Why I Co-founded MHRUK

Following on from the blogpost from Professor Clair Chilvers https://www.mentalhealthresearchuk.org.uk/post/the-story-of-mental-health-research-uk, here's one from another of our three co-founding Trustees, Dr. Laura Davidson. She gives her perspective on why the creation of Mental Health Research UK in 2008 was so crucial.

What feels like a very long time ago, I undertook a Ph.D at Trinity Hall in Cambridge on mental health law and the European Convention on Human Rights. I rather fell into the area. Keen to undertake research on medical law, I found that the topic I had in mind was already being researched. Since Ph.D students are required to ‘contribute to learning’, I had to find something more novel. I was particularly interested in human rights, having studied international human rights law as part of my Masters. After a search, I found that mental health law was rather neglected – similar to how funding for both mental health care and research is much lower when compared to physical health.

Like most students, four years of study had me somewhat burnt out with regard to the area of law I had chosen to study, which was quite dry and largely based on statute (the Mental Health Act 1983). Accordingly, I decided I would be quite happy to steer clear of mental health law. Having joined a medical Chambers in London which also did a range of junior work in various fields, I initially started practicing mainly in criminal law. However, my expertise in mental health law was soon sought out – there were not many Barristers specialising in that area in the country, let alone any with a Ph.D on the subject! Thus, any work involving mental health that came into Chambers was sent my way, and soon I had developed a bit of a name for myself in that field. I was also surprised to find how the Mental Health Act worked in practice immensely interesting.

A few years later, I joined a different medical Chambers in London. Every Set of Chambers has a ‘Head’ who is a senior Barrister - usually a Queen’s Counsel or ‘QC’ which means they are highly regarded. There were two Heads of Chambers when I arrived, one of whom was John Grace QC. At the time I was going through a difficult period for a number of different reasons, including the recent death of my mother. Despite my junior status and the fact that I had limited practical experience in broader medical law, John supported me joining Chambers. Over time, he also became a very dear friend. I discovered that he had a close family member who suffered from schizophrenia. John was deemed their ‘nearest relative’ under the Mental Health Act. This meant that he had a number of ‘powers’ such as the right to block his relative from being ‘sectioned’ in hospital, and the right to request a tribunal hearing to determine whether they should remain subject to compulsory hospital detention. This responsibility weighed heavily on John, and over the next few years he would often seek me out and ask for my professional advice. It became clear that his relative was treatment-resistant, which is in fact very common; over a third of all people diagnosed with schizophrenia fail to respond to current antipsychotic medications.[1] Despite the debilitating side-effects of such medications (such as weight gain and tardive dyskinesia), patients deemed a risk to themselves or others can be forced to take them under the Mental Health Act – even if they fail to have much or any effect.

John’s relative was plagued by the delusion that medical professionals had inserted something into their brain to control them, and would write letter after letter to experts around the world pleading for them to remove it. Accordingly, their quality of life was extremely poor, and they were unable to work. Sadly, this type of delusion is relatively common in schizophrenia, which I knew from both medical notes and my many conversations with patients whom I represented in my legal cases.

Having seen the devastating effect of schizophrenia on people’s lives I shared John’s feeling of helplessness. Huge stigma and fear surround the illness, and there is so little understanding of its causes and how to treat it. Contrary to popular belief, people with schizophrenia are not generally predisposed to violence,[2] and the quality of life of those who suffer from treatment-resistant delusions and hallucinations is incredibly poor. I was immensely frustrated that in my work as a Barrister I was seldom able to assist those I represented who were subject to compulsory detention but did not respond to pharmacological drugs. Despite this – and contrary to the Convention on the Rights of Persons with Disabilities to which the UK is a signatory – they were frequently forced to take medication against their wishes under legislation which discriminates against persons with psychosocial disabilities. I found that if a psychiatrist was of the view that either a patient must take medication, or that they were not yet ready for discharge, it would not matter what brilliant legal argument I put forward; my client would have to continue taking unpleasant and/or ineffective medication, and a tribunal would not release them from detention.

