Change that leads to better lives

The LeDeR Report: Change takes time. But how much time?

Anna Marriott discusses the lack of change in this week’s report and why that’s the problem.

Le De R thumb

I’m getting bored now. It’s only Tuesday and we’re already on the third report this week that presents evidence of the multiple and varied ways in which we are failing people with learning disabilities and/or autism. This includes locking up children for years in secure hospitals, segregating people within hospitals, often miles from their home and of course, failing to stop them dying from preventable causes years earlier than other people. And I’ve still got Panorama’s programme tomorrow night to look forward to. Don’t get me wrong, it’s not the horrific stories of abuse, neglect and lack of care I’m bored of. It is the familiarity of the recommendations and the rhetoric of the responses.

Maybe there isn’t much else going on in the news this week, so the powers that be are allowing us to give this issue all the attention it deserves. But, let us not get drawn into arguments of burying bad news in an election week before a bank holiday. Anyway, this is all old news. People caring for, and working with, people with learning disabilities won’t be surprised by any of the content of the findings and recommendations of these reports. The messages haven’t changed. The solutions haven’t changed. Attitudes haven’t changed. Nothing has really changed – and that’s the problem.

The argument used to be that there wasn’t enough evidence or guidance. So, the government funded the Confidential Inquiry into premature deaths of people with learning disabilities to provide the evidence. And it did – it gave a clear message that people with learning disabilities were dying years earlier than people in the general population, often of avoidable causes and it gave us an idea of the scale of this scandal. Alongside CIPOLD the government funded the Learning Disabilities Observatory to help provide better, easier to understand, information and guidance on the health and wellbeing of people with learning disabilities. We have more evidence and guidance than ever before, so what IS stopping us making more of a difference?

It’s not surprising that this year’s LeDeR report shows little difference to the findings from last year. Even the most optimistic among us weren’t suddenly expecting to see people with learning disabilities getting timely medical treatment and living longer. We know that change takes time. But how much time? Let’s be honest, we have had reports for well over a decade that have described the same problems and made the same recommendations. If people with learning disabilities dying early and needlessly really mattered to people, then that would be enough time to make a difference surely? So, the awkward question is who doesn’t it matter to?

We know it can be done. In Cornwall1 they employed two screening liaison nurses to improve the uptake of the cancer screening programmes by people with learning disabilities. When they started work the uptake rate of breast screening by women with learning disabilities in one area was just under half that of the general population. Two years later the attendance rate by women with learning disabilities was slightly higher than for women in the general population. This demonstrates that with the right resources and with passionate, dedicated people driving the work a significant impact can be made in a couple of years. Given we are not seeing national change on this level it suggests the issue simply isn’t important enough to people.

You might be forgiven for thinking this is all in hand and that we have made great strides towards reducing health inequalities for people with learning disabilities over the last decade. After all, why else would we no longer need the National Forum of People with Learning Disabilities or the National Valuing Family Forum (whose funding was withdrawn in 2017). And of course, that will be why funding for Public Health England’s learning disability IHaL programme has been significantly reduced. However, unfortunately, the reports this week show we haven’t made much progress at all in terms of reducing premature death or getting people out of assessment and treatment centres.

Over the last decade multiple reports have made the same recommendations (around reasonable adjustments, listening to families, the need for training and co-ordinated care etc. etc.) and it IS getting predictable. So, if all the evidence points towards the need for these things then, common sense says that these are the things that need to be addressed. Whilst we may keep repeating the same recommendations, we can’t stop making recommendations about things that need to happen simply because it has all been said before.

So, I am sorry if this is getting boring but enough excuses. 71 people with learning disabilities (that we know of) died because their standard of care and support wasn’t good enough – the recommendations still stand. Just get on and do it!

1. Marriott, A., Turner, S., Ashby, S. & Rees, D. (2015). Cancer screening for people with learning disabilities and the role of the screening liaison nurse. Tizard Learning Disability Review, 20(4), pp. 239 – 246.

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