#MHForAll Webinar: Putting Psychoses on the Global Mental Health Agenda
Chair
Mark van Ommeren, WHO (Chair)
Panellists
Craig Morgan, Co-Director of the Centre for Society and Mental Health at King’s College London
Rangaswamy Thara, Vice Chairperson at Schizophrenia Research Foundation
Soumitra Pathare, Director of the Centre for Mental Health Law & Policy
Ying Ying Lee, Research Officer at the Institute of Mental Health, Singapore
Mark van Ommeren
Welcome to this webinar on the Lancet Psychiatry Commission on Psychoses in Global Context. Psychosis is not very visible in the global mental health discussion, which is actually quite surprising, as governments tend to think that psychosis should be a priority and their budgets tend to be allocated to this. More than blindness or any condition, chronic schizophrenia is a huge vulnerability created by psychosis. But the majority of research is mainly from Western countries, and most does not directly involve people with lived experience.
This Lancet Psychiatry Commission aims to raise the profile of psychosis to ensure better policy, research and development in this area. Today we’ll learn more about the Commission from four of the key people involved in this work.
My first question is what are the aims of the Lancet Psychiatry Commission on Psychoses in the global context and why is it relevant?
Craig Morgan
This webinar is about raising awareness about the Commission, but also involving as many people as possible. We want to hear from people with lived experience in particular.
The commission has 5 aims
To produce a definitive summary of psychosis, the ways in which it manifests and the risks that might contribute to comorbidities etc.
To identify the gaps in knowledge from a global perspective
To highlight the neglect of psychosis in investment and policy reform
To set out a roadmap for funders and policy makers to address key challenges
To issue a call to action to influence stakeholders and make psychosis a priority
There are several reasons why this matters. Psychosis affects more than 20 million people, and is associated with human rights violations, poverty, homelessness, marked inequities, an under-resourcing of response, and a lack of care. To date the plight of those living with psychosis, particularly in low resource settings, has been relatively neglected. As a consequence we lack the evidence base, public profile and movement for change. Direct experience of those with lived experience is also lacking.
We need to raise the profile of those living with psychosis globally, and that is our main purpose.
Mark van Ommeren
How will you be integrating lived experience perspectives in the work of the Commission?
Ying Ying Lee
As Craig mentioned, lived experience involvement is often missing. In another recent commission with 28 commissioners, only one was a service user. The ethos of “nothing about us without us” is still not always upheld.
That’s why the commission has put together a group of those with lived experience and family members of those with lived experience, so although we don’t have representation from everyone all over the world, we do have a wide geographical spread. We all come with lived experience, and as a team we work to integrate our lived experience into the work of the Commission. We aim to give a voice by running systematic reviews, looking at the status of participation, and through a qualitative review of literature from the global south. Generally in research there is a high representation from the UK, US and Australia, but not from other regions.
We are also giving inputs based on lived experience and professional expertise. We also hope to conduct focus groups in various regions to understand priorities of those with lived experience of psychosis.
Mark van Ommeren
How is the Commission aiming to improve the lives of people with lived experience and their families?
Rangaswamy Thara
The word “life” is very broad, incorporating social, economic, medical and many other factors. We’ve been working closely with those with lived experience of psychosis in India for many years. The needs of those in urban and non urban areas are very different. This is true of many areas with different literacy levels and socio-economic development. If you speak to those in rural areas, for example, and ask them what they want, there are only 2 responses. “I want to get better”, and “I want to be able to take up a job and look after my family”.
We need to be aware of this when working with these people. We are only seeing the more literate and articulate people, but there are many others who also need help and intervention. This will certainly lay a foundation for our further work.
Mark van Ommeren
There is a plurality of views, and this is critical to understand.
Soumitra, you have been heavily involved in work promoting the human rights of people with psychosocial disabilities, what outcomes do you expect from the Commission in this area?
Soumitra Pathare
What I would like to see would be for the Commission to promote social inclusion of all kinds. Social inclusion begins at home. Those with lived experience have been actively involved in this whole process of producing the report, so it’s not merely a tokenistic representation. And what will inclusion do for people? The need for treatment is key. Social inclusion would result in access to better quality treatment, which actually enables people to live fulfilling lives. We need to take into account intersectionalities, and what living with psychosis means for different people living in different settings.
Social exclusion puts people’s lives at risk. We know that schizophrenia is associated with higher risk of COVID-19 related death, yet so many people are not prioritising those with psychosis for vaccination. Some even spoke about having them excluded. A letter has already been published urging governments to prioritise this group.
Proper social inclusion is a matter of life or death for many people.
Mark van Ommeren
What are the contributions that the Commission is aiming to make to user/lived experience initiatives?
Ying Ying Lee
There is a need to have more participants involved in the commission, through inclusion through all stages of the work. For the systematic reviews we’re looking for user participation and for qualitative research we are calling out for papers from different countries that may otherwise fall through the cracks in traditional research and methodology. We are trying to increase our language capacity, for example in Spanish, Portuguese, Chinese and even Arabic. We are also trying to build the research capacity of those with lived experience. Often it’s difficult to include non-academics in research due to the perceived lack of skills in this area, so we are organising workshops and capacity building tools to further this inclusion. This is still in the planning phase, but we’re starting out on this.
Mark van Ommeren
What do you expect the role of the Commission to be in influencing law and policy?
