Public loses faith in NHS for failing people with a learning disability

mencap_logoShortage of NHS learning disability nursing puts thousands of lives at risk

  • 1,200 people with a learning disability die avoidably in the NHS every year
  • 42% of NHS Acute Trusts do not have a learning disability liaison nurse
  • 60% of Brits lose pride in the NHS for its poor treatment of people with a learning disability
  • Families who have lost loves ones with a learning disability and leading health organisations call for NHS to stop tragic loss of life

The way in which our health system is mistreating people with a learning disability has caused 60% of the British public to lose pride in the NHS. The lives of thousands of people with a learning disability are being unnecessarily put at risk by the NHS, with one of the main factors being a serious lack of learning disability awareness and training.

This lack of learning disability training and awareness amongst hospital staff can contribute to very poor health care for patients. Indeed, 1,200 people with a learning disability die avoidably in the NHS every year; and women with a learning disability die on average 20 years earlier, and men 13 years earlier, than the general population.

As part of Mencap’s Hear my voice general election campaign, the charity is calling for greater learning disability training for all hospital staff to put an end to widespread discrimination and tragic loss of life. Part of this is making sure learning disability liaison nurses are in place in all hospitals, to ensure people with a learning disability get the support they need from the professionals involved in their care.

Freedom of Information Requests sent to 165 NHS Acute Hospitals by Mencap revealed:

  • 42% of NHS Acute Trusts do not have a learning disability liaison nurse
  • On average, each Trust only has 30 hours of learning disability nursing cover out of 168 hours in the week
  • Only 49% of Trusts have a full time learning disability liaison nurse
  • No NHS Acute Hospital Trust has learning disability liaison nurse cover for 24-hours a day

Further to this, in a letter published today in The Independent on Sunday, families who have lost loved ones with a learning disability, concerned health professionals and leading health organisations – including the Royal College of Nursing and the British Medical Association – have expressed their dismay at the loss of thousands of lives each year and the continued inaction from successive governments.

When told about the discrimination and poor care that people with a learning disability receive in the NHS, 60% of 2,062 British adults surveyed by Populus said this made them less proud of the NHS. This is paired with a belief that people with a learning disability should have the same access as anyone else when it comes to healthcare.

Jan Tregelles, chief executive at Mencap, said:

“With winter fast approaching, we must ask the government how it plans to care for the most vulnerable individuals in our society during this time. In recent years, the NHS has struggled to cope with the pressures that winter brings, so we fear what this will mean for people with a learning disability and the quality of care they receive in the NHS.

“In order to tackle the unacceptable inequalities that people with a learning disability face in the NHS, greater learning disability training and awareness is fundamental. Hospital staff must no longer write-off someone’s illness as a consequence of their disability and they must start listening to what families have to say. People with a learning disability are losing their lives as a result of inaction. When is this ever acceptable?

“What’s more, we know that the right training and awareness is critical. Where professionals such as learning disability liaison nurses are in post, they have made a really positive difference to the experiences and health outcomes of people with a learning disability.

“The Government must take action to ensure that people with a learning disability get the high quality healthcare they need and put an end to this scandal of avoidable deaths. No more excuses – people with a learning disability and their families deserve better.”

Mencap’s Hear my voice campaign gives people with a learning disability, their families and supporters the chance to tell politicians about the issues that matter most to them, and on which they want to see the next government act. The campaign has given rise to a Manifesto, where making sure people with a learning disability are given quality healthcare is a priority. The Manifesto calls on the next government to work with the NHS to end the scandal of avoidable deaths.

The letter published in The Independent on Sunday today was instigated by Muhammed Yilmaz, whose 37-year-old brother Gerald died avoidably within the NHS in 2012. Muhammed said:

“When my brother Gerald became ill, the doctors didn’t listen to my family. They diagnosed Gerald with an ear infection, and then a migraine, but we knew that there was more to Gerald’s illness. So much time was wasted by doctors dismissing Gerald’s illness as something to do with his disability that by the time they discovered Gerald had a brain abscess it was too late.

“We had no dealings with a learning disability liaison nurse when we lost Gerald. I feel it would have helped a huge amount. Having a learning disability liaison nurse supporting us would have meant that the doctors would have understood Gerald and it would have helped ensure that the necessary steps were taken to prevent the tragic waste of my brother’s life.

“We want the NHS to care for people with a learning disability like they care for anyone else, and we do not want anyone to suffer like Gerald did. Every day that we wait for this to happen is another day when somebody else will lose someone they love.”

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. http://www.mencap.org.uk/  For advice and information about learning disability and Mencap services in your area, contact Mencap Direct on 0808 808 1111 (9am-5pm, Monday-Friday) or email help@mencap.org.uk

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