Many thanks to Claire Powell, Eoin Kelly, Ruth Forrest, Dr Rachel Freeth, Nicky Forsythe, and Janice for sharing their notes and reflections from the day which form the main part of this document. Huge thanks to Gavin Bushe, Mark Evans, Samantha Hunt, Eoin Kelly and Claire Powell, for volunteering their time to help us run the event.
Initial conference notes by Claire Powell. Photos by Cheryl Prax.
1) Jacqui Dillon – Introduction
Jacqui opened the day by describing the Hearing Voices approach and giving a brief history of the movement. She highlighted that this is a different approach to expertise that emphasises mutual respect. The core message is that voice hearing is a meaningful experience with diverse explanations. We heard about the 180 groups in the UK and the many countries with groups that are part of Intervoice. She then asked participants to consider joining HVN and introduced the day.
Download: Jacqui’s Presentation
2) Rachel Waddingham – Introduction
Rachel called for sharing ideas around mental distress and social exclusion. She said that today was about asking questions and discovering what we can do together. She also admitted that the name of the conference may have been ‘borrowed’!
Opening Presentation by Joanna Moncrieff
“Where are we now and what needs to change”
Joanna opened with a quote by Moore and questioned the notion of ‘objective’ statements which in fact uphold the status quo. She described the increases in prescription medications and diagnoses, including for children, and showed that there was no parallel increase in outcomes. In fact there are now more admissions and CTOs and an increase in benefit claims for mental health.
She stressed the rate of tardive dyskinesia (4-5%) and that the associated cognitive deterioration is not widely known. Whilst there is increased awareness of the harm of drugs, the effects are suppressed by psychiatry as they try to link these with diagnoses. She said there is in fact an ‘epidemic of drug treatment’ due to the diseased centre model which assumes that drugs correct abnormal brain states.
Joanna called for a drug-centred model which puts the focus on the drugs creating an abnormal brain state which may or may not be useful to people. She called attention to the fact that there is no evidence now or in the past for how drugs work (including ‘anti-depressants’, ‘anti-psychotics’, mood stabilisers etc) and that this is due to the agenda of powerful groups. She also pointed out that placebo controlled trials are also more problematic as a way of collecting evidence. She highlighted that compulsory medication legal controls as it is in fact a form of social control.
Download: Joanna’s presentation
The first ‘marketplace’ for sharing information from allies and organisations with similar aims and objectives:
- Social Work Action Network (SWAN): Talked about their mental health charter and related campaign in the Guardian against compulsory IAPT.
- PODS (Positive Outcomes for Dissociative Survivors): Described their service including support and information.
- Spiritual Crisis Network (SPN): Katie Mottram explained that SPN support understanding experiences through spirituality and highlighted that in Brazil, where there is a more holistic understanding of distress, there is a 90% success rate. ‘Psychiatry should not be the reality police’
- “Only Us” Campaign: Mirabai Swingler talked about her ‘Only Us’ campaign which encourages professionals to acknowledge their lived experience. ‘Remember you are a human’
- Peer Supported Open Dialogue: Dr Lauren Gavaghan described the RCT across four trusts which is aiming for organisational change and having a new ‘way of treatment’.
- FEEL (Friends of East End Loonies): Briefly introduced themselves, described some of their recent activities and invited people to their monthly meetings in Tower Hamlets.
Soundbite #1: Liam T Kirk, Speak Out Against Psychiatry
“Mental health ‘treatment’ as a human rights issue”
Liam talked about his involvement with SOAP (Speak out Against Psychiatry) and his expertise by experience. Described his childhood experiences and then introduced the Human Rights Act – article 8 ‘right to respect for private and family life’.
A space for networking, meeting new allies and grabbing some caffeine or fruit tea.
As is often the case at these events, we took full advantage of the coffee break to talk with one another, check out the stalls and share our perspective on the morning’s proceedings.
Soundbite #2: Rachel Waddingham, HVN & ISPS UK
“The Human Rights Act: What does it mean for us?”
Rachel pointed out the irony of being in Amnesty International, without any representatives being there (despite being invited). This is a sign of how mental health is overlooked in mainstream considerations of Human Rights. She then highlighted the relevant sections of the ECHR and pointed out which aspects of the mental health system infringe these rights. She concluded that this was able to happen because of the medicalisation of distress.
Download: Rai’s presentation
Presentation by Molly Carroll
“Man’s Handmade Scalpels”
Molly began by explaining that she wanted to join up individual healing with the collective and she was going to talk about three instruments that are used to oppress and traumatise.
The first was the removal of agency and self-determination. She pointed out the similarities between diagnoses, treatment and medication with racism and how the civil rights movement fought against this. The second tool was disbelief, denial and decontextualisation. She highlighted Atos and benefit sanctions and the systemic denial of sexual violence. Finally she talked about victim blaming and focussed on the idea of ‘benefit scroungers’ and how that fits in with the neoliberal agenda. The second part was about resistance and the feedback session included ideas around returning meds, using humour and ridicule, living ‘as if’ and protest.
Download: Molly’s presentation
The second ‘marketplace’ for sharing information from allies and organisations with similar aims and objectives:
- ISPS UK (International Society for Psychological and Social Approaches): Jen Kilyon described the work of ISPS UK which aims to create dialogue about different perspectives on psychosis.
