As usual I felt underdressed as I stepped into County Hall in London for the Global Ministerial Mental Health Summit, on October 9-10th 2018. You would be lucky to get biscuits at most meetings about mental health in the UK, but the Summit was a shiny affair, with delegates made up of commissioners and ministers, people with lived experiences, celebrities, professionals and industry folks (even the Royals popped in to say hello, although not to me!).
Despite the glamour and excellent snacks, there were some uncomfortable moments at the Summit. It was ironic to listen to a range of UK Government minsters talk about the importance of mental health whilst sat in a room just over the river from Westminster, where governmental decisions to cut welfare, and sanction and impoverish disabled welfare claimants has so detrimentally impacted people’s mental health and led to suicide. It felt like arrogance on the part of the UK Government to position themselves as world leaders in mental health when in 2016, the UN found that the Government’s austerity policies had enacted ‘grave’ and ‘systematic violations of the rights of persons with disabilities’ . It was equally jarring, given the cuts to social security under austerity, to be transported by boat about 2 minutes away, to an evening drinks reception at the Tate gallery.
But the Summit didn’t go without critique, with both the National Survivor and User Network (NSUN) and Shaping our Lives producing open letters with multiple signatories , raising a multitude of concerns about the Summit, from lack of involvement of people with lived experiences in its organisation, to the problematic exporting of institutionally racist and medicalised models of mental health care worldwide.
The second day of the Summit set the scene for the launch of the Lancet Commission on Global Mental Health and Sustainable Development. Prior to its official launch, the Commission report had already had a varied social life, circulating officially and unofficially in and out of inboxes. This wide circulation is interesting for an 88 page document that was headed and branded on every page in bold capitals with ‘NOT FOR CIRCULATION’ and ‘STRICTLY CONFIDENTIAL’. I should say that I have been researching global mental health for a number of years, and I know some of the authors of the Report which itself is a product of well-intentioned hard work. The authors, alongside other GMH advocates, have shunted mental health onto the global health and development agenda, against much resistance by local Government and general indifference. Whether or not we all agree with the way this has been achieved, it has meant there is now generally more funding available for certain kinds of research into mental health and that mental health is being taken more seriously. But, just as with a friend you know well but who exasperates you at times, I write the below in a spirit of starting conversations – to critique but not to write off.
Another reason for my sighs at the Summit was the positioning of the Lancet Commission as making a radical step in ‘reframing mental health’ through including evidence on social determinants and promoting a partnership model that includes those with lived experience. While these things may be new and radical for the professionals involved in the Movement for Global Mental Health, and while I enormously welcome that these issues are being discussed, these things are not new to mental health users and survivors, and social scientists, who have been doing this work for a long time. If I wanted to do a big epidemiological survey of mental disorder, I would like to think I would ask people who have done them before for advice. I wouldn’t necessarily feel I had to invent diagnostic categories and then formulate statistical modelling techniques from scratch. So why is learning from those who have expertise in user involvement and leadership, or working in interdisciplinary partnerships, any different?
The report twice mentions ‘Nothing about us without us’, and emphasizes ‘patient involvement’, ‘consumer-led interventions’ and ‘consultation, collaboration and patient-controlled initiatives’; and points to the importance of ‘mobilization of the voices of people with the lived experience of mental disorders’. Yet how or whether people with lived experiences were involved in co-authoring the report, collaborated with in decision-making about its development, or were consulted, remains unmentioned and unclear (although I contacted one of the authors and they confirmed that one of the authors has experience of service use, and there was no open consultation on the development of the Report). There are (to my knowledge) hardly any references within the report to user or survivor-produced knowledge, nor any acknowledgement of how rich this area of research is, with its development of innovative methodologies and impact. Here the devaluing of user knowledge, so apparent in the meagre funding dedicated to this kind of research worldwide when compared to more medically-oriented research, is perpetuated in the way the Report is produced and performed, despite intentions otherwise in its message. Yet global mental health advocates could learn a lot from user and survivor research, particularly the involvement of those with lived experience in decision-making, design and dissemination.
Two of the key things central to framing mental health as a global health and development priority (and much repeated throughout the Summit) are metrics calculating the contribution of mental disorder to the global burden of disease; and the cost of mental disorder to the economy. Both of these sets of calculations frame mental disorder as a ‘burden’. Highlighting the economic burden of mental disorder is likely to be an effective strategy in getting increased attention and resources channeled into mental health – this is what politicians and ministers listen to. Yet this comes with many problems. The Human Rights Council has warned that the ‘use of alarming statistics’ that are heavily biomedical and overly focused on ‘treating individual conditions’, risk paving ‘the way for further medicalization of global mental health’. Burden metrics also assume that mental health conditions are inherently disabling and diverts attention from the way many ‘treatments’ for mental disorder impair and disable people. It ties disability and value to engagement in paid ‘productive’ work, despite work being a key reason for many people’s distress. It locates stigma individually and may even worsen it by drawing attention to the economic cost of psychosocial disability. There is a further risk that framing mental disorder as a burden risks framing people who experience distress as burdens. Accounts from people with lived experience and families of those effected by welfare reform in the UK show that fear of being seen as a burden (due to an intensive governmental and media campaign casting welfare claimants a ‘scroungers’) was an important factor contributing to suicide.
Even the most well-intentioned mobilizations around ‘burden’ risk evoking oppressive practices of sanism, disablism and ableism that denigrate people with psychosocial disabilities for being a ‘burden’ – a person who is costly and isn’t seen to productively contribute to society. On p.18 of the Report, there is a brief discussion about Nazi Germany and Aktion T4 – the development of the gas chambers for killing psychiatric patients and disabled people. A key fact not mentioned in the Report and yet important is that the construction of people with mental illness and disabled people as costly burdens was key to the Nazi justification to eliminate these groups (and central in eugenic arguments over the following years) and was even framed as a positive economic strategy. Here is where the well-intentioned and likely successful strategy of talking about mental health in economic terms as a ‘burden’ urges caution and would benefit from a complete rethinking that values the lives of those with psychosocial disability and recognizes the ways structural factors disable people.
In launching the Commission, Vikram Patel made clear that ‘there’s no way a single report by 28 people can include every perspective’, and that the commissioners aimed to recognise differences in point of views and encourage criticality. I think this is great. But it would have been even better if these different perspectives could have been engaged with in the writing of this Report. ‘Deeds not words’ is the slogan often used and much tweeted in relation to mental health, and it applies here too – to both the organisation of the Summit and the writing of the Lancet Commission. Both need to enact the principles they espouse and engage with individuals and groups who have long been radically reframing mental health.