“How many more people have to die before the government acts?”

mencap_logoNarrative verdict given after avoidable death of Basingstoke girl Elisha Langley, who had a severe learning disability and dysmorphic syndrome

Elisha Langley had a severe learning disability and dysmorphic syndrome, required constant help and support to live her daily life and could not communicate verbally. She died in Basingstoke Hospital on 23 December 2012 of a brain abscess at just 22 years old, 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.

Learning disability charity Mencap is calling on the government to set up a full National Learning Disability Mortality Review, which could help the NHS take the steps needed to address the shocking fact that 1,200 people with a learning disability die unnecessarily every year.

At yesterday morning’s narrative verdict, the HM Coroner highlighted key failings which could have resulted in a better outcome for Elisha.

The HM Coroner gave the following Inquest Determination yesterday morning:

“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.”

Over the past seven years, Mencap’s Death by Indifference campaign has fought tirelessly against the unequal healthcare and institutional discrimination that people with a learning disability often experience within the NHS. Last year, research commissioned by the charity revealed that over 1,200 people with a learning disability die needlessly in the NHS every year.

Jan Tregelles, chief executive of Mencap, said on yesterday’s verdict:

“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. Despite this recommendation being made by the Confidential Inquiry one year ago, the government has still not fully funded this.

“By the end of today a further three people with a learning disability will have died in the NHS. Our failure to act and reduce these deaths is a sad indictment of what we value in our society.”

About Mencap

There are 1.4 million people with a learning disability in the UK. Mencap works to support people with a learning disability, their families and carers by fighting to change laws, improve services and access to education, employment and leisure facilities. Mencap supports thousands of people with a learning disability to live their lives the way they want. www.mencap.org.uk 

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