The Researcher, edition 4

Rob Young Interviews Tina Coldham, the Chair of the INVOLVE Advisory Group. Introducing Tina Coldham: Interviewed by Rob Young

Social media is all about perky PR but slow-burn mental health issues don’t fit that format, howdowe respond to that? The anti-stigma stuff is good: some celebrity trying to convince everybody that we have to think about our mental health, those conversations are very helpful but there is still a stigma around severe and enduring mentalhealthproblemsandpeople’sunderstandingof how society, or doesn’t, take care of those people.

Who inspires you? I’ve always lookedup towomen inpositions of power and what’s nice about research is that you find those womenthere.Notenough,but theyarethere,pushing things forward.

Why did you become an advocate? What got me into this line of work was continually getting ill, getting better, taking medication , taking new ones then being sent back to the same psychiatrist. I remember thinking, is this all they can offer? There should be more. On the reception desk was a little flyer for a community development mental health project and it changed my life. I got started in research by doing it myself, I didn’t even realise it was research at the time, until someone said, “what do you think it is?” ‘That was another thing about breaking into research, breaking down the myth’ Is language an issue? Yes. As you go through life, your diagnosis changes whenever they have a new theory: my once ‘reactive depression’ is now called ‘treatment resistant’. What annoysmeabout thatphrase is that I’mbeingblamed because the medicine doesn’t work. I’m failing the treatment rather than the treatment’s failing me, which is another reason for getting patients in research, to ask those different questions. How did you become so articulate? I hang around with bright people and it rubs off! Thatwas another thing about breaking into research, breaking down the myth. I left full-time education with a handful of O-levels. When I first went into a University to be part of a user-group that was quite a bigmomentbecausethiswasaplacewherethe ‘other people’ go.

Who are you? Tina Coldham.

What do you do? I’m the first patient/service user to be Chair of the INVOLVE Advisory Group. That’s somewhat of a coup. It sends a strong message out to the research community about patient and public involvement. I call myself a ‘survivor researcher’ as I work, and research, froma patient’s perspective. We coined the term because it says something about where we’re coming from: the lived experience. Are you a translator, a champion or a broker? I suppose peoplemight think all of the above, but I’d rather be seen as a person who empowers and helps re-dress thebalance.Mental healthconditions canbe viewed verymechanically but life is not a dry subject. It’s fumbling about in the dark. It’s a board game. People liveverypoor quality lives because they’renot helped. They struggle in a cycle of poverty. There’s a phrase inthedisabilitymovement, “Nothingaboutus, without us” that pretty much says it all.

Is impact a big issue? Yes. Money is short so we must prove what we do.

Is it hard to get real-world impact into a box that suits the NHS? Yes. There are very narrow perspectives around diagnosis and condition management, whereas people talk about ‘living their lives’. What are you proud of? I helped to set up NSUN (National Survivor User Network). I also used to run a depression self-help group and there was something very human about that. Humbling. ‘I’ve always looked up to women in positions of power and what’s nice about research is that you find those women there’ Who supports you? The INVOLVE staff are very supportive and practice what they preach. I also have a very supportive husband.

Do you think, if you raise awareness, you should do something with it? For me, it’s an everyday issue. It’s not about ‘raising awarenessday’, orweek,weshouldbehelpingpeople every day. You do great work. I’m one of many. For me, building a community is all about genuine relationships and that’s particularly important when you’re outside the system trying to influence. Yougoona journey together. Researchcan help that evolve.

What advicewould you give to your 16-year-old self? Never underestimate your abilities.

Tina Coldham

Chair of INOLVE Advisory Group

Tell us about your PPI involvement in research #TheResearcherMagazine info@researchnorthwest.nhs.uk

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