Three vulnerable patients a day die due to lack of care

People with learning disabilities need specialist help to ensure vital warnings are not missed

A shortage of specialist nurses trained to care for people with learning disabilities is putting the lives of thousands of vulnerable people at risk, the leading charity Mencap has warned.

No NHS hospital in England has 24-hour learning disability (LD) nurse cover and more than 40 per cent of NHS trusts do not even employ a single LD nurse, according to Freedom of Information requests from the charity. NHS workforce figures show that there has been a 30 per cent cut in the number of LD nurses employed in the health service over the past five years.

The charity said that the absence of specialist nursing support was putting lives at risk. People with learning disabilities often find it difficult to communicate their condition, and Mencap said there had been numerous cases in which doctors had dismissed dangerous symptoms as merely an aspect of a patient's disability. The number of LD nurses employed in the English NHS has fallen from 5,700 in September 2009, to fewer than 4,000 in July this year – the latest month for which data exist.

Research commissioned by Mencap last year estimated that 1,200 people with learning disabilities are dying "needlessly" in the NHS each year, largely due to delays or problems in investigating illnesses.

In their role as go-between for patients, families and doctors, LD nurses can help speed up diagnoses, which in some cases can be the difference between life and death.

However, severe budget pressures on NHS hospitals have led managers to look for savings wherever possible, and Mencap has expressed concern that LD nurses are being viewed as expendable.

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Muhammed Yilmaz: ‘An LD nurse could have saved my brother’s life’ (Teri Pengilley)

"Through the work they can do, the awareness they can generate, learning disability nurses can, indirectly, save lives," said Dan Scorer, Mencap's head of policy. "We know about the hole in the NHS finances and a lot of trusts are in serious financial trouble. Our argument would be that the consequence of not investing in learning disability nurses are extremely serious."

One person who knows too well the true value of such nurses is Muhammed Yilmaz, 24, a cyber security analyst from north London, who lost his brother Gerald, 37, in July 2012. In the week before he died, Gerald, a gardener, whose disability meant he had the IQ of a seven-year-old, was sent home from London's Whittington Hospital twice, diagnosed with a migraine.

His parents told doctors that his behaviour had changed, and that he was not recognising people he knew, but their concerns were not acted upon until a third visit to hospital when doctors order a CT scan which revealed a brain abscess. After three operations in a week, Gerald died.The coroner said that earlier treatment could have saved his life.

"In those three days at Whittington we had no contact with an LD nurse," Mr Yilmaz said. "If an LD nurse was there, she would have been able to tell this was not Gerald's baseline [normal behaviour]. If an LD nurse is there they can act as a go-between and advise the doctor." The hospital has since acknowledged it failed Mr Yilmaz and has changed its procedures, offering new training to staff.

Jan Tregelles, chief executive of Mencap, has called for better training for NHS employees. In an open letter co-signed by representatives of the British Medical Association and the Royal College of Nursing, the charity also calls for 24-hour LD nurse cover across the NHS.

"Every year, 1,200 people with a learning disability are dying prematurely because the health system is not meeting their needs," they wrote. "This is three people a day. How many more lives have to be lost until every hospital has dedicated learning disability liaison nurses?"

Labour's shadow minister for public health, Luciana Berger, said that the fall in the number of LD nurses was "unacceptable". "These shortages are putting vulnerable people at unnecessary risk," she said. "Under David Cameron, the number of learning disability nurses has fallen. Labour will train and employ more of these specialists to ensure people with a learning disability get the specialist support they need."

The coalition Health minister Norman Lamb "strongly shared Mencap's view that the NHS has to change". He said: "We've commissioned more student places for learning disability nurses, and we are working to encourage more people to consider this as a career path."

Mencap's letter in full

Dear Sir.

We, the families who have lost our loved ones due to failings in the health system, concerned health professionals, and Mencap are calling for the Government to recognise the health inequalities faced by people with a learning disability. The Government must act now to stop this needless waste of life.

For ten years successive governments have been told by doctors, nurses, researchers, families and Mencap that steps could be taken to prevent these deaths. The presence of Learning Disability Liaison Nurses – health professionals trained to care for people with a learning disability – has been a key recommendation, yet we now know that almost half of acute NHS Trusts don’t employ any, with none offering 24 hour availability.

1,200 people with a learning disability are dying prematurely every year because the health system is not meeting their needs. This is 3 people a day. How many more lives have to be lost until every hospital has dedicated learning disability liaison nurses, available 24 hours a day, to care for people with a learning disability?

Death by indifference families:

  • Muhammed Yilmaz
  • Chas and Peggy Pearce
  • Mary Sharpe
  • Sue Rawlinson
  • Christine Papalabropoulos

Health professionals and organisations

  • Jan Tregelles, Chief Executive, Royal Mencap Society
  • Dr Peter Carter OBE MCIPD CCMI, Chief Executive and Secretary General, Royal College of Nursing                 
  • Professor Sheila the Baroness Hollins, Chair of the Board of Science, British Medical Association                                        
  • Helen Laverty, Professional Lead, Learning Disability Nursing University of Nottingham         
  • Vicky Raphael, Chair,  National Valuing Families Forum          
  • The Lord Rix Kt CBE DL, President of the Royal Mencap Society, and Co-Chair of the All Party Parliamentary Group on Learning Disability
  • The Rt Hon. the Lord Wigley, Vice President, Royal Mencap Society                
  • Professor Ruth Northway FRCN, Professor of Learning Disability Nursing, University of South Wales               
  • Dr Ashok Roy, Chair of the Intellectual Disability Faculty, Royal College of Psychiatrists

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