Change that leads to better lives

More questions than answers…

Following the conclusion of Richard Handley's inquest, NDTi's Health Lead, Anna Marriott, asks "why are multiple failings less serious than a single failure?"

Qustions inquiry

Richard Handley’s inquest reached its conclusion last month (almost 6 years after his untimely and avoidable death). Thanks to the tireless tweeting by George Julian, I and many others were able to follow the details of the inquest. We know that Richard died because of his well-established life-long problem with constipation. And we know that although the coroner acknowledged this is not a condition from which one is expected to die, and spoke of “gross failure” and “missed opportunity”, he did not reach a finding of neglect. From what I understand the coroner felt he could not attribute Richard’s death to neglect because there was not one single agency that had failed him, rather there were many.

Over a year ago, as part of my work with the PHE Learning Disabilities Observatory, we published guidance on the management of constipation for people with learning disabilities. Richard’s sister, Emily, wrote a foreword to this, where she spoke movingly of her family’s loss and their need to fight for an investigation into the circumstances surrounding his death. Since working on the Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD), constipation has become a topic I feel passionate about. The first time I came across the death of someone related to constipation I simply couldn’t understand it. After all, people don’t die of constipation. Well - it turns out they do; particularly if they have learning disabilities. But they shouldn’t. So, over the last few years, constipation has become something I have talked about extensively, and possibly inappropriately at times – apologies to those who have listened to me rant about it over dinner!

I have been wanting to write something following on from Richard’s inquest. Yet I have found it hard to know what to say. And I think that is because I feel I should have some answers and yet all I have is questions. I can tell people some of the things they can do to manage constipation (simple stuff like addressing diet, mobility, environment and medications) but what I can’t answer is how we stop such futile deaths.

So, I am left asking how is this not neglect simply because almost everyone neglected him? Why are multiple failings less serious than a single failure? I believe the coroner missed an opportunity to hold these agencies to account, and to send a message that health and social care organisations have a duty to work together to protect those they support. We know that people with learning disabilities are more likely to have a number of health issues and therefore have multiple care and support staff involved. It feels to me that they have now been given a ‘get out of jail free’ card - as long as they are all equally bad, they can’t be accused of neglect.

I’m left asking how long does it take for change to happen? What more evidence do we need to make changes? The coroner concluded that the provision of a care co-ordinator for Richard might well have prevented his need for hospital treatment, let alone his death. In 2013 CIPOLD recommended that a named healthcare co-ordinator should be allocated to people with complex or multiple health needs, or two or more long-term conditions. This recommendation would have been too late for Richard, but how many other people might it have benefitted since?

The national Learning Disabilities Mortality Review (LeDeR) programme is due to publish its annual report later this month. Sadly, I anticipate that many of the recommendations from LeDeR will be all too familiar. It is nearly 10 years since the publication of ‘Healthcare for All’, the independent inquiry into healthcare for people with learning disabilities. Some of the fundamental recommendations Sir Jonathan Michael made have yet to be put in place, despite being reinforced by subsequent reports of deaths of people with learning disabilities.

In a 2016 statement to Parliament, Jeremy Hunt said he had “asked the LeDeR programme to provide annual reports to the Department of Health on its findings and how best to take forward the learnings across the NHS.” He also promised that “many improvements will be made to the care of people with learning disabilities and many lives saved.” After 6 years of working on this issue it finally felt that perhaps, the government were serious about making improvements. So, if the LeDeR annual report shows evidence of problems with collaborative work between different agencies and providers, will that be enough to lead to meaningful change?

However, it is now over 1 year since that statement and I’m left wondering how the improvement promised by Jeremy will come about given that:

  • There is no longer an active learning disabilities programme board
  • Last year the Department of Health stopped funding for the National Valuing Families Forum and the National Forum of People with Learning Disabilities
  • The NHS England Learning Disability programme is only funded until March 2019
  • The contractual arrangement for the PHE learning disabilities observatory will come to an end at the end of March 2019
  • The Transforming Care programme only runs until March 2019
  • The learning disability nursing workforce has fallen by a third since 2010 and there are now fewer learning disability nursing students in training than ever before.

So where do we go from here? Who will be there after next March to lead change and make improvements to reduce the health inequalities experienced by people with learning disabilties? I wish I knew the answers but I’m sorry, at the moment, all I feel I have is questions.

This blog is part of our series of blogs and interviews highlighting 25 years of NDTi's commitment to change.

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