Giving people with learning difficulties a say in their hospital treatment is helping transform services. "When her 62-year-old brother went into Ealing hospital in west London at the end of last month for a routine operation, Amanda Burroughs was worried that staff would not take account of his learning disabilities.
She was both relieved and delighted to find that he was one of the first patients to take part in a scheme called Treat Me Right!, which aims to improve the way hospitals treat people with learning disabilities.
Burroughs's brother, who also has dementia, was asked to help draw up a document called About Me, which detailed his likes, dislikes, needs and wants.She also contributed to the document, which was hung at the bottom of his bed and made staff aware of issues such as the need to talk to him in straightforward language and to give him plenty of time to make decisions. She was so impressed with the scheme that she wrote a letter to hospital bosses and to Ealing MP Stephen Pound, stressing "its importance and the need to publicise it more widely".
Ealing-based Support for Living, a not-for-profit organisation that provides housing and social care for people with learning disabilities, proposed the project just over a year ago to help rectify the inadequacies in hospital care revealed by Mencap's Death by Indifference report, published in March 2007. The extent of those inadequacies was highlighted again last month when an investigation by the health and local government ombudsmen upheld complaints of maladministration against seven NHS trusts and two local authorities involved in six unrelated deaths between 2003 and 2005.
Nigel Turner, Support for Living's chief executive, says of the scheme, which is being funded for 15 months by Ealing primary care trust: "It isn't a kneejerk reaction to the ombudsmen's report. Hospital staff are used to bringing in a specialised piece of equipment to treat a disease. We want them to get used to bringing in a specialised approach to treating people with learning disabilities."
Elsa Grigg, project manager at Treat Me Right!, says the first step was to ask people with learning difficulties and their carers what they wanted to change. "The main thing that came up was communication, which can include really simple things such as extending an appointment to give someone more time to understand what's going on," she says.
New hospital information packs are being produced that will include photographs or symbols allowing a patient to point to a picture showing how much pain they are in or what foods they prefer. Some staff at Ealing Hospital NHS trust have already begun learning Makaton, a signed language for people with learning disabilities. From June, staff will receive more general training in dealing with people with learning disabilities.
The scheme is aimed at adult in-patients, but it may be extended to include outpatients, children and adults who have difficulty communicating because they have dementia or have had a stroke"
This article was written in response to Support for living's new intiative: Treat Me Right!
"Comes in response to local concerns and national campaigns regarding the treatment of people with special needs when they enter the hospital system. Often communication difficulties, poor staff training and lack of accessible information lead to tragic results in hospital."