Global Ministerial Mental Health Summit

From 8 to 10 October 2018 I participated at the Global Ministerial Mental Health Summit in London, UK. Also see https://globalmhsummit.com/home

The title of the event was: Global Ministerial Mental Health Summit – Equality for mental health in the 21 Century.
In this context, the word “Equality” referred only to equality between physical and mental health. Both should be valued equally. There was no deeper meaning to it in this GMH-Summit.

Basically: The group of the Global Mental Health-movement , with its elite psychiatrists, together with pharmaceutical industry, want to scale up their business, and they lobby the politicians, to bring their business all over the world. They see a new market in the global south, with millions of new potential for selling pills and creating institutions. At the GMH-Summit, there was only room for positive stories about the Western model of psychiatry, but not a word was spoken about forced treatments, or the fraud by pharmaceutical industry, the political abuse of psychiatry. They just painted a falsely positive picture to obtain support from the politicians and ministers they had invited, to expand their own business.
(This is a very worrying development obviously. This appears to be how colonization in the 21st century works)

A number of organizations and experts have sent Open Letters to the organizers of this event to criticize the many fundamental errors in this event. Most striking is the large absence of persons with psychosocial disabilities from the global south, while the main purpose of the Global Mental Health agenda is “to scale up mental health services in the global south”. Yet apparently, as the funding form suggests, priority was given to invite ministers, instead of persons representing the groups whose life will actually be affected by these plans. So even before going there, it was already clear that this event was an imperialist lobby, rather than an actual development and human rights based initiative. I was well aware of this and also signed one of the Open Letters.
Open letter 1 https://www.nsun.org.uk/news/global-ministerial-mental-health-summit-open-letter
Open letter 2 https://www.nsun.org.uk/Handlers/Download.ashx?IDMF=3103fcfd-dee4-4aed-a44e-0157f8236362

There is also a news post here: https://www.disabilitynewsservice.com/government-blocked-involvement-of-user-led-groups-in-mental-health-summit/

The group of the Global Mental Health-movement has issued a Lancet Commission report, in which they consider the UN Convention on the Rights of Persons with Disabilities to be a threat to their view on ‘global mental health’ (page 15-16 of the report).
Link to Lancet Commission Report page: https://www.thelancet.com/commissions/global-mental-health

So, this Global Mental Health-group openly questions whether human rights are universal (or just for the lucky and the strong?) And subsequently, they basically claim that there is a group of people who need their services so badly that human rights can be overruled, claiming they should be subjected to the services even against their will. – Note that this claim is not corresponding with the lived experience of people who actually underwent these “services against their will”, and who protest against forced treatments in every corner of the world. Yet nonetheless the Global Mental Health-group gives no further attention to negative lived experiences of their services. (while instead, they could have taken responsibility for the current horrible institutions in the global south, which have often been built according to the flawed Western model example, and which are outrageously horrific , as an extremely bad copy of a bad practice… Millions of people have suffered horrible regimes in the name of psychiatry. This cannot be ignored – yet GMH payed absolutely no attention to this).

The Lancet Commission Report shows that this Global Mental Health –group actually still believes that forced treatment is a solution and not a problem. This means they are still in the old-paradigm, and they don’t classify as innovators who could lead in the implementation of the UN Convention on the Rights of Persons with Disabilities (CRPD).
(Luckily there were a few participants who did have a CRPD-based view, and who understood the fundamental changes that need to be made to move to human rights based practices, yet these were typically not the organizers but critical participants)

As an activist against coercion, I was already horrified by seeing the draft report of the Lancet Commission and the deafening silence on the topic of forced treatments. The GMH-group wants to scale up mental health care services, but without stopping the practice of coercion. This means they indirectly call for the export of solitary confinement, forced medication, restraints, electroshocks, institutions, pathologized diagnoses delinked from social context, and other horrors… It makes me furious. I’m an activist, because I don’t want these things to happen to others, as I have experienced the harm from these things. And I am furious over the fact that the complaints of so many people are not heard, and now even worse: they even want to do MORE of this, to more people! How can the West not learn from their mistakes? How can we, in 2018, still be ignorant to people who actually need help, not coercion. How can anyone think that exporting coercion is doing any good to the world?

