21 June 2010

Doctors say patients with a learning disability receive poorer care

Almost half of doctors (46%) and a third of nurses (37%) say that people with a learning disability receive a poorer standard of healthcare than the rest of the population, according to a survey⁽ⁱ⁾ published today by learning disability charity Mencap to launch its new campaign, Getting it right.

The charity is launching the campaign as part of Learning Disability Week 2010 (21-27 June). Mencap's Death by indifference⁽ⁱⁱ⁾ report in 2007 highlighted six cases of people with a learning disability who died unnecessarily in NHS hospitals. Since then the charity has received more accounts of tragic cases from families and carers. Mencap developed a charter with a number of the medical Royal Colleges which spells out the adjustments that healthcare professionals need to make to their working practices when treating someone with a learning disability. The charity now wants health trusts to sign up to its Getting it right charter⁽ⁱⁱⁱ⁾ to stop indifference and make these rights a reality for patients with a learning disability.

The survey of over 1,000 healthcare professionals also found that:

• almost half of doctors (45%) and a third of nurses (33%) also admitted that they had personally witnessed a patient with a learning disability being treated with neglect or a lack of dignity or receiving poor quality care.
• nearly four out of ten doctors (39%) and a third of nurses (34%) went as far as saying that people with a learning disability are discriminated against in the NHS.

By law, all healthcare professionals must ensure people with a learning disability have access to equal healthcare^(iv) by making reasonable adjustments if necessary. But today's survey results also reveal that:

• more than a third of health professionals (35%) have not been trained in how to make reasonable adjustments for patients with a learning disability, which can often mean the difference between life and death
• more than half of doctors (53%) and over two thirds of nurses (68%) said they needed specific guidelines on how care and treatment should be adjusted to meet the needs of those with a learning disability.

Mark Goldring, Mencap's chief executive, said: "Healthcare professionals have recognised they need more support to get it right when treating people with a learning disability. Mencap's Getting it right campaign sets out to ensure that ignorance and discrimination need never be the cause of death of someone with a learning disability.

"Our charter sets out a standard of practice and will make health trusts accountable to people with a learning disability, their families and carers. The fact that so many healthcare professionals recognise the gaps in their own training and the need for specific guidelines for treating people with a learning disability, shows the need for urgent action before more people suffer. We want hospitals and health trusts to sign up today."

Case study

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."

Everyone has a right to equal healthcare. Take action and help make it happen by signing up in support of the campaign at www.mencap.org.uk/gettingitright.

- ENDS -

For more information about Emma Kemp's case, interviews with other case studies and further information, please contact Amy Edmunds on 020 7696 6937 or 07770 656 659 if calling out of hours.

Notes to editors

• (i) ICM Research surveyed a sample of 1084 doctors and nurses online between 25.05.10 and 07.06.10

• (ii) In 2007, Mencap's Death by indifference report highlighted six tragic cases of people with a learning disability who died unnecessarily at the hands of the NHS. Mencap found from talking to families and individuals that these cases were not isolated, but a sign of a wider problem. Evidence pointed to ignorance and indifference by healthcare professionals towards the health needs of people with a learning disability.

• (iii) 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

• (iv) Disability Discrimination Act 2005 - reasonable adjustments can include allowing more time during consultations; understanding and using the patient's preferred communication method eg photo symbols; and using their hospital passports.

• About Getting it right

Getting it right is a campaign run by a group of organisations to improve healthcare for people with a learning disability. People with a learning disability experience poorer health and poorer healthcare than the general population. Mencap has worked in partnership with a number of organisations to produce a charter for healthcare professionals, to help them work towards better health, wellbeing and quality of life for people with a learning disability.

• 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.