities. It is the only way to ensure that all NHS services are focused on closing the gaps so people do not fall through them.
