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Changing The World: What can be learnt from effective Human Rights Campaigns?

Rachel Waddingham & Jacqui Dillon

Download: Changing The World Slides

Campaign issues suggested during ‘Changing The World’ workshops

  • Change the way the public view people who hear voices – hearing voices is a common human experience
  • Stop forced medication
  • Stop Community Treatment Orders
  • Embed true informed choice in mental health support
  • Recognition that mental health is a social issue not a medical one
  • Bad things happen to people which drive them crazy
  • The ‘chemical imbalance’ theory is a fallacy
  • Public health approach to violence & abuse
  • We are all in this together – mental health and safer communities
  • Psychosis is a sane reaction to insane circumstances
  • Fighting for the rights of those deemed mentally ill is the last great civil rights movement

Some methods suggested by participants on the issue of forced meds

  • Theatrical demonstrations, including ‘shock performance’ of forced medication (maybe with a celebrity) with good media follow up
  • Work out the number of pills given by force. Find this amount of sugar pills and dump in front of the DoH.
  • Use shocking truths in social media, mainstream media and petitions (e.g. & avaaz)
  • Fight with facts. Community Treatment Orders (CTOs) are not effective and there is no evidence providing their efficacy. Chemical imbalance theory = not true. Drugs alter brain states. Get the message out in different ways to different people.
  • Collaboration with human rights agencies (e.g. WHO Millenium Goals, Amnesty Int)
  • Ye olde imagery which shows outdated practices in use today
  • Visual campaigns: Before meds (using a physically healthy image) vs After meds (using a physically unhealthy image). Or perhaps showing a visual representation of someone being forced to take medication
  • A prisoner of conscience – a figure to speak out for the cause
  • Pick a case story

Double Agents: Creating change from inside the system

Steven Coles

Download: Double Agents Slides

Flipchart Notes

  • “Psychosis can be a sane reaction to insane conditions”
  • We need videos, tweets and films to spread the message.
  • We need to find a way to make complex ideas accessible
  • Therapy has to be more than just tablets!!
  • Is there an extent to which psychiatrists are suffering from delusions in their adherence to a medical model that cannot be evidenced? How could psychiatrists be helped to share the experiences of their service users?
  • How can we gain access to all research – especially negative and critical versions?
  • Can we change the treatment of people in inpatient settings – to share lived experience and normalise it? Some members discussed examples of good person centred care around the country – how can these be shared and spread?
  • How do we challenge the basic assumptions that equate medical knowledge with expertise around how to live? What is it about the scientific method that establishes claims to knowledge and expertise in areas where science has so little certainty to offer?
  • How do experts by experience position themselves, how can one be trusted and respected by partners, but also challenging? About building relationships.
  • Influence ideas as a practise educator – lead by example – allow people to work through their judgements to get to a more compassionate place.
  • What can be done to give service users power in their own services – the group all have experiences of where service users have been involved in this work have become benign – there is something about needing a tremendous confidence to challenge rooms full of professionals when they have power over your life.
  • How could we have user groups where psychologists and psychiatrists only take notes and users facilitate with the function as; share knowledge, implement change, critical questioning?
  • Establish a framework for people to re-establish their agency – diagnosis removes agency. Double agents as rescuers.

Errr … But

Jacqui Dillon & Rachel Waddingham

Flipchart Notes

  • We recognise within the group a breadth of explanations for voice hearing.
  • We discussed the process that had led to the development of psychiatry in its current form and acknowledged that most psychiatrists have entered the profession with good motives. What kind of conversation with psychiatry can be fruitful?
  • Discussion of the impact of austerity on services – is there evidence that cut-backs are making services more risk averse, or that more person centred approaches are more vulnerable to cuts?
  • How to educate people about side effects / information before seeing a doctor.
  • What would happen if there was a private prosecution of corporate manslaughter against psychiatry for shortening lives with toxic medications?
  • How do we publicise this fallacy about a ‘chemical imbalance in the brain’ and prepare patients on how to tackle this when they are at their most vulnerable.
  • How do we get these insights out into the mainstream?
  • Could organisations be asked to sign a pledge with a shared slogan? How would we come up with the core message and identify the common ground?
  • Make sure that personality disorders are not ignored – the group agree that personality disorder is a deeply stigmatising diagnosis that is as problematic as psychosis.

How Can We Work Together?


Giles Tinsley & Stuart Bakewell

Flipchart Notes

  • How might we attempt to use the legal system, both national and international, to challenge the human rights implications of current mental health interventions?
  • Assimilation of people with lived experience and peer experts into the mainstream – we discuss what it is about inclusion in services that sometimes leads to user involvement initiatives being less challenging than we would expect?
  • How would one rebuild the mental health system using lived experience as the building blocks? How different would this look – how much more humane and recovery focused would services be? Do the nature of services (enforced medication, ECT, locked wards) actually increase stigma by sponsoring tabloid notions of fear and difference?
  • Sectioning: what does it mean to be a legitimate risk to oneself or others and what would a humane and balanced approach to this be? Members of the group discussed various interventions that they were aware of.
  • How do we start the dialogue with the wider community?
  • How do we work together when we have a broad area of shared interest, but also our own specific areas of focus that form the basis of our organisational aims?
  • How do we embed ‘informed choice’ in the existing system, or is the current psychiatric paradigm necessarily in opposition to the empowerment of individuals and choice?
  • How does a campaign appeal to those without direct experience of the system?
  • Write letters to elected members on mental health issues.
  • What are the barriers to seeking the right kind of help? Access to information about where services can be found, particularly which mental health Trusts provide what? Families being stigmatised is an issue, financial consideration hold people back from asking for help, GP lack of knowledge and fear, lack of interpreters, fear of services.
  • Challenge of maintaining allegiance to one’s own belief systems under pressure.
  • Loss of belief in the ability or desire of professionals to want to help
  • How do we link up nationally when there is no infrastructure to do this – we need a “Royal College of Alternative Approaches”.
  • How do we move from a Time to Change mentality that very consciously equates mental illness with physical illness, and a more challenging ‘real’ change of looking to question the medical model.
  • The over prescription of drugs, the growing use of drugs with children, the belief that drugs have a helpful and scientifically validated impact on brain chemistry; what do we do about that when the medication narrative is so mainstream and accepted.
  • Over pathologising of experience – how do we move from “what is wrong with you” to “what has happened to you”.
  • How do we combat a ‘diagnosis’ culture?
  • The group agree that this is a really fantastic start to an embryonic process – how do we maintain this?