The GMH-movement doesn’t distinguish between good and bad practices, and anything could be meant under the term “mental health service” (either isolation cells, or psychotherapy). To me it is impossible to follow that mindset. There is obviously a big difference between confinement and real support.

It was clear from the start that this would be a cold and tough conference. There was a huge elephant in the room, which is the criticism on the Western model. Everyone knows it, but it was taboo. Even my leaflets against the Draft Additional Protocol to the Oviedo Convention got zero attention from the organizers. They were too busy painting a false picture…. So then I actively used the hallways to campaign. It was disappointing that the one point I brought for the agenda (#WithdrawOviedo), didn’t get attention. After all, I had been invited to participate and to contribute, and I had brought a statement that is supported by many organizations, on the urgent need for Ministers to vote against the Council of Europe’s Draft Additional protocol, - it was unpleasant to see that this urgent call wasn’t even mentioned or highlighted by the organizers who had a separate Breakfast meeting with the Ministers. They could have raised attention to the fact that Europe is risking to go wrong on human rights – but they decided to leave the issue out of their agenda. It says a lot about them altogether.

I had been invited by the UK government, who funded only partial travel costs, and I had to spend about 75 pounds for train and metro myself. (in my opinion that is not a proper way of inviting people, and especially insensitive towards my colleagues from non-Western countries. In this way, our work costs money, instead of earning by it to enable more activities. These type of invitations drain NGO budgets, which limits our ability to do other activities – and if this happens without giving a meaningful chance for influencing the whole, it is active disempowerment. They take our time, money and energy, and give us no outcome… The politics behind these events are worth a separate discussion).

Anyway, let me proceed to the report of the actual meeting.

On Monday 8 October 2018 I arrived in the morning at London Stansted, and then by train to London, finding my way to pick up a package of leaflets for the campaign against the Draft Additional Protocol to the Oviedo Convention. (You can find the Handout and more information on the campaign against the Draft Additional protocol at the ENUSP website: http://enusp.org/2018/05/29/draft-additional-protocol-to-the-oviedo-convention-related-materials/ )

Then I explored Camden Town (which I really enjoyed), and then I made a detour to the hotel, because I had mistakenly gone to Kennington instead of Kensington. Many other participants had had a long travel and were resting, so upon arrival in the Holiday Inn hotel, I just had a chat with some other guests and then also went to my room early.

*
On Tuesday 9 October 2018, I got up early to have breakfast with Salam and Matrika, and then went by metro to the venue of the GMH Summit, the County hall, where the registration started at 9 AM.

At 10 AM, the conference was opened by Tim Kendall, who outlined the goal and the scope of the GMH Summit. The summit intends to celebrate “good practices”, and to advocate for more spending on mental health services , in “equality” with physical health. Questions for the plenary session should be sent in advance and would be “filtered” to avoid overlap. The recommendations that would follow from the Workstream-sessions would be presented in a “declaration” to the Ministerial delegations at the Ministerial Breakfast (10 Oct). About 40 ministries were represented in the Ministerial GMH-Summit.

We, participants never saw the declaration which was issued to the ministers. It still seems not public what the declaration entails (!). What did they tell these ministers?? In whose name? Why is the declaration behind closed doors?

The fundamental errors in the organization are countless. This is not a proper way of organizing any service, certainly not health care where people are vulnerable. In my vocabulary, the practice of white collars making business agreements for their own benefit behind closed doors shielded from democracy and at the expense of other people’s human rights, is called corruption.

This “closed door” approach is exactly how GMH, and also big pharma do their business. It is happening right here, right now, and it is done with the money of several Western governments (Alliance of Champions) and other big organizations (WHO, OECD). It cannot be ignored, and it cannot be tolerated. Corruption must be banned. We must demand democratic and transparent processes.

