Working with Experts by Experience

“I feel I have made a real difference”

A group of people with learning difficulties have been using their skills and knowledge to help inspect registered care homes in the West Midlands.

Part of the team
Getting voice heard
The future of Experts by Experience

“I wanted to check to see if homes were up to standard” explains Steven Ellis, who was one of four people with learning difficulties who were asked to help inspect 45 registered care homes in Birmingham and Solihull in 2005 and 2006. The other three members of the team were Mandy Warner, Margaret Wyer and Nigel Smith. They were all called Experts by Experience, because living their lives with a learning difficulty makes them experts in their own right and a very valuable addition to the inspection team. Sandwell People First (now called Changing Our Lives) supported the Experts throughout the project.

Registered care homes are inspected regularly. Inspectors make both announced and unannounced visits to make sure that services are up to scratch and meeting the needs of the people who use them.

Alison Ridge was one of the inspectors who worked with the Experts by Experience. She was impressed by their approach, “the Experts looked at the services and asked ‘would I accept this in my life or for my friends?’ It was very personal for them, which added a lot of value to the inspection. Also in many cases, when the Experts spoke to people living in the homes, they were able to find out information and were told things that I would never have been told."

Part of the team

After knocking at the door and explaining to the manager that they were part of the inspection team, the Expert by Experience was shown around the home, often by some of the people who live there. The Expert asked a set of questions based on the Department of Health National Minimum Standards and spoke to at least two adults with learning difficulties in each home.

If any of the residents were unable to speak the Expert sat and observed. The Experts were accompanied by a supporter who made notes of their observations and was also someone for them to talk to about whether they thought the home was good or bad. The Experts’ opinions were then sent to the inspector who included them in the final report.

“I learnt to change the questions in different situations. I learnt that you could find out information about a person without having to talk to them” explains Margaret Wyer, who also felt that being an Expert had helped her to become more confident. Mandy Warner sums up her motivation for being involved as, “I wanted to make people’s lives better”. But there were some difficulties, such as when Experts felt frustrated that they had little power to change things, in Nigel Smith’s words, “I felt angry when I went into a bad home. I wanted to do something about it there and then but I couldn’t”.

Getting voices heard

“The Experts by Experience really did help to get the service users’ voices heard more clearly,” says Alison Ridge. “The staff who plan the residents care don’t have first hand experience of what that feels like, or of having a learning disability, but the Experts do and when they spoke directly to the staff and asked questions it was very powerful. They brought fresh eyes to the inspection and both their compliments and their criticisms carried extra weight”.

The Experts had many ideas about how the inspection system could be improved. They felt that if residents had a better understanding of their rights this would help them to have higher expectations of the type of service that they should receive. More contact between residents and self-advocacy groups, such as Sandwell People First, could help to bridge this gap in understanding.

The Experts also felt that the Department of Health National Minimum Standards need to be revised to focus more on the needs of the people receiving the care, rather than the service itself. They would like the CSCI to think about Experts by Experience having legal status in the inspection process. Overall the team of Experts were very pleased that their comments were valued in the inspection reports. As Margaret Wyer concludes, “I feel I have made a real difference”.

The future of Experts by Experience

• CSCI is aiming for between 5 and 10% of inspections carried out in 2006 and 2007 to include Experts by Experience.
• As part of its new Accessible Communications Policy CSCI will soon produce inspection report summaries for learning disability services in an easy read format.