Read about some of FACTOR's members
Members of the FACTOR network 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 our members, why they became part of FACTOR and how they get involved with research.
Philippa Lowe
Ruth Hennem
Josie Forshaw
Philippa Lowe
Philippa Lowe is one of two FACTOR members who regularly attend meetings of the research team running a five-year programme called IMPaCT. This is funded by the Department of Health’s National Institute for Health Research and focuses on the physical health needs of people with mental health problems. She is also a member of FACTOR’s London-based Carer Reference Group and has spoken about her involvement at a conference organised by the Mental Health Research Network North and South London and South East regional offices.
‘The IMPaCT meetings are very much administrative, nuts and bolts meetings, and they make it clear what this research business is about – a painstaking and laborious process,’ she says. ‘The researchers are very interested in our contributions. They ask for opinions on different aspects of actually doing the research and we contribute points they may not have thought of.’
One of the studies in the IMPaCT programme is a randomised controlled trial to test a support package designed to help people with psychosis take better care of their physical health. As a result of the input from FACTOR members, the research team decided to set up carer groups so they could explain the trial to relatives and friends of people participating in the project.
FACTOR members also advised IMPaCT researchers about the best way to present information in an easily understandable way. They helped to edit parts of the training manual for care coordinators and information for people recruited to the trial. They felt it was important that the material used by mental health professionals was written in plain English to make it easier to use and to encourage them to speak to people with mental health problems and their family members in the same accessible way.
Philippa is a trustee of the mental health charity Rethink as well as a member of FACTOR and takes on as much as possible in this capacity.
‘My way of coping with everything is to get involved with as much as possible. When I realised my son had this diagnosis, it was good for me to have a lot of relevant occupation,’ she says. ‘To keep very busy is good for me, and it’s also good for me to do lots of things around schizophrenia.’
Ruth Hennem
Ruth Hennem is involved in two research projects through FACTOR. She sits on a ‘Lived Experience Advisory Panel’ (LEAP) that advises researchers working on the REFOCUS programme. They are looking at ways of helping mental health professionals extend their knowledge and skills to better support the personal recovery of people with mental health problems. The REFOCUS programme is funded by the National Institute for Health Research and led by researchers at the Institute of Psychiatry, King’s College London.
‘LEAP is made up of people who have experienced mental health problems, carers and professionals with a variety of life experiences, and we meet about every nine months or so,’ says Ruth. ‘The researchers ask us specific questions and tell us what is happening in the research. It was a bit of a shock when I went to the first meeting because it was fast-flowing and I felt thrown in at the deep end. It seemed very complex and there was a lot of jargon – it was hard to follow.
‘The researchers are happy to explain anything we don’t understand, and I think our contribution is valuable and they listen to what we say. In fact, I’m amazed that they do listen as my experience of communication with mental health professionals about my sister is the complete opposite – it is often poor.’
Ruth also goes to meetings of the Mental Health Research Network’s Clinical Research Group about carers. The job of this group – made up of researchers from all over the country – is to come up with ideas for future research projects. ‘They are at the very beginning of planning projects, putting proposals together,’ says Ruth. ‘They do listen to the carers on the Group, and I do feel our views are valued. It’s more difficult for us to come up with ideas, because they say funding would not be available for a particular piece of research, or that someone has tried to get funding in the past. So there are limits on how far we can contribute. But they put up lists of proposals and we can say which we think is most important to us, and we can decide which projects we would like to be involved in, so I feel I can have an effect, to an extent.’
Ruth wanted to become involved in research to get information to help her support her sister, who has schizophrenia. ‘It’s hard to find out about research unless you are involved with it,’ she says. ‘I want to know about what is going on, about anything new that might be able to help my sister. Over the last few years, as I have become more responsible for trying to help my sister, I have been given very little information.
‘I think we, as carers, can contribute a lot to research because we have so much knowledge about the difficulties and problems people face on a daily basis.’
Josie Forshaw
Josie supports three members of her family. ‘You can’t work, because if something occurs you have to go, you have to sort things out,’ she says. 'But I could not stay in looking at four walls, so as well as FACTOR, I am involved with support groups, carer groups and service user groups.’ She also sits on interview panels and other advisory groups at Springfield Hospital as a carer representative.
‘One of the reasons I wanted to get involved in research is to find out more about genes. I have two grandchildren born to two people with schizophrenia, and I want to find out what to expect. Being involved in research means you get to learn things that are useful.’
Josie is a member of FACTOR’s London-based Carer Reference Group, and has spoken about her involvement in research and her experiences of being a carer at conferences.
‘Psychiatrists don’t have a clue,’ she says. ‘They don’t know what it’s like to live with an illness like schizophrenia and we do. I think the researchers that ask advice from FACTOR do listen to us, especially when there are a few of us together.
‘You also get support from each other at the Group. The people I sit with around the table know what you are going through because they have been there and they are doing it now.’
page last updated 7 November 2011