Leading health bodies unite to stop discrimination against people with a learning disability in NHS

Thursday 11 December 2008

Leading health bodies, including the Royal College of Nursing and the Royal Society of Medicine, have joined forces with Mencap to produce a best practice guide for health professionals on improving healthcare for people with a learning disability. 

Getting it right, published today (11 December), is part of the health organisations' support for Mencap's campaign to stop discrimination against people with a learning disability in NHS care. An interactive website accompanies the guide - www.mencap.org.uk/gettingitright

The health bodies, that represent over one million health professionals in the UK, came together in response to the publication of Mencap's Death by indifference report. In the report, Mencap exposed the shocking deaths of six people with a learning disability who had died unnecessarily in NHS care.   

Mark Goldring, chief executive of Mencap, the UK's leading learning disability charity, says: "Mencap's report, Death by indifference, and Sir Jonathan Michael's independent inquiry¹ proved that people with a learning disability receive poorer healthcare than the general population and in some cases experience unnecessary pain and death.

"Mencap welcomes the support of the organisations involved and their recognition that something needs to be done. We hope that all health professionals use this practical resource to improve the level of healthcare given to people with a learning disability."

Jim Blair, Chair of the Getting it right group representing the Royal College of Nursing and Royal Society of Medicine, says: "It is everybody's business to provide equitable care and treatment for people with learning disabilities in the Acute Care sector. Getting it right will alert health professionals of all levels - from the receptionist to the most senior clinician - to their responsibility to ensure people with a learning disability receive the best possible treatment."

Martin Bollard, Vice Chair of the Getting it right group representing the Royal College of General Practitioners, comments:  "The Getting it right guide represents what can be achieved when different health bodies collaborate effectively on behalf of vulnerable members of society. With the continued efforts of the groups who have developed this guide, it is hoped that the future risk of fatalities and discrimination against people with learning disabilities within mainstream healthcare can be reduced."

Dr. Peter Carter, Chief Executive and General Secretary of the Royal College of Nursing (RCN), said: "The RCN is a strong supporter of the work that Mencap is doing to support people with learning disabilities, their families and carers. This publication is an important contribution and acts as a key reminder for all stakeholders. It will be seen by RCN members as a very helpful resource."

For more information and to download the guidance, visit www.mencap.org.uk/gettingitright

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Notes to editors

¹Healthcare for all: Report of the Independent Inquiry into access to healthcare for people with learning disabilities can be downloaded at www.iahpld.org.uk/

Organisations involved with Getting it right

- Royal College of Nursing

- Royal Society of Medicine

- Royal College of General Practitioners

- Royal College of Psychiatrists

- Royal College of Occupational Therapists

- Royal College of Speech and Language Therapists

- Nursing and Midwifery Council

- Standing Commission on Carers

- Commission for equality and human rights

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

What were the six case studies in the report?

Martin, aged 43, went without food for 26 days whilst he was in hospital following a stroke. By the time staff realised what was happening, he was too weak to be helped. Martin died on 21 December 2005. He had a severe learning disability and no speech.

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. She had a severe learning disability, which meant that she sometimes exhibited challenging behaviour and had difficulty in communicating how she felt when she was upset or scared. 

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, screaming and banging his head, but he had to wait three days to see the pain team.  Mark died on 29 August 2003. 

Ted, aged 61, was discharged three weeks after being admitted to hospital for a minor operation, despite his condition having been assessed as 'concerning' because staff didn't want to meet his extra needs. He collapsed and died the following day on 27 May 2004. He had a severe learning disability and had virtually no speech. 

A hospice consultant recommended that 20 year old Tom's pain was investigated by a gastroenterologist over a year before he died. No action was taken until it was far too late. Tom's expressions of pain weren't listened to and he died on 25 May 2004. He had profound and multiple learning disabilities. 

Warren, aged 30, died following perforation of the appendix. His mother and father repeatedly asked whether Warren had appendicitis or a blocked bowel when doctors visited Warren. They were told Warren had a virus. Warren died on 25 September 2004. He had a severe learning disability and very little speech, but he could make himself understood to his family. 

Mencap

• Mencap works with people with a learning disability and their families and carers.
• 1.5 million people in the UK have a learning disability.
• A learning disability is caused by the way the brain develops before, during or shortly after birth. It is always lifelong.
• Learning disability affects someone's intellectual and social development all their life. People with a learning disability find it harder than others to learn, understand and communicate.
• People with a learning disability don't get an equal chance in life. Mencap fights to change laws and services and to provide better access to education, employment and leisure facilities, supporting thousands of people with a learning disability to live their lives the way they want.
• It is not a mental illness and should not be confused with mental health issues. It is not dyslexia or aspergers syndrome.
• It used to be called mental handicap but we don't use this term anymore because most people with a learning disability find it offensive.
• For information about learning disability issues please call the Learning Disability Helpline (England) on 0808 808 1111 or visit www.askmencap.info
• For online press information, go to www.mencap.org.uk/press