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People with learning disabilities continue to be failed

The long-awaited publication of the Learning Disabilities Mortality Annual Report last week only served to tell us what we already know: people with learning disabilities keep being failed by the NHS. Every year the Healthcare Quality Improvement Partnership publishes a report which reviews the process for the deaths of people with learning difficulties.

This year’s report told us that 1,311 cases involving a learning disability were passed to NHS England between July 2016 and November 2017 and only 103 (8%) have been reviewed so far.

It finds that in 13 cases a patient’s health had been “adversely affected” by factors such as:

  • Delays
  • Gaps in service provision
  • Organisational dysfunction
  • Neglect or abuse.

What exactly does the report mean by “adversely affected”?

The term is not at all helpful as it gives no insight into the extent of that adverse effect. However, in my experience, an “adverse effect” is typically a death which has been preceded by a prolonged period of distressing symptoms and suffering.

What are the recommendations set out by the report?

The report makes 189 recommendations highlighting:

  • The need for better communication between different agencies
  • Awareness of the needs of people with learning disabilities
  • Understanding and application of the Mental Health Act.

Understanding where things went wrong is of course integral to improving care, but I think we are all pretty clear now as to where the failings lie.

We know what the lessons are, what we need now is the how to prevent the same failings from happening again and again? How do we set about improving care of those with learning disabilities?

NHS England is proposing to spend another £1.4 million on completing the outstanding reviews so that “lessons can be learned.” The outstanding reviews should be completed, that much is owed to the families but I cannot help but ask: How many more deaths and subsequent reviews of the same do we need to tell us what we already know?

Dr Sara Ryan, mother of 18-year-old Connor Sparrowhawk who drowned in NHS care in 2013, said in response to the report: “Certain people simply don’t count – you can’t dress it up as anything else.

I couldn’t agree more, I’ve seen this time and time again in my work.

What needs to change as a result of the findings?

To really effect change we need a two-pronged approach:

  1. We must educate and train all those that care for people with learning disabilities and all those that have the responsibility to oversee that care, to ensure that they know how to care for this group of extremely vulnerable people to ensure that their needs are met.
  2. We must also educate the public. People with learning disabilities are human beings with the same rights as everyone else and must be seen and heard. Their needs count just as much as a person who doesn’t have a learning disability.

Only then will we stop hearing the same platitudes.