People still dying needlessly in NHS hospitals

Thursday 14 October 2010

People with a learning disability are still dying needlessly in NHS hospitals 18 months after receiving a warning from the Health Ombudsman to overhaul their practices and train staff properly, a Department of Health report revealed today.

The Six Lives progress report published today is in response to the Ombudsman report of the same name that was published 18 months ago. It criticised hospitals for failing to provide the proper level of care to people with a learning disability and highlighted an appalling catalogue of neglect and ignorance that led to the deaths of six people brought to light in learning disability charity Mencap's 2007 Death by Indifference report.

A further 14 deaths have been reported to learning disability charity Mencap since the Ombudsman's damning 2009 report with families alleging hospital blunders, poorly trained staff and indifference are to blame. With the NHS facing major reform, today's report also suggested funding of two major health programmes set up to prevent avoidable deaths of people with a learning disability, risked being cut.

Mark Goldring, Mencap's chief executive said:

"This report is a stark warning that too many parts of the NHS still don't understand how to treat people with a learning disability. If attitudes, training and clinical practices aren't overhauled across the board people will continue to die needlessly.

"Health professionals need to properly understand how to apply the Mental Capacity Act as too often decisions are not made in the best interest of the patient. Doctors should be trained to intervene early to treat people with a learning disability, rather than waiting.

"The report shows some examples of good practice in making reasonable adjustments. A prime example of this is annual health checks which are essential in picking up health problems in people with a learning disability early, especially those with profound disabilities who may not be able to communicate. However 60% of people with a learning disability are not getting them and more needs to be done.

"It is also essential that funding of the Confidential Inquiry and Public Health Observatory continues so that people with a learning disability do not keep dying needlessly. The failure by some hospitals to act reflects the deep-seated discrimination against people with a learning disability that still exists in the NHS."

Mencap is calling on all health trusts to sign up to and implement its nine-point Getting it right charter to end discrimination in the NHS and ensure people with a learning disability receive the same quality of care as the rest of the population.   Mencap is also asking the Health Ombudsman to publish a follow up report on NHS Trust's progress in 18 months time (2012).

Case study

Emma Kemp's death was investigated by the Health Ombudsman as part of the original Six Lives report.

Emma Kemp, 26, had a learning disability and was diagnosed with cancer. Her mother, Jane, was told that Emma had a 50% chance of survival with treatment, but the hospital staff were worried that it would be difficult to treat her because of her learning disability. Emma's doctors decided not to treat her, saying that she would not co-operate with treatment. Jane eventually agreed that palliative care would be appropriate. 

Jane told Mencap about the discrimination Emma faced: "Emma was a fun loving young woman who loved her life and all of the people in it. She was denied her chance of life by doctors who discriminated against her. One doctor actually said: ‘if she was a normal young woman we would not hesitate to treat her'. When I agreed that Emma should only receive palliative care treatment, I did so because I was then told that Emma only had a 10% chance of survival and that it would be cruel to treat her. I now know that this was not true, that I was misled into agreeing with the decision that cost my daughter her life."

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For more information or to request an interview with Jane Kemp or Mencap chief executive Mark Goldring please contact Michelle Fowler on 020 7696 5414 or 07770 656 659 if calling out of hours.

Notes to editors

• The Confidential Inquiry, being run by the Norah Fry Research Centre, is a detailed inquiry into the deaths of people with a learning disability to share lessons learnt to prevent unnecessary deaths in the future. http://www.bris.ac.uk/cipold/confidential-inquiry/

• The Learning Disabilities Public Health Observatory will use data and information to produce practical tools to support effective commissioning to improve the health and lives of people with learning disabilities. http://www.improvinghealthandlives.org.uk/about/ihal

• Mencap's Death by indifference report
  The report contained evidence that people with a learning disability were dying unnecessarily due to institutional discrimination in the NHS. Death by indifference contained six cases where people with a learning disability had died unnecessarily due to widespread ignorance and neglect within the NHS.
  

www.mencap.org.uk/deathbyindifference

• Getting it right charter - see the person, not the disability

Mencap is asking healthcare professionals to pledge to:

• Make sure that hospital passports are available and used
• Make sure that all of our staff understand and apply the principles of mental capacity laws
• Appoint a learning disability liaison nurse in our hospital/s
• Make sure every eligible person with a learning disability can have an annual health check
• Provide ongoing learning disability awareness training for all staff
• Listen to, respect and involve families and carers
• Provide practical support and information to families and carers
• Provide information that is accessible for people with a learning disability
• Display the Getting it Right principles for everyone to see

• About Mencap

Mencap supports the 1.5 million people with a learning disability in the UK and their families and carers. Mencap fights to change laws and improve services and access to education, employment and leisure facilities, supporting thousands of people with a learning disability to live their lives the way they want. We are also the largest service provider of services, information and advice for people with a learning disability across England, Northern Ireland and Wales.

• About learning disability

A learning disability is caused by the way the brain develops before, during or shortly after birth. It is always lifelong and affects someone's intellectual and social development. It used to be called mental handicap but this term is outdated and offensive. Learning disability is NOT a mental illness.

The term learning difficulty is often incorrectly used interchangeably with learning disability.

The term learning difficulty is often incorrectly used interchangeably with learning disability.