Learning from the Learning Disability Mortality Review

One evening in 2007, I was watching the BBC evening news when Martin’s story broke.

Martin was 46 and had suffered a stroke. He had spent 26 days in hospital without food, which left him so weak that he died. Martin also had Down syndrome and severe intellectual disabilities. He was one of six people with intellectual disabilities who had died in hospital and who featured in Mencap’s Death by Indifference report. It claimed that people with intellectual disabilities are at risk of early death because of institutional discrimination in hospitals.

The recommendations? Make sure that hospital staff:

  • Understand about intellectual disabilities.
  • Involve families.
  • Understand the law around capacity and consent to treatment.

It was hardly rocket science.

Fast-forward eleven years.

Last week I was watching the BBC evening news when the story broke of several people with intellectual disabilities who had died too early because of healthcare failings. Their stories had been unearthed by the Learning Disability Mortality Review (LeDeR) Programme, who have just published their annual report.

The recommendations? Make sure that hospital staff:

  • Understand about intellectual disabilities.
  • Work together with other agencies (including families).
  • Understand the law around capacity and consent to treatment.

Spot the difference.

I can’t, and neither could the authors of the report.

“Most of the learning from mortality reviews presented in this annual report,” they write, “echoes that of previous reports of deaths of people with learning disabilities, with the same issues repeatedly identified as problematic over the past decade or so.”

There was the Independent Inquiry in 2008, led by Sir Jonathan Michael, who was shocked to discover that the experiences of Martin’s family were “by no means isolated, despite a clear framework of legislation against discrimination”. His report, Healthcare for All, made a string of recommendations.

You guessed it:

  • Make sure staff have mandatory training in intellectual disabilities.
  • Provide reasonable adjustments.
  • Work with families.

The Michael report also recommended a Confidential Inquiry into Premature Deaths of People with Learning Disabilities. This duly happened. It lasted 3 years, investigated 247 deaths of people with intellectual disabilities, and published the final report in 2013.

Lo and behold! People with intellectual disabilities were at risk of early death because of healthcare failings.

The recommendations?

  • Identify people with intellectual disabilities within the healthcare system.
  • Provide reasonable adjustments.
  • Ensure staff understand the law around capacity and consent.

The Learning Disability Mortality Review Programme is important for wide-ranging reasons, from the humanitarian to the economic.

It collates and shares anonymised information about the deaths of people with intellectual disabilities in England, so that common themes can be identified, and learning points can be turned into policy and practice improvements. This has been done effectively in a number of states in the USA, where themes picked up at mortality reviews for people with intellectual disabilities have led to further questions and investigations, and crucially, to action.

For example…

Compared with the general population, why were people with intellectual disabilities 30 times more likely to die from aspiration pneumonia?

(The answers are interesting. They found, for example, that 1 in 5 people who died from pneumonia had received dental work or were sedated in the few weeks before the death; or they aspirated during seizures; or they ate quickly or stole food. If you know this, you can make sure the staff knows it too, so they can raise alarm bells if someone who recently had their tooth extracted under sedation suddenly develops a high temperature).

Another one. Why did so many people with intellectual disabilities die following an accident, and in particular following a fall?

And: Why did relatively few people with intellectual disabilities access hospice services?

(I learnt all this from an interesting presentation recommended in the LeDeR report, which you can watch here on YouTube.)

I would hope that these are the kind of issues a mortality review picks up. And indeed it does. The CIPOLD report noted the low rates of access to specialist palliative care services. The latest LeDeR annual report notes the very high rates of deaths from pneumonia.

In 2018, I want to read what the plans are to address these things. Preferably with time scales and funding plans.

What I do NOT want to read in 2018 is that healthcare staff were unaware of the fact that they needed to make “reasonable adjustments” to the care of a person with intellectual disabilities. Or that there were no capacity assessments. Or that services failed to work together, and failed to listen to families.

What I want to know is this…

Given the recommendations in 2007, 2008, 2013, etc etc, that services should work together, how can it happen in this day and age that someone with intellectual disabilities dies following possible urinary sepsis, having been readmitted to hospital after being sent home with a catheter, where his care staff knew nothing about catheter care?

Perhaps these questions are much harder than rocket science, after all.

2 thoughts on “Learning from the Learning Disability Mortality Review

  1. I wish I’d seen this this morning – because I was teaching dental students from University of Plymouth at lunch time Even without having the benefit of this blog, I talked about learning disability being not so much a diagnosis as a risk factor. For poverty, unemployment, victimisation, restriction, physical and mental ill-health and premature death. We covered communication, reasonable adjustments, consent and capacity and the risks of anaesthesia. Preparing the talk I did discover some hopeful innovative practice, including a student LD nurse from University of S Wales and a previous cohort of Plymouth Dental Students. But also, in my local paper this week, the report of a coroner’s inquest on a man with DS who had died of the complications of dental anaesthesia. Perhaps the most depressing thing was trawling through my old slides to prepare the lecture and finding how much of this you and I already knew in 2005.

  2. Pingback: georgejulian.co.uk - When is a world first not a world first?

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