Learning Disability Today
Supporting professionals working in learning disability and autism services

Mencap calls for National Learning Disability Mortality Review to be established

Jan Tregelles MencapMencap has renewed its call for a National Learning Disability Mortality Review to be established in the wake of the latest preventable death of a person with learning disabilities at an NHS hospital.

The call came following the HM Coroner highlighting failings made by staff at Basingstoke Hospital that contributed to the death of 22-year-old Elisha Langley, who had a severe learning disability and dysmorphic syndrome, required constant help and support to live her daily life and could not communicate verbally.

Elisha died in Basingstoke Hospital on December 23, 2012 of a brain abscess, after doctors had failed to arrange a CT scan that would have allowed them to diagnose and treat her. Her family believe that if doctors had listened and acted promptly them when they told them how unwell Elisha was, she may still be alive today.

Recording a narrative verdict, the HM Coroner highlighted key failings that could have resulted in a better outcome for Elisha, saying: “When an operation for removal of a subaceous cyst on her head was under consideration, it was not felt necessary for a preliminary scan to take place as would certainly have been indicated if it had been clear that the cyst may have been present since birth, and a neurological reference was not considered to be necessary either. Each of these courses of action would have been likely to identify that Elisha had a skull defect likely to cause complications during and beyond the operative process itself.

“In the post-operative period there was a failure to appreciate until very late on that infection in the wound area was not superficial but in fact leading to penetration of the skull and the creation of a significant abscess in the brain from which Elisha was unable to recover.”

Alun and Julie Langley, Elisha’s parents, said: “Elisha may not have been able to speak but, as we were then, we are still her voice today. Time and time again, every concern we raised was brushed aside with staggering arrogance. This verdict now shows just how legitimate our concerns were.

“Elisha was a defenceless, beautiful soul, an angel who brought happiness to so many lives. I often sit and wonder if your sons and daughters would have been subjected to the neglect and pain my daughter suffered? You will go home to your sons and daughters, but I won’t. My daughter paid for your mistakes with her life.”

Learning Disability Mortality Review

Mencap wants the government to set up a full National Learning Disability Mortality Review, which could help the NHS take the steps needed to address the fact that, according to research by the charity, 1,200 people with a learning disability, such as Elisha, die unnecessarily every year.

The establishment of such a body was recommended by last year’s Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) report, but the government did not decide to fund it when it published its response.

Over the past 7 years, Mencap’s Death by Indifference campaign has fought against the unequal healthcare and institutional discrimination that people with a learning disability often experience within the NHS.

Jan Tregelles, chief executive of Mencap, said: “Elisha’s death was a terrible tragedy. Sadly it mirrors many of the cases that we see with family members being ignored by health professionals, despite them being the ones who know their loved ones best. Losing someone you love is awful. Knowing it is easily preventable makes it even worse.

“This is a problem with a solution. Setting up a full National Learning Disability Mortality Review could stop the 1,200 avoidable deaths of children and adults with a learning disability every year, at a mere cost of £2,000 per life saved. It would allow health professionals to learn why vulnerable people are needlessly dying every single day.

“Our failure to act and reduce these deaths is a sad indictment of what we value in our society.”

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