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The Story of Mental Health Research UK

This is how I came to be one of the founders of Mental Health Research UK. I have not shared my journey publicly before, but in launching our blog I am really pleased to do so and I hope it helps you to understand more about our charity.

I spent most of my career in cancer research working at the Institute of Cancer Research in London and then at Nottingham University. When I needed a change from academia in 1999, I joined the Civil Service as Director of Research and Development for one of the eight health regions in England. I was given a national responsibility too – I had hoped for cancer research, but that had already gone, so was offered mental health research.

I knew nothing about it really, apart from my own lived experience of depression which began in my early twenties and never really went away. I had designed one clinical trial with colleagues in Nottingham – a randomised trial of antidepressant medication compared to counselling. So I had a huge amount of ground to make up. The first thing that I was asked to do was to find some funds for policy-related research – about £9m I seem to remember – which I did by going cap in hand to various agencies - but there was no join up, no coordination.

I had assumed that there would be something equivalent to Cancer Research UK (which had funded much of my own research) and was truly astonished that there was not. In fact, there was nothing at all. That was when I decided when I had a bit more time I would do something about it.

So, a few years later in about 2006, I started to think about how to start a mental health research charity. The first thing was to secure a name, so I talked to my son-in-law (who knew about these things) and he bought me as many of the names incorporating Mental Health Research or MHRUK that were available. Our name has proved to be a huge asset, because people who genuinely care about making a long-term difference in terms of mental health find us easily online.

My next port of call was Mark Walport, the then Director of the Wellcome Trust. I knew him a little and he was kind enough to listen. He also told me that he had had another approach from two barristers, John Grace QC and Dr Laura Davidson. He introduced us, and also organised a seminar with some of the leading academics in the field. We didn’t want to duplicate any work, and we also didn’t particularly want or intend to set up our own charity at the start. However, every single person who attended that discussion meeting urged us to, and said it was sorely needed. So that was how John, Laura and I met and ended up working together. And I am so pleased that we did.

Around the same time, I went to all the mental health charities that I could find, some of which did fund some research, to see what they thought. It was not encouraging, but Rethink Mental Illness was interested thanks to their Research Director Vanessa Pinfold (now Director of the McPin Foundation and a Trustee of Mental Health Research UK). I also went to see the CEO of the South London and Maudsley NHS Trust and as many academic psychiatrists as I had discovered in my Department of Health years. By then I had moved on to be Chair of Nottinghamshire Healthcare NHS Trust and could devote some spare time to my new venture – Mental Health Research UK – which we formally registered as a charity in 2008.

Our first big stroke of luck was an award of start-up funds from the Maudsley Charity and the McPin Foundation to employ consultants to come up with a business plan. They were interested in seeing how funds for research could be raised, they believed in the cause and our vision. But could we fundraise? An important decision was how best we could spend any money that we raised – to have the most impact. We decided that an area that was not well-funded was PhD studentships. They were also relatively affordable at about £100k each.

We were significantly launched by two fundraising events: the first was ‘Ramble for Robbo’ a walk on Long Mynd in memory of Mark Robinson, a veterinary surgeon who had taken his own life. It was an amazing - and very moving - occasion. For me, the walk was challenging, but it was an opportunity to meet lots of people who collectively raised £16k for Mental Health Research UK. The second event was a dinner at Nottingham University given by the High Sheriff of the county who was also a clinical psychologist. These two events launched our first PhD Scholarship – the first of twenty-six so far.

We started small and grew through personal contacts and the energy of our supporters. John, Laura and I were the founding trustees and we developed the Board with key expertise – people who had significant fundraising, accountancy, strategy, academic and public relations experience. We have kept the model straightforward. Some significant moments have been:

  • The merger of MHRUK with the Schizophrenia Research Fund in 2014 – bringing new trustees and expertise and significant resources.

  • A fundraising dinner at Middle Temple in London in memory of John Grace QC, who sadly passed away in 2011 from a brain tumour. We raised over £45,000 at that one dinner which Laura organised, and this was put towards our first John Grace QC PhD Scholarship. This is awarded annually for schizophrenia research (particularly relating to positive symptoms), as John had a family member with the illness. We’ve now awarded eight PhD Scholarships in John’s memory, each worth £100,000 for four years of research.

  • David Riggs joining us as our volunteer administrator – we could not function without his fantastic commitment and skill. And he has helped us to recruit more volunteers which means that more than 95% of all the funds given to us goes on research.

  • Laura’s intrepid climb of Kilimanjaro to raise money for the John Grace QC PhD Scholarship over new year in 2012/2013, where she proudly waved an MHRUK t-shirt from the top of the highest mountain in Africa.

  • Our supporters who have been with us on the journey – some have undertaken amazing challenges for us, some support us regularly month on month.

  • The British Medical Association, the first organisation to choose us as their charity of the year, and this year we were runner up in the highly competitive Dyson Foundation favoured charity selection process in which I had to learn some new technology and presenting skills, as we decided to make a short video.

I am extremely proud of our charity, and the friendships it has afforded both me personally and others. Mental health problems devastate lives, and the research we support is vital. I understand that first-hand, and I am proud of the journey I undertook, armed with my own experiences, to try to make a difference for the lives of others in the future. I thank all our loyal supporters. With your help, we will do even more.

Clair Chilvers

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