- Council Evidenced Based Psychiatry (CEP): James Davies from CEP talked about their work collecting evidence that the domination of medical model is bad for mental health.
- Speak out Against Psychiatry (SOAP): Cheryl Prax talked about the next international protest for the abolition of ECT.
- Recovery in the Bin: Robert Dellar spoke about opposing neoliberal recovery model of mental health. ‘Tough on psychiatry. Tough on the causes of psychiatry.’
- New Paradigm Alliance: Isabel Clarke introduced the New Paradigm Alliance and their manifesto and invited attendees to join them.
- British Psychological Society: Che Rosebert spoke about the work of the BPS’s Psychosis & Complex Mental Health Faculty, including their latest publication ‘Understanding Psychosis & Schizophrenia’ which is intended to open up a more helpful dialogue around these experiences.
Presentation: Dolly Sen
“It’s not institutional racism. It just happens every day”
Dolly opened with Suman Fernando’s report on racism in the mental health system and described how nothing has changed with some horrifying statistics. She said that bringing up institutional racism never leads to open discussions. She went on to share her experiences of racism from childhood and how she was not able to talk about this in the psychiatric system, and encountered subtle racism in hospital.
Whilst psychology and psychiatry seem to have mixed feelings about whether racism is trauma, Dolly underlines that it ‘breaks your heart’ and causes extreme mental distress. She has observed the pathologisation of black people’s experiences of pain in the system. She said that there needs to be space to explore distress, gain a sense of worth and to build community justice and participation.
Presentation by Dave Harper, UEL & Asylum Editorial Collective
“Campaigning for change: Ideas from the work of Gene Sharp”
Dave discussed ideas from Gene Sharp for revolution. Started by pointing out how much has not changed in the mental health system, for example sectioning is twice as high than in the 80s. Models of change have focussed either on understanding to change law or policy. However Sharp’s ideas were around having different tactics for each pillar of dictatorships (in this case Psychiatry). He talked about how much resistance is just reactive and how debates around the DSM could have been broadened out. He suggested that a start could be made with low risk methods focussing on widely recognised issues, such as employment discrimination.
Download: Dave’s presentation
Our workshops were intended as discussion based spaces to begin the process of agreeing what needs to change and how we can go about achieving this. Also see the typed up flipcharts and powerpoint presentations to get a feel for these sessions.
Double Agents: Creating change from inside the system.
This workshop explored some of the tensions, challenges and opportunities facing those who work within the mental health system to create change. Facilitated by Steven Coles.
Many ideas were contributed during these workshops, including: kidnapping psychiatrists and other mental health professionals so that they can experience coercion first hand; networking with different organisations; the use of humour.
Changing The World: What can we learn from effective Human Rights Campaigns?
This workshop looked outside the mental health field to explore a range of ways Human Rights activists and campaigners have been able to make a difference to the world we live in. Facilitated by Rachel Waddingham (round one) and Jacqui Dillon (round two).
During these workshops we explored the potential for non-violent action including consciousness-raising; louder and more active action; making statements; finding allies in non-mental health agencies. Attendees pointed out that people are often oblivious because they’re not personal engaged so we need to think about how to reach out to these people. We could use the media and powerful visual imagery to engage people’s emotions/minds and bring them in to our movement.
Errrr … But
A supportive and non-judgemental space to explore the tensions and concerns people had about the themes raised during the day. Facilitated by Jacqui Dillon (round one) and Rachel Waddingham (round two).
Attendees at this workshop sessions shared a range of concerns and worries, including: the danger of peer workers being assimilated into the system; the radicalness of lived experience being undermined when people just become agents and cheap labour; the challenges of being able to share positive experiences of the mental health system without silencing others’ negative experiences.
Can We Work Together?
How we can work together to acheive change? This workshop explored the potential scope for collaboration. Facilitated by Stuart Bakewell & Giles Tinsley
We say ‘we’, but who do we mean? Further questions asked included different ways of treating people? What is ‘treatment’? Who are leaders (i.e. service-users or professionals)? Our final consensus was that we want a coherent campaign, a social movement with representation.
Final thoughts, words and ideas from participants
In the final half hour of the conference we gathered back together to share our experiences of the day and see whether we could agree on some ways forward.
Some quotes from the final session:
‘I appreciated being here and meeting everyone. I feel like I have a voice. Thank you very much!’
‘I appreciate the way HVN takes leadership and call for HVN to take leadership of the campaign’
‘This is fucking cool. We need to make effort to translate stuff and share knowledge.’
‘I have a bigger perspective on what is known and how I am going to work in services and how to make society a place we can live in’
‘Being here has confirmed everything I have done on my own in mental health research. Because I am a patient I have lost trust in psychiatry. My health is due to my own research’.
Participants present seemed keen for HVN to take a lead in developing this initiative. However, HVN trustees felt that it needed to be a collaboration where ownership is shared amongst a wider group of stakeholders. They agreed, instead, to host the first working group as a way of following up on the enthusiasm and passion shared during the conference and get things started. They made it clear that they’d hope other participants / organisations would help chair future meetings.
Jacqui Dillon – Conclusion
Today has spoken to our shared frustration. This is not the end!