Background to the initiative

Mental Health Research UK: promoting excellence in mental health research

The burden of mental illness
The burden of mental illness is widely underestimated. In the UK:

• of the 280 million consultations with a general practitioner each year, 30% are related to mental ill- health
• 3 in 10 people have sick-leave from work related to their mental health in any one year
• 91 million working days are lost due to mental ill-health
• 1 million people are on long term sick-leave due to mental illness, and of those on sick-leave for more than 1 year, less than 5% return to work
• the cost to the economy of mental ill-health is of the order of £77bn per annum

Comparisons with other major groups of diseases have been carried out in terms of disability-adjusted life years (DALYs). Mental illness has the second highest ranking in terms of global burden of disease; infections ranks first (31% of DALYs) and mental ill-health second (13%). Notably, in Europe mental ill-health accounts for 25% of DALYs and ranks first. Comparative figures for cancer and heart disease are given below.

Disability adjusted life-years

Funding for mental health research: the need for increased funding from charitable sources
Investment in mental health research is small in comparison with the burden of illness, whether considered in terms of personal suffering or in terms of the burden on the economy as a whole. Figures from the Medical Research Council gives an estimate of spend on research by the major public sector funders in four countries:

Spend on health research in the major chronic diseases

MRC: Medical Research Council; NIH: National Institutes of Health; CIHR: Canadian Institute of Health Research; NHMRC: national Health and Medical Research Council

The figure below compares Disability Adjusted Life-Years from various groups of diseases with UK research funding. The mismatch for mental health is striking.

There are many mental health charities in the UK that support people with mental illness and those that care for them. Some of these charities also fund research either carried out in-house or externally, but the amounts of money are relatively small. There is no equivalent of Cancer Research UK, The British Heart Foundation, or Diabetes UK to name just three of the major charities in other disease areas that fund research in the UK.

The need for more research
A strategic analysis of mental health research funding in the UK (Department of Health, 2005) identified some major gaps in research funding - notably, research into the promotion of mental health and wellbeing, research into common mental illnesses such as anxiety disorders, and research into suicide. There is good news in terms of interventions to help people with mental disorders: psychological therapies for common mental health problems are based on good evidence of effectiveness; modern drugs for schizophrenia have also been shown to be effective. Yet there are many other areas that are unexplored. The Sainsbury Centre was commissioned to research the views of service users and carers and other stakeholders as to the research questions that they would like to see answered. They reported in 2006. A report on unanswered questions about schizophrenia is also underway by the James Lind Alliance (www.jameslindlibrary.org).

A new initiative
MHRUK came about because of the enthusiasm of three people: Clair Chilvers, Laura Davidson and John Grace. Professor Clair Chilvers was Director of the Mental Health Portfolio at the Department of Health and since 2007 has been Chair of Nottinghamshire Healthcare NHS Trust, one of the largest providers of mental health services in Western Europe. Barristers John Grace QC and Dr Laura Davidson had independently established contact with some of the leading UK researchers into the causes and treatment of mental illness. A meeting was held at the Wellcome Trust in April 2007 and agreement was reached that Clair, Laura and John would work together on this initiative

Discussion with existing mental health research charities suggested that rather than setting up a new charity to fund mental health research, initially a joint venture with one or more of these charities to raise funding specifically to fund mental health research should be explored. It would engage the considerable expertise in existing charities as well as promoting common interests between them. Rethink has agreed to be a partner in this initiative and a Memorandum of Understanding was signed between the partners. In May work on MHRUK had progressed sufficiently for a decision to be taken to develop unilaterally but to engage with a wider group of mental health charities of which Rethink would be one. The early support of Rethink was a significant factor in getting MHRUK off the ground and the charity continues to be supportive of MHRUK's venture.

In addition, advice has been sought from the following:
Stephen Doochin (NARSAD), Kathleen Duncan (former Director General, LloydsTSB Foundation), Michael Fitzpatrick (NAMI), Hilary Gilfoy (Autism Speaks), Joy Gillett (Australian Rotary Health Research Fund), Pamela Goldberg (Breast Cancer Campaign), Fiona Hare (Garfield Weston Foundation), Victoria Harrison (Wolfson Foundation), Iona Joy (New Philanthropy Capital), Ruth Lesirge (private consultant), Jonathan Naess (Stand to Reason), Glenn Richer (PKF UK LLP) George Szmukler (Institute of Psychiatry), Graham Thornicroft (Institute of Psychiatry) and Pam Waring.

The type of research that would be funded
The research to be funded will initially concentrate on causes, diagnosis of and treatments for mental illness. This will include:

• Laboratory and epidemiological research into the causes of mental health problems, including genetics, environmental factors and their interaction
• Research into treatments for mental health problems
• Research into interventions to prevent mental illness
• Development of research capacity through the funding of PhD and post-doctoral awards

Specific research questions may initially include the Sainsbury Centre Report on service user and carer-centred priorities for research, and from the James Lind Alliance Report (see above).

As a former Director of one of the Department of Health research funding programmes, Clair Chilvers has substantial experience of grant-making. Awards would be made in response mode although at any time broad areas of research might be specified. Funding would be awarded following rigorous peer review and scrutiny by the Scientific Advisory Board.

User and carer involvement
Best practice will be followed to ensure that service users and carers are involved at all stages with the prioritisation of research topics and the commissioning of research. For example:

• Service users and/or carers will be represented on the Scientific Advisory Board
• All research project applications will have to demonstrate that service users and carers have been involved in the development of the proposal
• All research project applications will be peer-reviewed by a service user reviewer as well as academic reviewers

Sources of funding for the feasibility phase
Glenn Richer of PKF (UK) LLP, advised on the development of an initial business plan. In partnership with Rethink successful bids were made to the South London and Maudsley Charitable Trust and to a private family foundation for funding for a market test and plan for fundraising with a report in January 2009. This piece of preliminary work is being carried out by the Management Centre (Judy Beard and Angela Cluff) following a competitive tender.

Governance issues
Rethink’s financial and governance procedures will be followed. Part of the development work during the pump-priming stage will be to determine the governance procedures for the future of the initiative. In the meantime, Mental Health Research UK has been formed as a charitable trust and was registered as a charity in August 2008.

Clair Chilvers
Laura Davidson
John Grace

1 Sources: Layard R; Sainsbury Centre for Mental Health
2 Source: Andlin-Sobocki et al (2005), European Journal of Neurology, 12 (Suppl): 1-17
3 This excludes fellowships.