After the opening by Tim Kendall, there was a word of welcome by Steve Brine, Parliamentary Under Secretary of State for Public Health and Primary Care, UK. He painted a frightening picture of the “economic burden” of mental health problems, and subsequently he glorified the “economic benefits” of scaling up mental health services. This seemed to be the tone of the entire event.

At 10.30, the first speaker was Arthur Evans from the American Psychiatric Association (APA), who spoke about innovative practices. He actually had said some interesting things e.g. on the recovery framework (to my surprise, since I didn’t have any high expectations of this event). Yet he did ignore the issue of human rights violations which take place under the name of mental health care worldwide, and to me that is unethical per definition. It cannot be ignored. It absolutely cannot be ignored…. Especially not when talking about “scaling up”. The amount of ignorance was mindblowing. Should I ask them “who cares?”

At 11 AM, there was a session of 6 smaller groups, called Workstreams Part 1, to which participants were assigned, and which had a number of short presentations and some time for questions. I was assigned to the Workstream 6: Mental Health Services Around the World.

The first presentation was by David Clark of NHS England on Improving Access to Psychological Therapies (IAPT). His point was to reduce the “burden of disease” by scaling up services…

Then Phiona Koyet, Mental Health and Psychosocial Support Technical Advisor, World Vision International, Kenya, spoke about the programme Problem Management Plus (PM+) which is based on training Community Health Volunteers who can identify basic individual needs in the community. (This is an innovative scale up of community based support – and it was refreshing to hear something different)

Then Soumitra Pathare of Center for Mental Health Law and Policy, Indian Law Society and Janki Patel, WHO Quality Rights Gujarat spoke about promoting quality and human rights in mental health care services. They spoke about the many benefits of using WHO Quality Rights monitoring tool, which had led to concrete improvements, as well as empowerment of users, including as Peer Support Volunteers. Janki shared her personal testimony. It was a message of hope.

Julia Lappin, School of Psychiatry, Australia spoke about Keeping the body in mind, and she highlighted the risk of developing physical health problems and a shortened lifespan by 20-30 years. She stressed the need for lifestyle intervention (e.g. on weight and smoking). She linked the cardio-metabolic health risks to lifestyle, and not to the psychiatric medication, while numerous resources have already exposed it is actually the psychiatric medication that harms the cardio-metabolic balance. (It doesn’t even need an expert-eye to see that psychiatric medication harms the body).
Yet apparently, questioning the medication itself also was not a point of discussion in this Summit….

Then Dita Protopopova, Ministry of Health, Czech Republic spoke about the current national programme of mental health care reform by the Czech government, where it is establishing 30 new mental health centres across the country, and a transformation of psychiatric hospitals.(It is positive that changes are started for de-institutionalization).

Then Yuri Cutipe, Director of Mental Health Department in Ministry of Health, Peru, spoke about the law reform process of Peru (Law 29889), which included establishment of 35 Community Mental Health Centres to increase ‘care coverage’ of persons in the community, which is central to implementing WHO Mental Health Action Plan 2013-2020.
(it was unclear what type of support or service was provided through this system, and it matters a lot whether it is based on the will and preferences of the persons concerned).

To me it is clear that support is supposed to benefit the person concerned, and mechanisms for social control cannot be conflated with mental health care. Psychiatry must break away from the past mistakes, and focus on the wellbeing of its users.

The agenda of the World Health Organization to “close the treatment gap” and increasing the “care coverage”, seems to have been hijacked by a certain elitarian group of service-providers, such as the GMH-group, who operate behind closed doors, and who are scaling up services without distinguishing whether a service is harmful or helpful, and who avoid democracy. It is time to raise an alarm! This is not the development that we want!

Directly after lunch, there was a plenary session where author Matt Haig was interviewed by Sue Baker, director of Time to Change. Matt Haig’s work is inspired and based on lived experience. It was nice to hear more about his creative writings.

After this session, there was Part 2 of the Workstream-session, which comprised the discussion. I was again in the workstream on Mental Health Services Around the World.

