Don Bryant

Don’s story – Why I champion the voice of service users

By Don Bryant, M-RIC Lead Service User Representative.

I wanted to be a pharmacist because I was always interested in chemistry at school but then I wasn’t clever enough to pass physics at A level. My father suggested banking as a safe, secure job and I joined the Midland Bank, starting as a clerk in our home town of Newcastle upon Tyne and ending as a branch manager in Aigburth, Liverpool.

I took early retirement aged 43 and set up a management training consultancy. Everything was going well until a bombshell hit my biggest clients – insurance companies which merged and then didn’t need my services.

After that I worked for several charities, helping to secure funding and managing their operations.

And then at the age of 60 I became ill with severe depression.

I don’t know why it happened, there was no particular trigger. I had had to make a couple of people redundant but that didn’t feel like a flashpoint. My mother had developed Parkinson’s and was becoming difficult to manage, but other than that I couldn’t identify a reason for it.

I didn’t know what was happening to me. I knew I wasn’t sleeping well; I was tired all day; I just kept thinking I need a good night’s sleep and things will get better in the morning – but they didn’t and over the next six months I had suicidal thoughts most nights.

One day I broke down at my desk, I just started sobbing. I went to the doctor and was immediately signed off work for a month and given anti-depressants. After three months the drugs weren’t working so I was referred to Mersey Care NHS Foundation Trust, where I was treated for the next three years.

I felt a numbness; it was a relief in many ways that it was diagnosable because I didn’t know what it was. It put more pressure on my family, my wife in particular; she had to continue working for much longer than we anticipated. She got a good job in John Moores University – strange to say it was almost the making of her because it forced her to make a career in her late fifties.

I felt I was in a continual fog; no enjoyment, no sadness either, just very flat, not having any enthusiasm about anything, not really wanting to engage, not really wanting to get out of bed in the morning and just sitting for hours in a chair, not even bothered to watch television.

It took about a year before I started to feel better; the anti-depressants then kicked in and I started thinking that I needed to do something for myself, to get me out of bed in the morning. So I took on two voluntary jobs – one with the Samaritans, which I kept up for six years and found very rewarding and stimulating; and one for a local hospice.

At one of my checkups I mentioned the voluntary work to my consultant and she suggested I think about volunteering at Mersey Care. I thought it was just WRVS and trollies and library books but I found that it wasn’t and I was seconded to the research team, which was a user-led project.

It was wonderful; I was talking to people, I felt as though I had a purpose.

I enjoyed the research side; I was involved with Everton in the Community evaluating the programmes they ran for Mersey Care. I was asked to join the Mersey Care research and development group as a service rep – and I’ve remained there ever since.

That was 14 years ago. I gradually took on more responsibilities, championing service users’ rights, on the quality assurance committee and the audit committee; the high secure unit management group; and the local division management group, taking part in their monthly meetings.

My mental health got better and better; I became more outward-focussed, I had a mission, which was to have service users involved at the highest levels of Mersey Care; and to have co-production in all issues.

People often came to me for my opinion, the Chief Executive Prof Joe Rafferty being a classic example. He and I have talked a lot over the years about research and my involvement in research.

I was asked to join the serious incidents investigation team as a service user rep, investigating suicides and attempted suicides, interviewing staff and family members. That was very rewarding because I felt I was able to talk at a level that the family and friends particularly appreciated because they knew that I’d been through that as well.

At the same time I became a trustee of the Mental Health Network, the network of mental health trusts and voluntary organisations and stayed in that role until I was discharged as a service user.

After being discharged, I became a public governor of Mersey Care and was more and more involved in research. I am a co-applicant and public advisor on two trials, GOTHIC and GOTHIC 2.

I was asked to get involved with the Mental Health Research for Innovation Centre (M-RIC) at an early stage and what I enjoy about it is that it takes co-production with service users to another level.

We still have a long way to go with co-production.

I use the analogy of women gaining the vote in 1918; it took another 60 years for them to get equality. We now have patient and public involvement and engagement (PPIE) which has been on the go for 25 years but we still haven’t got equality in planning services.

Women now have equality in law but are still fighting for it – PPIE is the same.

My mental health today is rounded, enjoyable, happy. I have two lovely grandsons and another grandchild on the way, so everything is positive.

I still get bouts of depression, but I know when they are occurring, I see the signs and they last a couple of days and I am just a bit out of it and want to withdraw, and Alison my wife knows and just lets me be.

I would say to anyone else with depression – keep occupied, find something to do; I had never remotely thought about research. I had the stereotypical idea that it was done by boffins in university, and they didn’t speak the same language as us. But I realised it isn’t groundbreaking stuff, anybody can be involved. It isn’t about wonder drugs or genetic engineering; most of it is everyday observations and personal experiences.

It is immensely helpful to have family and friends behind you.

I have never shied away from telling people about my issues; I am very open about it. I never told my wife I had contemplated suicide until she came with me to see my consultant; I never opened up to her and if I could change anything, I would have opened up and trusted her more, but at the time I didn’t want to worry her, so I lived a lie for six months though I didn’t know what the lie was that I was living.

Note: Don Bryant is co-author of ‘Co-production: towards equality in mental healthcare’, published by PCCS Books.

Don Bryant discusses service user involvement in M-RIC

Find out more about M-RIC Patient and Public Involvement and Engagement.