Meet the HEER group — Alison Potts

Meet Alison, a member of the Help from Experts by Experience for Researchers group, on how service users can help shape research.

The Help from Experts by Experience for Researchers (HEER) group has been part of LYPFT’s service user centric approach to research for a while. It provides the vital lived and learned experience input into research, evaluation projects and funding bids; it enables collaboration. Service User participation in research enables a relevant perspective and improves quality of research by ensuring it is tailored and appropriate to our community. The HEER group can help researchers shape design, improve recruitment, and review the appropriateness of methods and language.

Alison has been an active member of the group for some time and is in fact a bit of a “groupie”, with links to other groups including the Service User Network (SUN), Leeds Involving People, Healthwatch, Everybody’s Voice (service user/carer reference group for University of Leeds Clinical Psychology Course) and Friends of the Earth. She has severe brain injury, sight loss and epilepsy and really enjoys being involved in research and volunteer work.

Tell us about the HEER Group, what is it really?

It’s a group that basically helps to support research and the developments of research. We help to give a “service user” or experienced point of view into the proposals for research.

It is about having lots of different perspectives, inputs and experiences. No two people are the same, you can bring that element that nobody else can bring to a project, a decision or to a conversation. Your perspective is needed and that’s the nice thing. The group gives space to different ideas and I feel like I’ve learnt a lot through it. We live in often chaotic times, so hopeful, progressive action, like being part of the HEER group, really helps, along with helping others.

How long have you been a member of the HEER group? And why?

I’ve been a member for a couple of years now. I decided to join because I’ve always been interested in research. Way way back, I got involved at Chapel Allerton Hospital, they do a lot of research in to joints and rheumatology and my mother was treated there. Also, I got involved with Diamonds, based in Bradford. My mum had schizophrenia and it was looking at that alongside other mental health conditions and diabetes. I’ve got bonkers long-term conditions as well so it was something where you feel that you would like to support it because you want development in medicine and healthcare to try and assist other people in the same kind of situations.

I felt a bit unsure about first linking in but got advice saying just give it a go and see what happens, you can’t harm anything by being sat there.

Find more information about the Diamonds randomised control trial project.

What areas of mental health research particularly interest you?

Really if I’m utterly honest, everything including child mental health. I think we are increasingly aware that most people have stressful periods in their life; it’s just that usual thing of scales and balances and the way it affects us. As we know there is cultural and social aspects as well. When my mother had schizophrenia (she was diagnosed about 40 or 50 years ago) there was a whole different culture and a whole different view around it. I think the developments are positive now, there’s more awareness and more of a recognition of the effects of lifestyle.

It was very different when I was a child. it felt difficult to have a conversation with people. I didn’t start school until after I was six because of the way that people were institutionalised and I was moved around. You got the stigma, the pain, as a child or carer or family member – people didn’t want to go near you. It was a totally different atmosphere around it.

I would be interested to hear from anybody and everybody at the HEER group in terms of research. Due to my brain injury, I am relearning everything as life progresses so being able to have somebody present on any research is teaching me things that I don’t know about but would like to know about.

Finally (this question may be due to our Patient Research Ambassador being nearly as passionate about cake as she is research, but not quite), what is your favourite cake?

I’ve been a vegan for 44 years yeah so I’ll take any vegan cake, even pineapple.

More information on HEER:

If you are interested in getting into research at LYPFT, either as a researcher or a service user, please visit Research and Development. If there are questions that you would like to ask the HEER group, please include in the comments below – you may see your question in our next news article.

Thank you to Alison for sharing her time and for being a valued member of the Help from Experts by Experience for Researchers group.