Soumitra Pathare
I’m hoping that we will have a significant role in actually shifting the emphasis of law and policy in countries that have largely been around involuntary treatment and hospitalisation to a broader perspective. We need to address structural discrimination. As mental health professionals we are also partly responsible for the kind of picture that has been created in the law and policy sphere, and it’s time we work on that.
It starts with voting. The presumption is that people living with psychosis will not be allowed or able to vote. Also in many countries discriminatory policies persist, relating to employment, for example. And ideas around marriage and family are important. Schizophrenia is specified as a grounds for divorce in some countries, where you can lose custody of a child as a result. The health sector is one part of the discussion, but it reaches much further than that.
We should be asking how we can enable people with psychosis to do things they are not currently able to do, not holding them back.
Mark van Ommeren
What are the challenges in improving systems of care for people with psychosis? How can the Commission contribute to this?
Rangaswamy Thara
The WHO brought out the Mental Health Atlas that described resources for mental health care, not just psychosis, in all countries. In the second and third editions I find that not much actually changed. We need to address the low prioritisation of mental health in government funding, which is always at the bottom of the agenda.
The other important aspect is that very often, such as in India, health is a state subject and not a federal subject. So each state has its own policies, and there is no uniformity. Another issue is that when we train mental health professionals (doctors, psychologists or social workers etc.) we are happy to just talk about the biomedical model and they are happy to accept this. But equal emphasis should be given to the psychosocial model. During training we need to build an understanding of these other factors.
Mark van Ommeren
What concrete actions do you expect to come out of the Commission?
Craig Morgan
It goes back to the aims of what we’re trying to do. Part of this is to understand the current landscape in such a way that we can identify where there are gaps and forefront these issues. These relate to issues of injustice, social inequality and so on.
In terms of getting to that point, the first step is to produce a summary of the evidence that highlights the gaps and key challenges that there are in addressing these inequalities. This provides the basis for addressing these gaps for policy makers and researchers.
This is a call to action, to create a set of materials and advocacy events targeted at influencing international and national policy. In terms of concrete actions, we want policy changes. We’re imagining that this Commision is something that will continue to reflect the needs and changes required. The report will be a starting point as we continue to work on this and continue to advocate. More specific actions will emerge from this work.
Mark van Ommeren
We should look at the challenges and problems of those with psychosis in a pluralistic way. We have to apply a variety of lenses to the challenge of psychosis. If we do this well then that can be a template for other areas of health and mental health.
Turning to questions from the audience, how can we fast track the issue of dealing with systematic stigma towards those with severe mental illness or psychosis?
Soumitra Pathare
The best way to deal with stigma is to deal with discirimation. To reduce stigma we need to improve contact with those being stigmatized. And the best way to increase contact with these people is to reduce discrimination, for example in the workplace.
Stigma is an attitudinal concept, discrimination is behavioural. We can measure and monitor this. The race movement, the gender movement, both focused on discrimination rather than stigma, and that’s how they made progress.
Mark van Ommeren
Now we have another question from the audience - in my city our beneficiaries have several complex disadvantages and use drugs and alcohol that induce psychosis, and subsequently get turned away from support. They fall through the cracks as a result. What can be done about this?
Rangaswamy Thara
In India, at a healthcare level I don’t think there is a differentiation between psychosis and a comorbidity of psychosis caused by substance use. Everyone is taken in and cared for, although the level of care might be different and the involvement of friends and family might be different. But I am aware of many instances similar to those outlined in this question.
Mark van Ommeren
This is what is great about this Commission - it is global and therefore we can bring in different perspectives and learn from different contexts and experiences. Some countries will be further ahead than others in different aspects of psychosis policy and practise.
How can people contribute to the work that you are describing on bringing in lived experience?
Ying Ying Lee
We have a website that is a work in progress, but can be found here. There are links for papers and so on in the resources section. There’s also a contact formwhere you can write in and let us know your areas of expertise and lived experience. We’re also very mindful that there are lots of people out there globally and only a handful of us, so we will try our best to respond to requests!
One thing I forgot to mention was the importance of having resources in multiple languages available to all. This could also be an area where we need help from participants of the webinar and beyond.
Mark van Ommeren
How can research better reflect the diversity of lived realities of those living with psychosis?
Craig Morgan
Returning first to the earlier question relating to substance use, we often focus on individual symptoms without thinking about the totality of experience. This reflects how services are subsequently structured - often focused around symptoms. This means individuals do not necessarily fit into the correct category or box, and subsequently fall through gaps. We should think about how we structure health systems in order to address this.
In terms of research and how we can incorporate the diversity of lived experience, we must broaden the scope. Much of what we know comes from HICs, and ignores lived experience. We need integration, and a transformation of the way that research is currently done when it comes to psychosis. The balance is currently completely distorted, which the commission is hoping to change.
Mark van Ommeren
What is your main hope for the Commission?
Ying Ying Lee
Saying yes to more user involvement globally. We need a collective voice.
Soumitra Pathare
Language shapes our thinking. My hope for this particular webinar is that we should stop referring to schizophrenic patients or schizophrenic people, and start talking about people living with schizophrenia.
Craig Morgan
My hope is to highlight the gross inequalities and injustice. And I hope for a catalyst for change, and more humane and equitable services.
Mark van Ommeren
Thank you to everyone for joining today. Please continue the discussion on social media, and thank you to the Commission for this hugely important work.
