Service Users Shape Research — meet Paul Fraser.

Meet Paul Fraser, 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 learnt experience input into research, evaluation projects and funding bids. Service User participation in research enables a relevant perspective and improves quality by ensuring it is tailored and appropriate to our community. The HEER group can help shape design, improve recruitment and review the appropriateness of methods and language. So why have we never shared experiences of it on our website? Well, now we are and we’re starting with one of our members, Paul Fraser, who has not only been the co-chair of the SUN (Service User Network), worked with the Recovery College and with Leeds Involving People, but also manages to find the time to be an active member of the HEER group.

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

It’s a small friendly group that meets every month and we’re all service users and carers (or have been). We’ve had different walks of lived experience of Mental Health Services in Leeds and we share that experience in a therapeutic and friendly environment. We all get involved with different studies that the University or the trusts or anyone who’s doing any research in to Mental Health across the country, they can come to our meetings and give presentations. We have discussions and we ask them questions about what the study is and what they’re doing and what could maybe be changed or improved. We’re giving our experience and talking on behalf of others as a role model and sharing it in a therapeutic environment. Different studies that we’ve been involved with include dementia, about anxiety and depression, eating disorders, cardiovascular and heart problems with medications. We’re looking at long-term side effects, diabetes, weight gain from medication, different medication for different illnesses.

It’s just like an umbrella of different services/studies that are going on. We always get a chance to represent other service users as well on the meetings; be their voice.

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

At least six or seven years now. I’ve been coming before lockdown when we used to meet face to face at the Becklin centre and I’ve been coming to zoom meetings ever since. I like to go, it keeps me active and busy and I feel valued. I contribute towards the discussions, and it keeps me well.

I’ve been coming quite a long time; I try to encourage other people to come as well and try to get fresh ideas to move forward. I joined the group because I wanted to have a say in what goes on in research and how to improve services. I’ve been through the entire mental health system and it’s been very daunting and traumatic, being in hospital, not knowing when I’m getting out. I’d like to help people with the studies by being a role model and helping to talk on behalf of others that can’t speak up for themselves.

Do you think there’s one study subject that the HEER hasn’t seen yet?

An area that I’d like to see is a study about people with schizophrenia/bipolar; they don’t live as long as a “normal” population. Life expectancy is shorter than the “normal” population and I want some research going into that. I’m also really interested in personality disorders; I feel like people with personality disorders are put to the side. I’d like to see more research into interventions and effects of medication.

Another topic we need to be looking at is getting more service users involved from diverse backgrounds and underrepresented communities.

What future question would you like answered by someone in a future article?

It would be great if someone from the HEER Group could share their life story, where they are now and what they’ve been though in the past. Have they been through a traumatic time and has sharing their lived experience helped them improve? Instead of bottling it all up share it in a friendly environment (like the HEER Group). We should just value everybody’s opinions and show respect.

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?

When I’ve been in hospital, the NHS did a lovely pudding that I used to love – chocolate cake and hot chocolate sauce. I also liked the pink custard and Vienetta. It’s not really cake but good. And Black Forest gateau….you never see it now…..

We end this article staring wistfully back with Paul at the great selection of desserts in the 80s but let’s bring you back to 2023, mental health research and the HEER group. If you are interested in getting into research at LYPFT, either as a researcher or a service user, please visit our Research hub to find out how. You’ll find this article in the latest edition of Innovation. It also includes information about the great work done by Jack Mumford, Eimear Devlin and George Crowther on the future of ECG monitoring (think tiny, non-invasive device for fingers rather than stripping off your shirt and having sticky plasters attached).

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 Paul for sharing his time and for being a valued member of the Help from Experts by Experience for Researchers group.