A project in west London is aiming to improve NHS care of people with learning disabilities by raising awareness of vital issues among hospital professionals, writes Amy Taylor
It was Boxing Day seven years ago when Amanda Cresswell, who has learning disabilities, was rushed to hospital after she collapsed and stopped breathing. Unbeknown to Cresswell, having been given the all-clear by her GP a short time beforehand, she had non-Hodgkin’s lymphoma, and a tumour the size of a football which needed to be removed urgently.
Cresswell and her carers hoped she would receive urgent medical attention once in hospital, but instead she was left on a trolley for hours.
“I was scared,” she recalls. “Then they put me in the basement for four days. It was just me (there were no other patients placed there). I don’t know if it was because I have a learning disability or because it was busy. When they did put me on a ward it was the one for older people. They didn’t know how to communicate with me.”
Cresswell’s is not an isolated case. Mencap’s 2007 report, Death by Indifference, highlighted the cases of six people with learning disabilities who died because NHS care was inadequate.
resswell says she doesn’t want anybody else to have a similar experience and now works for a project to improve the care of people with learning disabilities at a west London hospital.
The Treat Me Right! project is run by learning disability supported housing and care provider Support for Living at Ealing Hospital. Keen to improve its service, the borough’s primary care trust provided the not-for-profit organisation with £70,000 to run the project for 18 months from last autumn.
Chief executive Nigel Turner says medical professionals must realise that, if people with learning disabilities are to have equal access to treatment, they need to be treated differently through personalised approaches and adaptations.
“In the medical profession in general there is a tendency to see the person as their condition but that’s more so for people with a learning disability,” he says. “Unless staff understand you as a person you won’t receive an adequate service.”
Communicating individual requirements to professionals can be difficult for people with learning disabilities, particularly in a fast-paced hospital environment. The project has created a short document called an “About Me” plan to tackle this.
Project manager Elsa Grigg works with clients before they go into hospital or soon after they arrive to draw up the plans which hold information to help staff to communicate better and individuals feel more comfortable. This can be anything from wanting to listen to an iPod at certain times to a request to be shown procedures visually before they are carried out, such as having your blood pressure taken.
Grigg recalls how a plan drawn up for a man who had autism and dementia greatly improved his experience and involved little extra work for hospital staff.
“The hospital moved his bed nearer the nurses’ workstation and communicated with him in a much more simplistic way,” Grigg says. “They also allocated someone to watch him because he was in danger of wandering off. It’s just simple things like that.”
The project also runs learning disability awareness training for hospital professionals, which Cresswell and Grigg run jointly. Cresswell’s story often has a stark effect on the trainees. Most staff have had little contact with people with a learning disability and it is a lack confidence rather than a lack of regard that hinders their practice.
“Yesterday during training, when we asked what a person with a learning disability was one comment was ‘people who aren’t quite normal’,” Grigg says.
In response to Mencap’s report, the government commissioned an independent inquiry into access to healthcare for people with learning disabilities. Published a year ago, it made a number of recommendations for the NHS after finding that this group of people received unequal treatment. Marianne Selby-Boothroyd, improvement and development director at Support for Living, says the project used the recommendations to create its content – and improvements are being made in areas where there are individuals driving change.
A further precipitant is a new Care Quality Commission performance indicator for acute and specialist trusts for 2009-10 on access to healthcare for people with a learning disability. This time, the indicator will not be included in the scored assessment for 2009-10 but trusts will be required to collect the information and report on it. Selby-Boothroyd is pleased but believes the indicator needs to count if the government is truly committed.
“We are giving them the benefit of the doubt that it is because it’s new but we would expect them to change that,” she says.
➔ More information on Support for Living
This article is published in the 23 July edition of Community Care under the headline “Try to understand my pain”