At the start of the session, Dainius Puras, UN Special Rapporteur on the Right to Health explained that mental health care needs a paradigm shift, and address the power asymmetry, and reflect on outdated practices. He mentioned his report: A/HRC/35/21 http://www.un.org/en/ga/search/view_doc.asp?symbol=A/HRC/35/21

Then the participants sat in 4 smaller groups to discuss an already prepared list with recommendations (prepared by the GMH-organizers). We were asked to give feedback. The list contained recommendations regarding the availability of various services, - again not a word on forced treatments / forced placements / guardianship etc. (Like the millions in appalling conditions in their profession do not even exist???)

Another point of concern is that the list of recommendations mentioned the availability of “essential medicines for mental health conditions”, which is claimed to reduce the treatment “gap” and increase treatment compliance. (The entire phrasing is again suggestive, and not backed with reliable evidence, neither on the needs of people, nor on the claimed effectiveness of pharmaceutical interventions). The benefits and harmfulness of medication needs to be investigated properly (independently and unbiased) before making any decisions on scaling up. We cannot put people at risk with harmful treatments. That mistake has been made once. It cannot happen again. We must learn from the mistakes that were made. GMH and Lancet Commission have lost their credibility, since they operate recklessly, and only seem interested in expanding their psychiatric imperium. We live in the era of the UN CRPD, and the GMH/Lancet Commission business is simply not interesting anymore. They are not the innovators, they are the conservatives. We don’t need them. We need a new generation to lead us to a life with human rights for all.

As a first point in the session, I wanted to bring up the topic of forced treatments which cannot be ignored, and it has to be included in the global ministerial agenda and recommendations. I mentioned the European campaign against the Council of Europe’s Draft Additional Protocol to the Oviedo Convention, where Europe aims to organize forced treatments while the UN Convention on the Rights of Persons with Disabilities (UN CRPD) calls for abolition of forced treatments. The global movement should call to uphold to highest standard of human rights, which is the UN CRPD.
I suggested that this point should be added on the list of recommendations. I spoke with emotion, and I felt like my message wasn’t understood. I wanted to hear a reply. Again I showed emotion. The meeting went on, and someone tapped me on my arm and said “I can see you are upset, do you maybe want to go to the quiet room, or maybe have some mental health support?”. – Unfortunately, the offer of a quiet room triggered me hugely, as a seclusion-survivor. A quiet room … it brought up horrible feelings automatically, and I reacted with fear and resistance, and I walked out, overwhelmed with many emotions. I just needed to go outside to calm down with a cigarette. I knew that my firm reaction to an offer with good intentions was probably not understood. In hindsight I realized why the offer of going to the quiet room had upset me so much. I also can see it was a well meant offer, with good intentions. Yet it was just exactly the wrong offer to make to me, with my past of long term solitary confinement (about 2 years long). I really don’t get any calmer by the idea of going to a quiet room… I actually just wanted to be heard…

I came back in when the emotions had reduced. It felt a bit awkward. The session was still ongoing, and the 4 discussion groups were presenting their recommendations to the workstream as a whole. I had missed most of the actual discussion part. I really regretted that. Some interesting critical voices were there too.
There was no clear outcome of the workstream, except the list of recommendations which was further compiled behind closed doors, and which we as participants never saw again. (It is very unclear whether any participant had any influence actually).

After another refreshment break, at 16.30 there was a Question and Answer session on the themes of the Summit. In this session Michael Njenga, USP Kenya, openly questioned whether Kenya would need more psychiatrists, medicalization or coercion, mentioning that there is a fear to import bad practices. He spoke about using local resources and creating a support system that involves the local structures in the community, such as working with faith based healers.

Other speakers were: Poorna, who spoke about preventable deaths by suicide.
Sanchana, who spoke about lack of awareness on mental health in India, and misinterpretation as disobedience, which has consequences for attitudes.
Simon, who mentioned that raising awareness may lead to a greater identification and a greater demand for support, yet often services are not available (or reduced), leading to an increased treatment gap which must be addressed.

