User empowerment 10

Expert scrutiny

(this article appeared in Openmind 105 September/October 2000)

When a group of service users in Camden were commissioned to assess the quality of three local voluntary support services, they found the process both rewarding and challenging

The Camden user monitoring group, Loren Buckley, Joe Daly, Diana Foley, Leo McLaughlin, Omar Rey, Nicky Roberts and Hugh Sturrock, met regularly to devise an interview schedule, receive training and support to carry out the interviews, and then to contribute to the resulting report. Twenty-nine current and seven past users of the three voluntary services were interviewed.

The group: 'Right from the start we found we all had something in common. Our shared experience as users and ex-users of mental health services helped us to relate to and understand each other. The fact that we were on the same wavelength meant that the group meetings very quickly became lively social occasions. Everybody who took part understood the issues relating to the project, and because the training and support meetings took place in a relaxed atmosphere, we all felt confident in expressing our own individual insights and opinions. It was through this method of debate and discussion that the questionnaire was developed.

Some of us had already been involved in developing surveys for statutory services. We were interested to see whether it would make a difference having service users involved in both devising the questions and carrying out the interviews. For example, as service users ourselves, we felt it was very important to include questions about the emotional support provided to the interviewees by their community support workers. Service users are often isolated, and we felt that the interviewees' emotional wellbeing might be dramatically improved by meaningful friendships with these workers.
At the outset of the project we were all told that we were to be paid. This was a real boost - our often negative experience of life with a mental illness was suddenly being valued as something important which could be used for a positive outcome and could possibly benefit somebody else.

Carrying out the interviews was for all of us both challenging and rewarding. Each interview was unique, and varied in length from 30 minutes to 4 hours. Obviously interview techniques varied. Some of us were tortoises and a few of us were hares!

The length of the interviews often depended on how much each interviewee wished to elaborate on his or her answers. It was easy to empathise with them; we could personally relate to their life problems and we made it known to them that we understood some of the issues they faced. This is why some of interviews were lengthy. For some, the interview became one of their all-too-few social events.

As mental health service users ourselves we were able to empathise with the interviewees in so many ways, and we felt this affected how they replied to the questions. We feel that we were trusted and that the interviewees could respond honestly. Quite a few said so.
At the heart of a sustainable and happy way of life, human beings need to feel valued and have control over their destiny. People who have suffered mental health problems often lose power and control over their own lives. We all agree that by taking part in this project we felt empowered.
However, we are unsure whether it has been valued asmuch as it should have been by the service providers and commissioners.'

Joe: 'For me the sense of involvement and participation at an early stage was important, helping me to gain a clearer understanding of the issues surrounding the research project.'
Leo: '[The interviews] were all fascinating in their own right. I am really pleased that I stayed with the project as it gave me a valuable way of replacing some of the activities I had relinquished.'
Nick: 'I felt very much part of the project. My first interview was the hardest as I was so nervous, but it got easier as time went on. I was struck by how honest the people I interviewed were.'
Loren: 'Almost all the clients wanted me to visit them at a later date.'
Omar: 'One of the first impressions was that all the interviewees were pleased to see me, and some thought that it was good research that needed to be done. My second impression was (their) loneliness and isolation.'
Diana: 'I really believe that throughout the whole process, developing the questionnaire, training and carrying out the interviews, it was good relationships that counted most.'

1. The monitoring group was supported by the Sainsbury Centre for Mental
Health user-focused monitoring team.

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