People with learning disabilities die, on average, 16 years before their counterparts without a disability, and more than a third of these deaths are avoidable, a study has found. This scandal has to be addressed, and urgently.
It has been widely acknowledged for many years that people with learning disabilities suffer from healthcare inequalities, but a new report, the confidential inquiry into the premature deaths of people with learning disabilities (CIPOLD), outlines just how big those inequalities are. Mencap estimates that more than 1,200 people with learning disabilities die from avoidable causes each year.
As a reference point, that’s deaths on the same scale as the Mid-Staffordshire scandal. But, annually. Scandal is the right word for it.
However, while the findings of the CIPOLD report are shocking, they are not a surprise. Mencap has been highlighting and campaigning on healthcare inequalities for many years now, notably with its Death by indifference report in 2007 and its 2012 follow-up, 74 deaths and counting. When they were published it was noted that the findings of both reports represented the tip of an iceberg, and this report shows just how large that iceberg is.
The reasons why these deaths happen did not come as a surprise either: delays or problems in investigating, diagnosing and treating illnesses in people with learning disabilities, health and social care arrangements being “deficient” in a number of ways, and families and carers not being listened to were among the common issues identified in the report.
It all sounds very familiar, depressingly so, especially to anyone who has read either of the Mencap reports mentioned above.
Dr Pauline Heslop, the CIPOLD study's lead author at the Norah Fry Research Centre, said the findings “must serve as a wake-up call to all of us that action is urgently required.”
She’s right. But action has been urgently needed for years and little has happened. I doubt much will happen in response to this report although I hope – want – to be proved wrong.
So far, though, the Government’s response has been muted. Care Services Minister Norman Lamb issued a statement saying the findings were “unacceptable” – as you would expect – and that the report will feed into the work going on to address the issues identified in the Winterbourne View and Mid-Staffordshire scandals. But, as yet, there has been no indication of any other intended action.
So, what should be done? The CIPOLD report makes some very sensible recommendations, such as the need to identify people with learning disabilities in healthcare settings, and to record, implement and audit the provision of ‘reasonable adjustments’ to avoid their serious disadvantage. Implementing these changes would go a long way to addressing the inequalities people with learning disabilities face.
I also think specialist learning disability nursing needs to be given a higher priority, which is something the recommendations touch on. At a time when the number of people with learning disabilities – and with complex healthcare needs – is growing, it seems perverse that the number of learning disability nurses is falling.
They also need to be given a higher status. For instance, there is only one learning disability consultant nurse in the country – Jim Blair at St George’s Hospital in southwest London – who can rank with consultant doctors and have influence on care strategies. Hospitals around the country should look to Blair’s appointment as a model for improving disability care.
But whatever happens, action is needed, be it from central Government, hospitals and healthcare providers or the new bodies being created in the current NHS reforms. But what cannot be allowed to happen is for people to say how shocking this report is, but then to put it on a shelf and forget about it.