Patient story: Bristol woman gives back to mental health services by taking part in research
A woman with a chronic mental health condition has spoken of her recent opportunity to take part in research as part of a national research awareness campaign.
The National Institute for Health Research (NIHR) is running the campaign, I AM RESEARCH, to promote International Clinical Trials Day on 20 May and the week after and the benefits of taking part in health research.
Claire, 43, from Bristol, lives with psychosis and voice hearing, and was approached to take part in a national study in November 2017.
“I was contacted with the opportunity to take part in a questionnaire study and I said ‘yes’ immediately. I have worked as a volunteer with mental health services and I know how important research is.”
Claire took part through Avon and Wiltshire Mental Health Partnership Trust, one site of more than 20 across England offering the study, including the 2Gether NHS Foundation Trust, Gloucester.
Research officer for the study, Dr Michelle Phillips, says: “Previous research had measured the physical aspects of hearing voices in psychosis, such as how loud they are to the person, but not the emotional impact. This questionnaire was designed to devise a measurement for the distress that Voice Hearers such as Claire can feel.”
Claire says, “The researcher who called gave me everything that I needed to know. She was very understanding and made me feel very comfortable. I have been so lucky to have help and support in my experiences of mental health care. If I hadn’t I wouldn’t be where I am now. For me, taking part in research was a case of giving something back.”
Results from research studies are sometimes not available for a long time after taking part but that did not deter Claire. Claire says, “The most important part of a study is the knowledge that comes from it for the public and for health professionals. It doesn’t matter when the findings are produced as long as they are. It could be six months, it could be 20 years.
“So much needs to be done to improve understanding of mental health and every part of mental health research helps people. There is still so much shame and so much stigma around having a mental health diagnosis. People can become so isolated and yet a diagnosis needn’t define who you are as a person. I’m no different to anyone other than my symptoms and how I manage them.
“Being a voice hearer is very hard to acknowledge. It can be really difficult to ask for help and admit that it is happening. But the support you receive and the chance to become more than your condition is really worth it. I can manage my condition now but I have had good and bad experiences with GPs. I think that the more knowledge and information that GPs have access to, the better, and research like this contributes to that.”
Every year, more than half a million people help the NHS to improve healthcare and develop life-saving treatments by taking part in health research.
For 2018, the I Am Research campaign celebrates the NHS’s 70th birthday (NHS70). The national NHS70 campaign, led by NHS England, is focusing on how the public can ‘give a present’ for the NHS’s birthday on 5 July and leave a legacy after the celebrations are over. The NIHR is leading on one of NHS70’s seven themes: asking the public to take part in health research.
Dr Sue Taylor, Chief Operating Officer for the Clinical Research Network West of England said: “It’s been proven that health outcomes are improved for patients in research-active settings. Over 21,500 people took part in research studies across the West of England last year. It is our mission, especially in this NHS birthday year, to give everyone who uses the NHS to have the opportunity to take part in research. Our thanks go out to Claire and others like her for helping to improve care and health outcomes for everybody.”
To find out what research is available for you to take part in, visit www.iamresearch.co.uk or ask your local health practitioner.