Co-national director for learning disabilities Nicola Smith sees her task as keeping the NHS on its toes and moving people out of residential care. Maria Ahmed reports
It is more than two months since Nicola Smith started work as co-national director for learning disabilities, the first government-level post designated for a service user.
Now, following a shocking report by the Healthcare Commission and Commission for Social Care Inspection that revealed widespread abuse of people with learning difficulties in Cornwall (news, page 6, 13 July), Smith’s role could not be more timely.
She is currently drawing up a two-year workplan that touches on many themes highlighted by the report.
Smith believes that abuse of people with learning difficulties is “common”, and wants to see greater effort to prevent it.
But she says it is not always the fault of staff. “In many cases they haven’t had training and don’t understand what to do. We must make sure awareness is out there.”
Communication with service users must improve, especially with people who cannot communicate verbally, Smith says.
“The behaviour of many people with learning difficulties – particularly those with severe learning difficulties – is labelled as inappropriate by society, but they need to be understood.”
Smith cites the case of a man she recently met who had severe learning difficulties. “Staff said his behaviour was challenging when in fact he was in pain because of his gums, but he couldn’t express this verbally. When it was finally understood that he was in pain and he was treated, he was fine and the behaviour stopped,” she says.
One of Smith’s first priorities is moving an estimated 3,000 people with learning difficulties from NHS residential care “campuses” – where they are classed as patients – into the community.
This was first highlighted as a key target last year by the government’s Valuing People Support Team, following the closure of most long-stay hospitals.
Smith is due to visit her first campus with the Healthcare Commission this week. “I want to keep the NHS on its toes. People with learning difficulties should be held for shorter times in NHS care. They should not be shut away,” she says.
She adds people leaving NHS campuses must have access to advocacy and care plans “written by them and for them”.
Smith, who has a long history of involvement in the self-advocacy movement, wants advocacy services to be available to help people make decisions about how they will live in the community.
“Everyone should have an advocate – someone to help, someone to trust. Advocates must go in when NHS campuses close to help people to make complaints and provide information in a format people can understand.”
Smith says insufficient resources and society’s attitudes provide barriers to the closure of NHS campuses.
“We need to see people with learning difficulties as citizens in their own right. There are people who have been told from birth that they cannot do anything, but they are now living independently.”
Smith believes her job is setting a precedent for the way people with learning difficulties should be treated in the future. “People like me can just spread the word. Other organisations should have a post like mine. I left school with no qualifications, but my work proves I am able to communicate in a way that makes people listen.”
Nicola Smith, 43, from West Sussex, was appointed co-national director for learning disabilities in May, working one day a week in a post she shares with Rob Greig. She founded a self-advocacy organisation 10 years ago and has also worked as a trainer, promoting awareness of learning difficulties.
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