Response to Court order for cancer patient with a learning disability

Wednesday 26 May 2010

David Congdon, Mencap's head of campaigns and policy said:

"We believe that people with a learning disability have the same right to treatment or to refuse treatment as anyone else. However, in this case, where the patient clearly lacks the mental capacity to make the decision herself, it is right for the courts to decide based on her best interests."

"This is an unusual case and we are very encouraged that health professionals have taken the right steps to ensure the patient receives the treatment she needs. All too often people with a learning disability are denied treatment based on assumptions of their quality of life.  Mencap's Death by indifference report 2007 highlighted a similar case of Emma Kemp, who had cancer and was denied treatment because she would allegedly have found it difficult to cope."

-ENDS-

For more information and to arrange an interview please contact the Mencap media team on 020 7696 5414. Out of hours please call 07770 656 659.

Notes to editors

• 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 one of the largest providers of services, information and advice for people with a learning disability across England, Northern Ireland and Wales. See http://www.mencap.org.uk/ for more information.

• 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 It used to be called mental handicap but this term is outdated and offensive.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.

Emma Kemp's story

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. 

• Disability Discrimination Act (2005)

The DDA 2005 requires public services and authorities to meet the needs of disabled employees and service users. They must make reasonable adjustments to ensure that each person has the same opportunity for health whether they have a disability or not.

• Mental Capacity Act (2005) 

The Mental Capacity Act came into force in 2007 and enshrines in law the rights of those who are deemed to lack the capacity to make their own decisions, as well as those who can make their own decisions. The Act sets out how capacity should be determined by the decision maker.

Decisions made on someone else's behalf must be made in their best interests. ("Best interests" does not just mean medical best interests, but concerns the overall wellbeing of the person. Such decisions include any past or present wishes or choices the person has expressed.)

Before making a decision or doing something on someone else's behalf, those involved must consider whether the same outcome could be achieved in a less restrictive way.

Best interests decisions relating to life-sustaining treatment must not be motivated by the desire to bring about the person's death.

Mencap believes that people with a learning disability deserve the same access to health treatment as everybody else. It is wrong that people should be denied treatment on the basis that they may lack the capacity to consent to it, especially if the treatment involved is of a life-saving nature.