Institutional discrimination by NHS causing unnecessary deaths of people with a learning disability
Mar 23, 2007 - 2:49:09 AM

Leading learning disability charity, Mencap, is calling for an independent inquiry into six deaths. The charity believes people with a learning disability have died unnecessarily due to institutional discrimination within NHS care. The cases are set out in Death by indifference, published by Mencap today (12 March 2007). Mencap says the deaths are a result of widespread ignorance and indifference within the NHS.

•Martin, aged 43, went without food for 26 days whilst he was in hospital following a stroke. This left him too weak to undergo surgery. Martin died on 21 December 2005.

•Doctors told Emma, aged 26, that she had a 50:50 chance of survival, but decided not to treat her as they believed she would not cooperate with treatment.

Emma died of cancer on 25 July 2004.

•Mark, aged 30, died eight and a half weeks after being admitted to hospital with a broken leg (femur). He was clearly distressed and in pain, but he had to wait three days to see the pain team.

Mark died on 29 August 2003.

Dame Jo Williams, Mencap’s chief executive, said: “We are deeply disturbed that three years on from Mencap’s Treat me right! report which exposed inequalities within the NHS, people with a learning disability continue to receive worse healthcare than those without a disability. Despite government recognition of the inequalities experienced by people with a learning disability within NHS care , there has been no commitment to tackle them. It is an outrage that the solutions to this problem have long been recognised, and yet action has not been taken.

“Mencap is calling for an urgent independent inquiry into the six deaths outlined in Death by indifference. We want the underlying bad practice, which we believe is a result of poorly designed systems, policies and procedures within the NHS, to be identified and acted upon. If action is not taken to eliminate institutional discrimination from our health services, people with a learning disability will continue to die unnecessarily.”

Mencap is calling for an independent inquiry into the six deaths in the report - An independent inquiry, which investigates all six deaths together rather than individually, will uncover underlying poor practice behind the deaths. This will show what lessons can be learnt to stop such tragedies happening again. It is also asking for a confirmation that the long promised confidential inquiry into premature deaths of people with a learning disability will be carried out - Only the confidential inquiry will reveal the number of people with a learning disability dying unnecessarily, and the scale of the problem the NHS must address. It has called for major improvements to the investigation of complaints against the health service - The current complaints system is lengthy and complex. Families want to find out how their loved one died, and whether that death was avoidable.

Allan, father of Mark, who died in August 2003, said: “Mark was the centre of our lives and gave us such joy. I believe that if my son had not had a learning disability, he would still be with us today. The discrimination and indifference my family faced was shocking. The medical staff had such poor understanding of Mark’s needs. Our family will never recover from having him ripped from us so suddenly. Lessons must be learnt from my son’s death, so that nobody has to go through the torture of losing a loved one as a result of discrimination.”

The new report follows Mencap’s 2004 Treat me right! report which exposed the unequal healthcare that people with a learning disability often receive from healthcare professionals.

In 2001 Valuing People acknowledged that ‘health outcomes for people with learning disabilities fall short when compared with outcomes for the non-disabled population’, and identified solutions – including the need for a confidential inquiry in to premature deaths, annual health checks and staff training. The White Paper ‘Our health, Our care, Our say’ admitted that people with learning disabilities face inequalities and that ‘the NHS has historically not served such people well’. However, nearly six years after the introduction of Valuing People (2001), Mencap says no action has been taken.

Recent cases of ‘institutional abuse’ found at NHS primary care trusts in Cornwall and Sutton and Merton , which included physical and sexual abuse, serve as further evidence that discriminatory practices still exist within the NHS. In September 2006 the Disability Rights Commission (DRC) conducted a formal investigation into physical health inequalities experienced by people with learning disabilities . The investigation showed that people with a learning disability are less likely to receive the healthcare they need.

The Royal College of Psychiatrists strongly supports the recommendations of MENCAP’s report, Death By Indifference, which raises questions about the standards of care from professionals in the National Health Service.

“The tragic stories in this report about neglect of people with learning disabilities who were physically ill is of deep concern to the College,” said Dr. Roger Banks, Vice-President.

“We are in total support of the recommendations on the need to educate health professionals, and to listen carefully to the views of families and carers.

“The College is very aware, through its members working in this area and through research, of the health needs of people with learning disabilities, the higher rates of morbidity and mortality in this population, and the difficulties often experienced in gaining access to appropriate assessment and treatment.

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