The moderator then held a small discussion on which country would be the best example in the world for mental health care, and it was pretty naïve of the organizers to mainly come up with Western countries, and eventually Bhutan…

I felt angry about this. We know that the Western countries could actually realize the UN CRPD if there would be a political will to ban coercion from health care, and to establish respectful supportive practices. Yet each of the Western countries keeps on embracing forced treatments and prioritizing social control over actual care (probably partially influenced by the lobby of GMH/ Lancet Commission-group, and European fear-based politics etc.).
The Western model of locking people up in institutions is already horrible in Europe, but it is even more horrible in poorer countries who got an appalling copy of this system, with large scale imprisonment, chaining, electroshocks. “Treated worse than animals” as Human Rights Watch righteously calls it. The mistake of being misguided by Western practices cannot happen again. Alarm must be raised to stop the export of more human rights violations! GMH-group must be stopped from exporting harmful practices. There must be clear ethical codes defining what can and cannot be practiced under the name of mental health care and development.
Tying a person to a bed or a tree is for example unacceptable in 21 Century.
It’s time to organize real care, instead of coercion.

At 18.00 there were closing remarks by Richard Curtis, who then asked us to go to the London Eye Pier to join on a boat trip to see the Tower Bridge, and then to the Tate Modern, Blavatnik Building where we had a reception with drinks and some nice bites. After the reception, I walked with Matrika and Salam to the metro station, and we made our way back to the hotel in Kensington.

It had been a long and interesting day. Later in the evening I wrote a letter to Tim Kendall, once more asking him to address the problem of the Draft Additional Protocol with the Ministers in the Breakfast meeting, and/or in a plenary session. There has been zero response to this request.

*
On Wednesday 10 October 2018, World Mental Health Day, the second day of the Global Ministerial Mental Health Summit took place. After another breakfast with Matrika and Salam, we went to the Summit-venue together.

About 40 ministries were represented in the Ministerial GMH-Summit, and they were presented a declaration from the GMH- Summit at the Breakfast with Ministers (closed session before the Summit started). We, participants never saw the declaration (which is still not public). This is disappointing, since it excludes us, participants, from having a meaningful dialogue with the ministerial delegations on the relevant topics and recommendations. We were actually sidelined, while the organizers claim to speak for a broad movement. They surely do not speak in my name. I wonder who they actually represent? (besides the 28 people who made the Lancet Commission Report?)

Since there were more ministerial delegations present than yesterday, I intensified my lobby against the Draft Additional Protocol to the Oviedo Convention. I was advised to look for certain pins on the jackets, which would identify the ministers. That was a really helpful advise. Many people seemed curious to what I was spreading, and wanted to have a leaflet.

At 10 AM, the Global Ministerial Mental Health Summit, day 2, was opened by Mat Hancock, Secretary of State, UK Department of Health and Social Care, who mentioned that the UK has set mental health as a priority on the political agenda, and is making substantial investments in the programme “every mind matters”.

Mike Pearson, OECD, mentioned that mental health is also included on the global agenda. He said: “Mental health care is the worst part of health care, and if this can be addressed, it will pay off”.

Svetlana Axelrod, Assistant Director General WHO, highlighted that mental health has always been in the shadows of the physical health, and overlooked and neglected, with a lack of services, or inadequate services, such as poor hospitals which violate human rights and where no adequate treatment is provided, but instead there is isolation and seclusion, or where people can be held infinitely. It is necessary to invest in quality mental health care. This is a momentum and there is no turn back.

Then, we were shown a video made by Time to Change: https://www.youtube.com/watch?v=JV7Qn_aYK30

At 11 AM there was a session on the Lancet Commission Launch, moderated by Richard Horton, Editor-In-Chief The Lancet.

Vikram Patel, Joint Lead Editor Lancet Commission, presented the Lancet Commission Report with was launched today at World Mental Health Day, and he stated that there was a “growing burden of mental illness on society” and hence a need to scale up mental health services (which is coincidentally his core business). He ended his contribution by saying “There will always be people with different views” (seemingly he was not even trying to pay attention to any criticism).

