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Death by indifference

12 March 2007

The human rights department at law firm Leigh Day has represented a number of learning disabled people who have received inadequate or substandard care from the NHS or social services.  Frances Swaine, partner in the human rights department, welcomes the publication of a report by Mencap entitled, Death by indifference, a follow-up report to its Treat me right! report.

Death by indifference

Today's report reveals a shocking picture of institutional discrimination in the NHS against people with severe learning disabilities, particularly where there is the added complication of limited communication skills.  The stories of six people are presented who are all believed to have died unnecessarily because of the fatal lack of understanding by healthcare professionals of their needs.

The Disability Rights Commission published a report in 2006 entitled, Equal treatment: closing the gap which showed that people with a learning disability received fewer screening tests and fewer health investigations, and that they are far less likely to get the healthcare they need at primary care level.  Unfortunately this situation persists despite reports of disgracefully poor treatment by Mencap and others.

Mencap says that the circumstances in which these six people died show 'underlying bad practice'.  Some of the cases are still being investigated by the Healthcare Commission, the NHS inspectorate.  They include the stories of:
  • Ted -  died from aspiration pneumonia the day after he was discharged from hospital after an operation for urine retention.  His GP had said there was no need for him to return to hospital.
  • Warren - died from peritonitis.  His parents understood that he was in pain but his hospital and GP showed no concern.
  • Tom - died after suffering an ulcerated oesophagus.  His parents realised that he was in pain as he showed signs of distress such as gouging his head.  Advice recommended by a gastroenterologist had not been acted on for more than a year.
  • Martin - suffered a stroke and was admitted to hospital, he had no speech.  He then went without food for 26 days as he kept pulling out his drip, no alternative was offered.
  • Emma - was diagnosed with cancer in 2004.  Doctors chose not to treat her, saying she was uncooperative.  Despite legal action by her mother which resulted in forcing treatment, her condition  had deteriorated too far to save her life.
  • Mark - died of bronchopneumonia after falling and breaking his leg.  After an operation on his leg Mark lost 40% of his blood.  He was readmitted to hospital and had to wait three days to see the pain team, his condition deteriorated rapidly culminating in a cardiac arrest and multi-organ failure.

Many families have reported such remarks as:
"If she had been a normal young woman we would not hesitate to treat her"
"Wouldn't it be better everyone if we just let him go?"
"In my opinion there is nothing wrong with him and I am not usually wrong. It's just the way he is."

Learning disabled rights

Leigh Day has supported and is working with Mencap in its campaign to raise the standards of care offered to learning disabled adults who have communication problems.  Frances Swaine comments:
"It is vital that effective protocols and policies are put in place to protect the most vulnerable members of our society.  Once past childhood adults with learning disabilities have to rely almost entirely on the support of their families. Everyone who becomes ill in this country is entitled to high standards of care from the NHS, something that tragically has not happened in the cases of the people highlighted in this report."  Frances is pleased that the Secretary of State for Health, Patricia Hewitt, has immediately agreed to an independent inquiry following the publication of this report.

For further information please contact Frances Swaine on 020 76550 1200.

Information was correct at time of publishing. See terms and conditions for further details.

Information was correct at time of publishing. See terms and conditions for further details.

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