Healthcare inquiry reveals 'discrimination, abuse and neglect'

Tuesday 29 July 2008

Mencap response to Healthcare for all: Report of the Independent Inquiry into access to healthcare for people with learning disabilities.

Dame Jo Williams, chief executive of learning disability charity, Mencap says:

"Mencap welcomes the Independent Inquiry report. It proves that people with a learning disability are being discriminated against in the NHS, which is leading to unnecessary pain and death.

"It is clear that there is a desperate need for mandatory learning disability training for all health care professionals, and for people with a learning disability and their families and carers to be at the centre of all decisions made surrounding their healthcare.

"The findings and recommendations will bring some comfort to the families in Mencap's Death by indifference report, who bravely told their stories to highlight the widespread discrimination and ignorance."

- ends -

Notes to editors

Contact Tara Rayment, Mencap press office, 020 7696 5414, tara.rayment@mencap.org.uk, for interview with:

- Mencap spokespeople

- Case studies - from Death by indifference and some new ones available.

Copies of Healthcare for all: Report of the Independent Inquiry into access to healthcare for people with learning disabilities

can be downloaded at www.iahpld.org.uk/

Background information

What was Mencap's Death by indifference report about?

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.

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. 

What did Death by indifference call for?

In Death by indifference, Mencap called for:

• Annual health checks for people with a learning disability - not as a suggestion of good practice, but a mandatory practice
• Training to be improved to enable all staff to better meet the needs of people with a learning disability.
• The duty of care owed to patients with a learning disability to be met by all health care staff.
• Effective monitoring of learning disability in all records, so inequalities can be identified at every level.
• Complaints procedures need to be effective, responsive and draw lessons, both for the sake of the complainant, but also ensure that learning takes place, and poor practice rooted out.
• The scale of this problem is national, but unknown. Despite attempts to tackle health inequalities, we still have a clear but un-quantified inequality in healthcare for people with a learning disability. Therefore, we really need the confidential inquiry into premature deaths of people with a learning disability.

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