“Being an expert by experience has made me feel differently about my own learning disability”

A group in Oxford is speaking up for people with a learning disability, autism or both by working as experts by experience, at care and treatment reviews (CTRs).

Members of the ‘My Life, My Choice’ group take part in CTRs for people with a learning disability, autism or both. These individuals may be at risk of going into a specialist learning disability or mental health hospital. They may already be there.

The experts by experience are able to help because they know what to look for as they have a learning disability themselves. Gina from ‘My Life, My Choice’ says: “We’re coming from the same point of view. We can ask ‘are you being looked after; can you choose who you live with?’ We check their medication. It’s important to know they feel they’re being looked after.”

Experts by experience often find that the person having a CTR can relate better to a person with a learning disability. Sean is an expert by experience. He says: We’re helping people speak up, because people in units often don’t know how to express themselves.”

After talking with the person, their family and the team which looks after them, the experts make recommendations. This could be anything from getting local teams to work better together, to making sure the person is occupied and fulfilled. Everyone comes back together after six months, which is the time for a standard CTR, to make sure the recommendations are being followed up.

When doing a review, Paul uses his own experience of being treated in hospital: “The dream is to get everybody back into the community, with the unit just as back up for emergencies.”

Paul says: “When I started I thought I was the only person with a learning disability. Now I’ve met loads of people who are the same. They trust us, and it’s made me feel differently about my own learning disability.”

Chris Alexander who is an inspections co-ordinator says: “There’s no typical CTR; you don’t know what you’re going to get. It’s about trying to find the best solution for that person on the day.”

For more information contact: chris@mylifemychoice.org.uk