Health watchdog report on disability discrimination is a ‘missed opportunity’

Wednesday 12 October 2011

Learning disability charity Mencap has called a Parliamentary and Heath Service Ombudsman report a ‘missed opportunity’ to properly enforce disability law.

Learning disability charity Mencap has called a Parliamentary and Heath Service Ombudsman report a ‘missed opportunity’ to properly enforce disability law. 

The report[1] published today is about how the Ombudsman’s office approaches cases involving disability discrimination in the NHS and states the role of the Ombudsman is not to pass judgement on matters of disability discrimination law or to determine whether the law has been breached. The Ombudsman adds that this is a matter for the courts.

David Congdon, Mencap head of campaigns and policy, said: “We believe the Ombudsman has an important role in ensuring that health professionals respect the rights of people with a learning disability. This was a missed opportunity to send a clear message to all health professionals that poor standards of care for people with a learning disability will not be tolerated within the health service.

Since Mencap's Death by Indifference report was published a lot of positive steps have been taken within the health service. However if health professionals are not challenged to make reasonable adjustments and to stop discriminating against people with a learning disability,  poor care and treatment and avoidable deaths will continue unchecked.

It is for this reason that Mencap has taken the unprecedented step of challenging the ombudsman’s approach via judicial review.’’

The report published today follows the Six Lives report published two years ago by the Ombudsman.  The Six Lives report in turn responded to Mencap’s 2007 Death by Indifference report, which detailed the tragic deaths of six people with a learning disability.  Mencap believes that they died needlessly while in NHS care.

Mencap welcomed much of the Ombudsman’s original report into their deaths, which found unacceptable levels of care and highlighted a catalogue of neglect and ignorance.  However, the Six Lives report did not find service failure in all cases where health professionals had failed to act in regard to the Disability Discrimination Act.

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.”

Ends

For further information contact Nzinga Cotton on 020 7696 5603 or nzinga.cotton@mencap.org.uk or 07770 656 659 if calling out of hours.
 

Notes to editors

• 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

There are 1.5 million people with a learning disability in the UK. Mencap fights on their behalf, and on behalf of their carers and families, 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.