On this page, people share their experiences of being involved in CPFT research. Some of the names have been changed to protect people’s identities.

What is like to take part in research?

Kathy's story

Gill's story

Amy's story

Terence's story

Terry's story

 

What is like to get involved in research?

 

Clare's story

 

Emma's story

Having had mixed past experiences of service user involvement, with some which had fallen on the tokenistic side, I was a little reticent at first to get involved in CPFT research. On balance, my experiences have been positive and work has felt collaborative, working alongside healthcare professionals as partners in the research process. Some of the ways I have been involved are:

  • Reviewing design of questionnaires, interview schedules and other study materials. For instance, one project gaining feedback from people using a Crisis Resolution Home Treatment service required several sessions going through draft interview schedules giving advice on wording, format and structuring of questions. Through this process, I was able to use my own experiences of using home treatment services to positive effect as I was able to put myself in the position of someone being interviewed, meaning I could spot where additional questions were needed eg about the referral process into the team.
  • Conducting one-to-one interviews with people who have come forward expressing their wish to take part in the studies. At first I was nervous about this aspect, but with training and each interview I have done have gained confidence and learnt to regard them simply as ‘chats with people about their experiences’ rather than ‘interviews’, which takes off the pressure and also allows a more relaxed atmosphere for both parties.
  • As a member of a service user advisory group. For example, to a research project led by a consultant psychiatrist, helping him to design his study and consider how service users might best be consulted for their views and report their experiences on their continuing recovery from schizophrenia.

It has been most important to me to find a positive way to be involved in helping to improve mental health services and giving other people who use the services an opportunity to have their views heard. Several of the projects I have been involved in have evaluated existing services and it has been rewarding to see the results of these studies fed directly back to the teams, but sometimes frustrating that it is difficult to monitor if recommendations have been taken note of for future practice. I am particularly pleased and proud to see that people’s views are captured in their own words from the transcripts of their interviews so that the finished reports include many direct quotes to illustrate the main points raised. 

There have been personal benefits to my involvement. It helped to continue to rebuild my self-confidence which was knocked by a long period of depression. Gaining new skills, working together with other service users and collaborating with professionals as part of a project team have all been part of my recovery, back to believing in my own abilities.

Daniel's story

I am not sure how I got involved in research. I think it was through Iliana, the User and Carer Research and Development Manager. I think I went to a training scheme learning about the differing kind of research. This training proved invaluable when it came to reviewing a research study. I have been involved in reviewing several studies and each one has proved interesting reading. I read the research material several times and review each project under a set of objectives which makes the reviewing process easier. The completed forms are then reviewed and talked about in a meeting. The meetings bring about points that are not in the forms but are often invaluable to the research design process.

This experience has given me the confidence in myself to go on to do other things in my life. It has been an inspiration to be involved at this level. I have also found researchers have valued my comments and I think they value input from a different perspective. I have had positive feedback from the researchers and they have listened and responded to my comments.

I personally have enjoyed the training and the follow-up meetings that I have been involved with. I think doing the research reviews the more time you spend on them the more useful your input, although a lot of the terminology is confusing. The projects normally need to be turned around fast which means you have to make a time commitment to the project.

It is good to have something to concentrate on and is inspiring at the same time. I would recommend the process to people who have the time, energy and knowledge of the subject. If you have all these attributes it is a rewarding process.

Kate's story

Participating in research as a service user research reviewer has greatly increased my confidence both in services and in myself and my ability to be heard. The reviewer role is flexible enough so I can do as much or as little as I need to, and at the same time keep in the loop of what is happening with mental health research. For me, this role has been a stepping stone towards getting full-time work. Thank you so much!

If you want to share your experiences with others, please contact Iliana Rokkou, User and Carer R&D Manager, at iliana.rokkou@cpft.nhs.uk or phone 01223 746009.

The page was last updated on 03 February 2016 by kinzinga.kieta.

Cambridgeshire and Peterborough NHS Foundation Trust
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