We're failing people with learning disabilities

By Pauline Heslop, University of Bristol

People with learning disabilities die significantly younger in England and Wales than people without learning disabilities. Men with learning disabilities die 13 years earlier on average and 20 years earlier for women compared to the general population. And people with learning disabilities are two and a half times more likely to die before the age of 50.

Those were the findings of a Confidential Inquiry, set up to review the sequence of events leading to the deaths of 247 adults and children who had learning disabilities, and which reported its findings this year. The research team, which I led, also reviewed the deaths of a comparator group of 58 people without learning disabilities who died at a similar age and of a similar cause of death.

People with learning disabilities are 2.5 times more likely to die before the age of 50

Scaled up across England and Wales, the Learning Disability Observatory estimates this to be more than 1200 premature deaths a year.

In 2007, a Mencap report into the deaths of six people who died while in NHS care exposed “institutional discrimination” against people with learning disabilities. While the situation has improved since the 1990s, in 2013 this discrepancy is still much too high.

Avoidable causes

Avoidable causes of death are those that could be prevented by public health interventions (such as stop smoking campaigns or better road safety) or could have been avoided by good quality healthcare. Almost half of the deaths of people with learning disabilities were avoidable.

While the proportion of deaths that could have been prevented by public health interventions was the same for people with learning disabilities as for the general population, what is most shocking is that over a third of them might have been avoided by good quality healthcare – three times the proportion in the general population.

Just one case involved James*, who was taken to A&E after he collapsed with bleeding from his nose and mouth. Hospital staff were convinced he had only had a seizure despite his family saying they hadn’t seen this happen. But an MRI scan later showed a haemorrhage. His family said that he had been in pain from 7am to 5pm because they hadn’t been believed.

Good quality healthcare might have prevented the deaths of hundreds of people with learning disabilities

Another case involved Rachel*, who developed a cough that gradually got worse. A GP prescribed antibiotics but despite further requests for help, her mother was told Rachel would be better by Sunday. By then her condition had worsened. She was taken to hospital where she still didn’t receive appropriate care. She died of aspiration pneumonia.

While the Confidential Inquiry didn’t use the terms “indifference” or “institutional discrimination”, significantly more people with learning disabilities experience difficulties in having their illnesses diagnosed and treated. The inquiry found all aspects of the provision and co-ordination of care for people with learning disabilities was worse than the group without learning disabilities that they were compared with.

In addition, families of people with learning disabilities more commonly felt that professionals didn’t listen to them. In short, the quality and effectiveness of health and social care given to people with learning disabilities is deficient in a number of ways, and a contributory factor in some deaths.

* Not their real names

Devastating findings but what now?

The Department of Health (DH) recently published an official response to these findings and the issue was debated in the House of Lords.

I welcomed the DH’s response, but given the seriousness of the problem and the issues it raises, we need more immediate action. People with learning disabilities are dying from causes that could be avoided by good quality healthcare – an issue that must be tackled with urgency. But urgency of action appears to be lacking in the DH’s response. It has also been criticised for its lack of decisiveness and clarity.

The reorganisation of the healthcare system in April 2013 means many previous responsibilities have now shifted to NHS England and Public Health England, which are still finding their feet.

NHS England announced the appointment of Dominic Stowie as Clinical Director for Learning Disabilities but we will have to wait and see whether he proves the champion for people with learning disabilities that we so desperately need. Otherwise, they will remain as a non-priority and in danger of becoming nobody’s responsibility.

Another reason for the lukewarm response from the DH may be because of premature mortality fatigue. We have recently been bombarded with reports of poor NHS care resulting in avoidable deaths of people in particular hospital trusts, in certain patient groups, and as a result of the actions or inaction of professional groups.

People with learning disabilities should expect no less and receive no less a service than anyone else

All of this has contributed to weakening the impact of what this means to individuals and their families.

People with learning disabilities are more vulnerable than other patient groups for a number of reasons, and without a strong and effective voice to demand the provision of good quality care they are in danger of being overlooked in the “pecking order” of different patient groups known to be at risk of premature mortality.

The principles of the NHS are familiar to us all. We expect it to be free at the point of delivery and available to everyone based on need. People with learning disabilities should expect no less and receive no less a service than anyone else.

Pauline Heslop received funding from the Department of Health in England to conduct the Confidential Inquiry into premature deaths of people with learning disabilities.

This article was originally published at The Conversation.

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