Helen Herrman, Lancet Commissioner and President of the World Psychiatric Association (WPA) spoke about how psychiatry has “alienated” over the years from the medical profession, and that mental and physical health should be connected as much as possible, with again “more access to treatment” as a key message (and it sounded like a poor joke when she said “professionals are tied up in the poor hospitals” – not a single word about how subjected users all over the world are tied up…. It was actually painful).

Charlene Sunkel, Lancet Commissioner and person with lived experience, spoke about the hope she had for good quality services to be available with a focus on recovery and a human rights based approach. Mental health should not be a gateway for the deprivation of rights, but it should support and enable living with dignity, and enjoying employment and education etc. Stigma must be broken.

Grace Gatera, Young leaders for the Lancet Commission, spoke about her personal experience of living in Rwanda and Uganda, which illustrated that mental health is a topic for young people too, and young people should lead in action and development.

After a refreshment break, at 12.20 there were Closing remarks by Ginette Petitpas Taylor, Minister of Health Canada

This was followed by Ministerial Reflections on the recommendations, with contributions from:
Rajitha Senaratne, Minister of Health, Sri Lanka
Emmanual Osagie Ehanire, Minister of State for Health, Nigeria
Upendra Yadav, Minister for Health and Deputy Prime Minister, Nepal
Bent Hoie, Minister for Health and Care Services, Norway
Svandis Svavarsdottir, Minister for Health, Iceland
Tina Mensa, Minister for Health, Ghana

They all stated commitment to various topics. (see the video of the closing session at https://globalmhsummit.com/home )

More Closing Remarks were made by Birgitta Tazelaar, Deputy Director-General for International Cooperation The Netherlands Ministry of Foreign Affairs, who announced that the next GMH Summit will be held in Amsterdam, the Netherlands in October 2019. The theme will be humanitarian and emergency situations, where the “treatment gap” is generally around 90%.
(To me it seems inappropriate to define this topic in a country that itself doesn’t have to deal with such tragedies, and it is obviously a supply-based approach, instead of a demand-based approach, which is not the right basis to start with – Apart from the fact that the Netherlands is not an example to be followed when it comes to mental health services beyond the milder support needs, because in many cases the routine approach is detention and medication, as is the case in many countries. No innovative approaches, and no CRPD-informed basis. So I don’t see the reason why this conference should come to the Netherlands, similar to the criticism of having the UK as a host)

The final speaker was Simon Stevens, of UK NHS who shared some summarizing remarks,

The conference ended with another lunch buffet. I spread the remaining handouts, and I managed to reach a number of ministerial delegation, who all should be informed on the risk for a European error in the form of the Draft Additional Protocol to the Oviedo Convention. They should also be informed of the risk of scaling up services without banning human rights violations.

After lunch, I left with the metro and the train, back to Stansted airport (luckily this time I wasn’t taken to the private search cabin, which had scared me a lot some years ago, and has made me fearful of travelling via Stansted. This was the first time to go there again, and I was very happy that it all went well. I actually had a really cosy flight, and some nice chats with other passengers in the lines).

I was exhausted when I came home, and also angry about the fact that the GMH-group isn’t taking any action, not even spending one word, on the crucial issue of forced treatments and gross human rights violations done to vulnerable people worldwide in the name of mental health care. They invited me to contribute. I tried to raise 1 point, backed by many other organizations (#WithdrawOviedo), and it was ignored. I spent 75 pounds, and I feel hurt, because I feel ignored once again, and powerless towards the harm I hope to prevent for others.

My generation has suffered horrible practices under the disguise of mental health care, but we can prevent this for others. If we all decide that we really want to do better, we actually can do better.
The first step is to reject to continue with bad practices. We need an end to coercion, limit the influence of pharma, and we need a fair, democratic, CRPD-based and transparent development trajectory to enable good quality of support for every human being everywhere.
Another world is possible!