Ordinary Everyday Deaths: The Patient Safety of People with Learning Difficulties

The worst kind of discrimination is the discrimination that hides in the ordinary actions of everyday life and perhaps one of the most violent and oppressive things that we can do to any minority is to make their deaths appear ordinary as if it were simply part of the natural order of things. Last week an independent report was published into Southern NHS Trust’s practice and policies on investigating the unexpected deaths of people in their care.

The report was commissioned by NHS England and amongst its findings was the simple statistic that less than 42% of unexpected deaths of people with learning difficulties were investigated by the Trust. This report was then followed by the results of a Freedom of Information request carried out by the Guardian which sought to establish whether or not aspects of this trend were reflected in other Trusts. The Guardian report found that just 36% of the unexpected deaths that Trust’s reported, were investigated and that 3 Trust’s hadn’t investigated any of the unexpected deaths of people with learning difficulties at all. As the report states:

The data has provoked serious unease as it appears to show that recently exposed failings at the Southern Health NHS trust, in the south of England, are widespread.

This shouldn’t actually surprise anybody. The fact that the Chief Executive of Southern NHS Trust was still in post following the publication of the report was a reflection of the fact that NHS England was probably more than aware of the unexceptional nature of Southern’s performance. Or to put it more bluntly: not investigating the unexpected deaths of people with learning difficulties would appear to be ordinary and everyday practice in the NHS.

But how much does it matter.

Investigating the unexpected deaths of patients is one the core practices of patient safety and without patient safety our hospitals would be far more dangerous than they are at present. Hundreds more people would die in our hospitals; rates of hospital acquired infection would spiral out of control; deaths from poor practice in acute trusts, in surgery and on medical wards would increase significantly if our Trusts were patient safety free zones.

Patient Safety is a professional and cultural practice that saves lives and that is only properly effective if it takes account of all of the Human Factors involved in maintaining an organisation as a safe place. This is no less true for people with learning difficulties than it is for any other community. Yet remarkably little work exists highlighting the way in which patient safety practice can and should be adapted to make it more inclusive of people with learning difficulties. But even without adapting patient safety practice to the needs of people with learning difficulties, applying the core principles of patient safety should be a minimum for any Trust and investigating unexpected deaths is where those principles begin.

It is clear that Southern NHS Trust has failed to implement the fundamentals of patient safety practice and has additionally failed to adapt its patient safety practice to the needs of the community that it is meant to serve and if this were exceptional it would be worrying enough, but the Guardian report indicates that Southern is far from exceptional and because of this it is fair to assume that their failure has until now passed unobserved across the NHS, as ordinary and unremarkable practice.

The impact of this omission on the lives of people with learning difficulties is likely to be significant but difficult to quantify. It is very likely to involve the premature deaths of hundreds of people; and it shouldn’t surprise us that the average life expectancy of a person with a learning difficulty is so much lower than that of other communities or ” that 1,238 children and adults with learning disabilities die every year in England as a result of receiving poor care from the NHS”. Equally it shouldn’t surprise us that Connor Sparrowhawk died in the bath and that the Trust sought to categorise his death as natural and unremarkable.

Over the years there will have been many similar deaths, most of which will have been passed by and most of which will not have been investigated. And with each uninvestigated death has come the continued likelihood of its recurrence and each recurrence has increased the sense, that the premature death of a person with a learning difficulty is an ordinary everyday thing.




3 thoughts on “Ordinary Everyday Deaths: The Patient Safety of People with Learning Difficulties

  1. Hi. Great blog. I thought though that only 1% (not 42%) of unexpected deaths of people with learning disabilities were investigated with a SIRI by Southern Health. Sorry if I am wrong/have misunderstood. Best wishes Liz


    • Thanks Liz – You are right in your second comment technically the 42% is the correct figure although it would be perfectly reasonable to argue that only 1% of deaths received an adequate level of investigation after all if an unexpected death doesn’t count as a serious incident what does and if Southern hadn’t challenged the findings as brutally as they did I suspect that the figures wouldn’t have included the IMAs many of which were of a very poor quality – btw skim read your 2nd comment and had written most of this before I realised and that I needn’t have bothered !! ; )


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