People with learning difficulties/disabilities join the inspectors

People with learning difficulties were recently involved in the inspection of registered care homes in the West Midlands. What lessons were learned from the experience? Nigel Smith and Frances Hasler report

“I wanted to help people get a better life; I wanted to check to see if homes were up to standard.”

Nigel Smith and Steve Ellis are members of Sandwell People First. They took part in the Experts by Experience project with the Birmingham office of the Commission for Social Care Inspection. The project was set up by Rachael Dodgson, a user involvement manager for CSCI.

It was one of eight projects around the country that looked at ways to involve people who use services in the work of CSCI.

This project was about supporting people with learning difficulties to help inspect registered care homes. The people with learning difficulties who led the project were called experts by experience. They were supported to work with inspectors in 45 registered care homes.

Two other experts by experience worked on the project with Smith and Ellis – Mandy Warner and Margaret Wyer, who were supported by two People First support workers.

Sandwell People First set out what it wanted to achieve in the project:

● To check that adults with learning difficulties had a good quality of life and to help make their lives better by working with the inspector.
● People with learning difficulties to be paid for doing this work.
● To encourage people living in care homes to speak up for themselves.
● To be recognised as experts in our own right and be valued members of the inspection team.

Before the visits, the experts by experience had three days’ training, including talking about what makes a good and bad care home. They prepared questions for the visit based on Sandwell People First’s quality of life standards.

They worked with CSCI inspectors to plan the visits. The inspectors gave the experts by experience some information about the home, such as the number of residents. But little else was shared in order to guarantee impartiality.

They talked to at least two adults with learning difficulties in each home. The supporter recorded precisely what the expert had been told. They also observed how staff interacted with residents. At the end of the visit they talked through with their supporter about what they thought about the home.

After the visit, the expert and the supporter typed a report that was sent to the inspector who included the expert’s comments in the official inspection report. Where possible this included direct quotes. Sometimes this caused a debate.

Smith compared one home to a prison because it had sections labelled Wing A, Wing B and so on. The project achieved the aims set out by Sandwell People First. People with learning difficulties led the project and were paid for their work.

Wyer said: “I loved being paid. I’d never had paid work before.”

The experts were recognised as valued members of the inspection team by the inspectors and managers of the homes they visited. They made positive changes in the lives of other adults with learning difficulties by reporting what they had been told by residents, what they had seen or what they had heard. Smith said: “I liked checking how other adults with learning difficulties live, to make sure they had good lives.”

It was a positive experience for the people living in the care homes, too. One woman said: “Thank you for sending someone who understands me.” The experts could see there was a difference between their quality of life and the quality of life of some of the people they visited. “It made me think how lucky I was that I had my independence,” said Smith.

The experts have gained skills, including, for example, listening skills. They now understand what makes a good home and what good support is.

Ellis said: “I learned to feed back to the manager of the home and the inspector what people had told me or what I thought.”

Wyer reported that she had become more confident. “I learned to change the questions in different situations. I learned that you could find out information about a person without having to talk to them.”

There were difficulties, too. Experts were frustrated by the limited role they had and by the fact that they lacked the power to change things. The experts knew they were dealing with the lives of real people and, if they went into a bad home, then they needed more support as it left them feeling down. “I felt angry when I went into a bad home. I wanted to do something about it there and then but I couldn’t,” said one.

They were critical of the national minimum standards, which are the basis for CSCI inspections. They thought their own quality of life standards were much higher.

Some of the homes housed more than 20 people, so they could not talk to all residents. The feeling was that they were not accustomed to seeing homes that large and they would have liked to have spoken to local commissioners about their experiences.

Where people did not use words to communicate, it had been difficult to speak to them directly and the experts found that, although they needed more time to get to know them, they were not given this time.

Sandwell People First drew up a list of improvements that could be made in the future. The group said: “If residents knew their rights they would have higher expectations. CSCI offices need to have good links with local selfadvocacy groups.”

After the pilot project, CSCI decided to extend the use of experts by experience to all parts of the country. They are working with organisations to help support the experts by experience.

Sandwell People First will be sharing its knowledge from the pilot, helping to train other people with learning difficulties to be experts. CSCI is also working with national organisations, including Help the Aged and Mind, to support experts by experience.

NIGEL SMITH is chair of Sandwell People First. He is also co-chair of the National Forum for Adults with Learning  Difficulties and sits on the task force. FRANCES HASLER is head of user and public involvement at the Commission for Social Care Inspection.

TRAINING AND LEARNING
The author has provided questions about this article to guide discussion in teams. These can be viewed at www.communitycare.co.uk/prtl and individuals’ learning from the discussion can be registered on a free, password-protected
training log held on the site. This is a service from Community Care for all GSCC-registered professionals.

ABSTRACT
This article describes the participation of people with learning difficulties as members of an inspection team. It shows a partnership between a self-advocacy organisation and a regulator, and explains how people who use services can play a key
part in monitoring and improving services.

FURTHER READING
● S Carr, Has Service User Participation Made a Difference to Social Care Services?, Scie, 2004
● Real Voices, Real Choices, Commission for Social Care Inspection, 2006
● M Turner, S Balloch, “Partnership between service users and statutory social services”, in Partnership Working: Policy and
Practice, ed S Balloch, M Taylor, Policy Press, 2001

FURTHER INFORMATION
● Experts by Experience 
● Sandwell People First

CONTACT THE AUTHOR
enquiries@csci.gsi.gov.uk

This article appeared in the 5th October issue of the magazine, on pages 34 & 35, under the headline Expert Inspectors