It was for these reasons that John and I had many a discussion about the lack of research into the aetiology of mental health conditions. I pointed out that there was no mental health research charity in the UK, unlike for physical health. For example, Cancer Research UK and the British Heart Foundation receive enormous amounts of funding. Due to our mutual frustrations, John and I decided to contact Professor David Porteous at the University of Edinburgh who had written a paper lamenting the lack of funding for research into mental ill-health. When we reached out, David informed us that there were a number of like-minded individuals, and introduced us to our eventual co-founding Trustee, Professor Clair Chilvers. Clair had also been dissatisfied with the lack of focus both globally and in the UK on research into mental illnesses rather than physical illnesses (about which she has contributed to this Blog).https://www.mentalhealthresearchuk.org.uk/post/the-story-of-mental-health-research-uk After convening a meeting with various key stakeholders (kindly hosted for free at the Wellcome Trust), it was unanimously agreed that we should set up a new research charity. This was rather overwhelming as we all had full-time jobs and no charitable experience! John and I wracked our brains for a clever name, but in the end we decided that the domain name already registered by Clair – Mental Health Research UK – was perfect since it made it abundantly clear what we intended to do.

Thus, in 2008, we registered the charity with the Charity Commission, and the UK’s first charity dedicated to funding research into the causes of mental illness in order to find better treatments with fewer side-effects was born. We did not wish to become one of those big, sprawling charities which uses donations to pay a fortune on rent and employing a vast number of staff members. Instead, we decided upon a lean model, using only volunteers to ensure that no less than 95% of all our donations go to what donors want – mental health research. The most effective method to do that was via a competitive process for Universities, with the best research topics selected. This is assessed by a panel of experts (both scientific and by experience – in other words, people who have or who have had mental health issues). Once successful in winning an award, the University then advertises for the best Ph.D student through a second-tier competitive process. In this way, Mental Health Research UK capacity-builds research excellence.

Very sadly, in 2011 my good friend John passed away two years after having been diagnosed with a brain tumour. I still miss him greatly – an intelligent, compassionate and humorous man who was taken far too early. I decided to organise a memorial dinner in his honour at Middle Temple (John’s ‘Inn of Court’ – one of four Inns which all Barristers must join). We had a sumptuous dinner, copious wine, fantastic music, speeches and a raffle. All in all, we managed to raise over £45,000 in one evening, and thus created the John Grace QC Scholarship, awarded annually ever since for research into schizophrenia. While, sadly, John’s relative with schizophrenia has no treatment that helps, it is hoped that this will make a long-term difference to others in the future. Given John’s particular interest, we have a preference for research proposals for his Scholarship which focus on positive symptoms of schizophrenia (for example, delusions and hallucinations), rather than negative ones (such as poor affect or lack of concentration). To date, we have offered funding for 29 Ph.Ds, 11 of which have been John Grace QC Scholarships (plus three more Ph.Ds on schizophrenia). I am incredibly proud of this achievement and contribution to learning and practice, and I know John would be too. I hope in the future our work significantly improves understanding of the causes of all mental illnesses - and that, in particular, the research on schizophrenia we fund makes a real difference to people who would otherwise have to endure the debilitating and upsetting symptoms arising from this illness.

Dr. Laura Davidson

[1] See, e.g., Potkin, S .G., Kane, J. M., Correll, C. U. et al. (2020), The neurobiology of treatment-resistant schizophrenia: paths to antipsychotic resistance and a roadmap for future research, npj Schizophr, 6(1). Available at: https://doi.org/10.1038/s41537-019-0090-z. [2] See, e.g., Buchanan, A., Sint, K., Swanson, J. et al (2019), Correlates of Future Violence in People Being Treated for Schizophrenia American Journal of Psychiatry, 176(9): 694-701. Available at: https://ajp.psychiatryonline.org/doi/10.1176/appi.ajp.2019.18080909.