The NHS Track Record with Learning Disability and Autism

Did you know that every single day 3 adults with a Learning Disability die unexpectedly and prematurely in our NHS hospitals?

Did you also know that a diagnosis of a Learning Disability means that women will die on average 20 years earlier than their cognitively unimpaired sisters, cousins and friends, while men with a learning disability also die younger too, on average 13 years before they should?

People with Autism also get a pretty raw deal, on average their life expectancy is 16 years shorter than for those without autism.

The Simple Things that can Make a Difference

These vulnerable people are unable to communicate as well as the general population, and it’s often the case that a very small adjustment would make all the difference to the quality of healthcare that they receive. Simple things like taking a little bit longer with them in clinic to ensure they have understood and have been able to explain all their symptoms properly.  Pictures on hand to help them communicate better.  Kindness, patience and acceptance can all help enormously too.

Lack of Staff Training in Invisible Disabilities

Sadly, NHS front line staff generally don’t get any training in how to reach out and make that essential difference to people with a learning disability or autism. Many don’t see it as their responsibility, they don’t see it as an integral part of their work. Yet every day, thousands of adults with an LD or Autism are treated by the NHS and the staff don’t always realise. Their disabilities are often invisible.  Without training in how to recognise the nuances of behavioural or communication differences, staff often just don’t know that that they are talking to someone who needs that little bit of extra help.

The new Advisory Group

That’s why I just had to apply when I saw that NHS England wanted to form an Advisory Group to help them understand better why these vulnerable adults are getting such a raw deal from our health service. Way back in July I saw a post about it on Facebook, and I dropped everything else I was doing that morning so I could fill out the online application form to put myself forward.

So did over 250 other people, which is so encouraging to know that so many people care enough about getting this right. Weeks later I was delighted to get a phone call to say I was one of the 12 people they had chosen for the group. NHS England see us as experts, not because we have clocked up impressive qualifications and letters after our names, but because we all have personal experience of what healthcare actually looks and feels like when learning disability or autism are part of the patient experience.

Of the 12 people making up this new advisory group,  four of us are family carers, four of us have a learning disability and four of us have autism. On Friday we met for the first time in Leeds, sitting around the table with the NHS England LD Engagement Team.

A Huge Responsibility

I’d been a bit apprehensive beforehand. How would we collectively contribute to the discussions so that all our voices, experiences and insights might be heard? What if the whole thing was just a tokenistic, tick box exercise, and in the end nothing would come of it?

It felt like a huge responsibility on my shoulders as I walked into that room. I knew that thousands of people and their families desperately need things within the NHS to change to ensure that healthcare can be adapted to meet their needs effectively, and that early deaths can be prevented. I hoped against hope that we might be able to make a difference, to influence policy in a meaningful way that creates a better system for those who often cannot speak for themselves.

They “Got it”!

Within minutes of sitting down around the table, my fears evaporated. As well as our newly formed advisory group, there were several members of the NHS England LD Engagement Team, all going out of their way to welcome us and make us feel valued and accepted.  Two of the staff on the LD Engagement Team have a learning disability themselves, and it was wonderful to see how they took an active and equal role in every aspect of the day as it unfolded. This was a team that understood, that “got it”, and shared our own passion in wanting to make things better.

Inclusion as it’s Meant to Be

Inclusion is a simple concept, yet it’s something I’ve rarely seen properly happen in real life,  but it happened on Friday in that meeting.

Inclusion means that everyone, regardless of disability, is an equal part of the team, valued, validated, heard and able to contribute in a meaningful way. Introductions were made, discussions opened, and within 20 minutes or so I could barely remember who had told us about their learning disability or autism in those introductions, because it simply wasn’t relevant. Everyone was sharing their thoughts, their fears, their stories and their hopes for a better way of doing things. This diverse group of people were collaborating, building on each other’s ideas, throwing suggestions into the mix and working together to paint pictures of what things could look like in the future.

They Listened

We talked, they listened. They asked questions, we answered as fully as we could. When we spoke, they took copious notes, drew pictures, created posters and wanted to know more and more. The instinctively knew the right questions to ask.  However, although the advisory group and the NHS England team had different roles as we sat around the table, at no point did it ever feel that it was “them” and “us”. We were all pulling together supportively to create a body of ideas and suggestions that could work to improve healthcare for everybody.

By the end of the day, there were reams of paper which recorded every nuance of every discussion, with clear plans for topics to discuss at future meetings, all things which had been raised as concerns from around the table.

It was a brilliant day, and I left filled with hope about how things can work when everyone wants them to. How everyone has a voice and something valid to share, if only people were always able to take the time and to listen.

Making it Happen

I also know how hard it’s going to be to get any ideas we suggested to filter through the layers of bureaucracy, management and NHS culture to reach the shop floor effectively. It was clear that NHS England are with us and want things to get better – it’s the implementation that will be the really hard work. Change doesn’t happen overnight, but it will happen, we’re going to make sure it does.

How you can help

You can help make that change happen faster too. You can follow @LDEngagement on Twitter, and there is also a Facebook Closed Group that you can join, called “NHS England Learning Disability Engagement”. If you have any concerns about your own or a family member’s care, please get in touch and let the team know.  The NHS England LD Engagement Team also have a website, https://www.england.nhs.uk/.

If you’re a clinician, you can help too. Anyone you see may have an invisible disability, so just treat everyone as if they matter, with kindness and compassion even when they may be reacting a little differently or may need a bit more help in understanding what you’re saying. As we showed on Friday, the things we have in common far outweigh the things that separate us, and when everyone pulls together amazing things can happen.

Yvonne Newbold

October 2016

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