Read about some members of Service Users in Research
Members of Service Users in Research come from a variety of backgrounds and decided to get involved in research about mental health for different reasons. On this page, you can find out about a few of them, and how they get involved with research through the MHRN.
Debbie Butler
Debbie Butler first became involved with the Mental Health Research Network when she went along to a meeting organised by the East Midlands plus South Yorkshire regional office, held to encourage people with experience of mental health problems to get involved in its work. Debbie, who has a diagnosis of personality disorder, was working part-time for the Nottinghamshire Personality Disorder and Development Network, a community service run by Nottinghamshire Healthcare NHS Trust. The service offers various treatment programmes, and advice and information to help people make informed choices, as well as advocacy services.
When she left the Network, she started working on a freelance basis for the hub, organising regular conferences that brought together people with experience of mental health problems, student mental health professionals and researchers.
In June 2010, she successfully applied for a part-time post at the hub: she is now ‘clinical studies assistant’ and her remit is to encourage people with personal experience of mental health problems who live in the East Midlands and South Yorkshire area to get involved with both the work of the hub and Service Users in Research, and to introduce them to research teams who want expert input and advice.
She also goes along to the Service Users in Research committee to meet with representatives from other hubs to discuss future plans for involvement.
‘Researchers in the area are very keen to get people involved with their studies,’ she says. ‘What tends to happen is that they approach me first of all, and then I approach individuals who have the relevant experience.’
Debbie is not new to research: when she did a Business Studies Diploma in the 1980s, she was enthused by the concept and techniques, but applied them in different fields, including marketing.
When she completed the course, she went to work for the Land Registry, where she stayed for 12 years before retiring on the grounds of ill health.
She became a full-time mother, and during this time volunteered for an advocacy service offering support to people using Nottingham’s mental health services. She also trained to be a counsellor.
The structures and terminologies used in mental health research are new to her, and she says it has been a steep but very interesting learning curve.
In addition to her job with the hub, she is involved as an advisor in a research project which is to look at ways of encouraging people with personality disorder to use mental health services.
‘I think it’s important to involve service users in research because only they know how it feels to have a diagnosis, what it’s like to live with it. Clinicians and researchers can only read about it.
‘Being involved with the MHRN has benefited me. My confidence has grown tremendously. When I first got involved, I couldn’t answer the telephone, but now I do presentations and chair meetings.’
Debbie is also studying – she is a student on the Working with Personality Disorder: Developing Understanding and Effectiveness programme set up by the National Personality Disorder Development Programme Knowledge Understanding Frameworks. ‘I love studying and I’m interested in this course because of my history of personality disorder,’ she says.
Jackie Barrett
Jackie Barrett first heard about the Mental Health Research Network at a meeting of the Service Users Research Forum at the Royal Free hospital. She had joined the Forum after seeing an advert appealing for people with experience of mental health problems to give advice and views on research ideas and methods.
‘The manager of the North London Hub (regional office) Sandra O’Sullivan came to one of the Forum’s meetings to talk about the work of the MHRN and to find out if anyone was interested in working with the Hub on a website created by service users for service users and carers, and to write lay summaries of research projects,’ says Jackie.
So since April 2010, she has worked on the site, www.sunlows.org.uk, which is supported by the North London Hub and contains information about research being carried out in the area. She has also helped create a toolkit for researchers who want to involve service users and carers in their research. And she has developed a communication skills course to give people confidence to get involved in meetings and understand more about the research process.
‘I previously knew nothing about the field of research, but I am learning, not just about research, but more about psychosis, about other mental problems, and about the medication I take,’ says Jackie.
‘It’s quite nice to be around people who understand about mental illness, and not to be hiding all the time, to be in a place where there is no back biting or gossip and no discrimination or stigma. You don’t have to explain yourself in this environment, and it is valuable to meet other service users and see how they are coping.’
Jackie also goes to Service Users in Research committee meetings as the MHRN North London Hub’s representative, and meets with representatives from all the other seven MHRN hubs who come together to discuss future work and what’s happening in terms of service user involvement in all the regions.
Jackie is currently unemployed, and being involved with the MHRN is helping with her recovery, she says.
After working at the National Theatre (first of all in catering and then in the box office) for 15 years and seeing hundreds of plays, she decided to do an English degree at Birkbeck College, University of London, and then followed this up with post graduate teaching qualifications. She went on to become an English lecturer in further education colleges in London.
‘I think it’s good to use your brain,’ she says, ‘and working with the MHRN allows you to do that. I feel as though I am learning something, but also helping myself stay well. The work is very interesting and I’m now looking for opportunities to get involved in a research project.’
Jackie is also a service user advisor to the Camden and Islington Foundation Trust. where she is involved in the re-registration and training of Approved Mental Health Professionals who are involved in decision-making about people who are sectioned under the Mental Health Act. These are social workers and other mental health professionals who have to be re-registered every 5 years. She is also involved with the complaints committee of the trust.
page last updated 29 September 2010