The Compassion Project

A microblog about social justice in the mental health system.

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What is social justice in mental health?

https://www.psychologytoday.com/us/blog/rethinking-mental-health/201605/leah-harris-mental-health

What is social justice in mental health? What is the conversation? Who is taking part?

http://leahidaharris.com/

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The Compassion Project. 20 likes. Health & Wellness Website

This is the page I set up on facebook calling for compassion in mental health around the world.

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"Compassion is the courage to descend into the reality of human experience"

Paul Gilbert, founder of Compassion Focused Therapy

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"We live in a society that is largely built on domineering ways of relating. This privileges the needs of systems and those with status and power.  However, partnership ways of relating based on equality and empathy have always also been present and seem to be growing.  Whilst domineering practices are still strong, gradually ‘power with’ as opposed to ‘power over’ ways of relating are being used more in different parts of society — including education, business and the family home (see Humanizing Healthcare by Melanie Sears, 2010). Systems that privilege domineering relationships involve everyone in the system being socialised to suppress or deny their true feelings and needs.  People in power have to ignore their own need for connection and empathy from others.  Those complying with domineering practices have to ignore their own will and the wisdom that comes from an awareness of ones own qualities and needs. Domineering ways of relating are strong in the mental health system. Health systems are extremely hierarchical and, rather than empathy, the dominant approach to people’s difficulties is based on top-down management practices, which assume experts know what is best for people. When we learn to ignore our own wisdom a culture of dependence is created, where we think we always need other people (or pills) to solve our problems."

Rufus May https://rufusmay.com/

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Rufus May (born 1968) is a British clinical psychologist best known for using his own experiences of being a psychiatric patient to promote alternative recovery approaches for those experiencing psychotic symptoms.

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Where are all the psychologists in  mental health care?

This might seem a strange thing to ask. We all know we can find a clinical psychologist if we go privately but do we really have enough working in the mental health system? I believe not. The irony is that it is incredibly competitive in the UK to become a clinical psychologist and that there are many psychology graduates who would like to take this route in their career. But do we really have enough psychologists in the health system if we can only offer fixed term psychological treatment? If we can only offer targeted therapy? We need to offer what the private sector offers. Do we wait for the future? Or do we meet the need now? Not everyone can afford a private therapist and some do at great sacrifice. 

I want to criticise targeted therapy. I was offered a few months of therapy with a clinical psychologist on the NHS. We talked about strategies to help cope with hearing voices such as diffusion (imagining the words are in front of you and seeing them in different fonts and colours) but it didn’t get to the heart of what it was like to hear voices. It wasn’t reflexive to my needs as a client or as a customer. And eventually it came to an end. We need us customers to be high status in the NHS and we need public mental health care to match private mental health care. Is this reasonable? Should we ask ourselves whether mental health needs are as important as physical health? I already know. They are. When you run into trouble with your mental health it is as important as your physical health.

I intend to do some research to better communicate my point of view. But the health care system in this country for people who have serious mental health issues is very authoritarian. The guidelines say you need this so this is what we are providing and you have to comply. I think we feel it is all we can do with the resources we have. But I don’t believe that. I think we can overhaul that culture. What we need is to provide a service that revolves around individuals. This is what the best mental health care in the country does. We want service users to want to opt in to treatment. Therefore, we have to spend more money. I often wonder why psychiatrists are in charge of treatment. I think that there should be more psychologists who provide treatment plans. Again, they should work collaboratively with the patient. I think psychologists should have senior roles where they oversee a patient’s progress, rather than a consultant psychiatrist. So we do need more psychologists. The only way to do this is to ask for more money. I am asking for more money today for all the people I have met who have needed to speak to a psychologist and been allocated group therapy or nothing. I am asking for us to lead the way in providing as many psychologists as there are teachers. We need psychologists in schools, in businesses, and in health care. I’m realistic. I know in the future we will be richer and this will be the way mental health care looks in this country. 

The reason why health care in this country is often authoritarian is because we know we have limited resources and we don’t match the best of private mental health care available. We wrongly believe that we can’t change the culture with the resources we have. We don’t prioritise mental health care as highly as we could. We must not forget the acute needs of people dealing with anorexia, bulimia, PTSD, OCD, Psychosis and others. We have to do better.

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HI, welcome to my tumblr blog on social justice in mental health. I know tumblr is a microblogging website but it’s so accessible and easy. I was inspired to start a blog by Daniel Holley, a life and performance coach and social cohesion consultant who told me to write and keep a record of my thoughts, feelings, and research. This is what I am doing here. One day I might start my own website and try a different platform. This blog is for anyone affected by psychosis or mental health and anyone questioning the system. Anyone who finds this blog is welcome to read and to contact me. From humble beginnings, here begins a venture into the world of social justice and changing the mental health system.

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We can do it with the resources we have

Ultimately we need more money for mental health. But we could change the culture of mental health with the money we have.

I speak from my own personal experience as someone who had childhood depression and a hidden anxiety disorder, and as someone who has experienced psychosis since 2012.

The greater your need the more you recognise the lack of resources in the mental health system in the UK. We know that will be different for future generations. But what could we change now?

The problem is that the government rolls out policies for the NHS and these policies all treat service users as though they are the same. Psychosis is probably one of the least understood and most stigmatised areas of mental health care. I also know trauma is too and completely disagree with the diagnosis of BPD. The problem is that the government want evidence to support decisions as to where they spend the money. This is completely understandable. But what we get is a very inflexible approach to treatment. What we need is something that is reflexive to the needs of the individual.

So we need a different kind of research and we need to hear from every one of you reading this blog who has experience of the mental health system in the UK or your own country. It is only with your insights and your wisdom that we can build a first rate mental health system around the world. You are not alone. If you are thinking it someone else will be too or if not, you saying it will make a lightbulb go on in someone else’s head. We just need lots of lightbulbs to go off in lots of peoples heads.

Could we build a grassroots campaign to better mental health care? Sounds crazy? The idea of grassroots activism in mental health care. I thought so. No you have to enter the system, you have to get a PhD, you have to work in research. Where are the think tanks for mental health care? But if we empowered people who are waiting too long for change, whose voices are never heard, then activism in this area could be powerful. I don’t know if that time is now or in the future. But change for marginalised people is often achieved when those people become empowered and start asking for it. We are educated by the insights of those people.

What could we as a society achieve with the resources we have? Well we could change the way we train psychiatrists. We could make empathy very important. We could ask them to go to hearing voices groups to listen to the perspectives of people who hear voices. That could be a requirement. We could inform psychiatrists about how individuals feel about coercive drug treatment, that many people legitimately find they do not respond to drugs. I know psychiatrists have responsibility and feel worried that without drug treatment there is a suicide risk but I have encountered psychiatrists who talked to me like I was a badly behaved child and showed me a lack of empathy. It’s always easier to relate to someone who understands how you’re feeling and shows you kindness. I think we could go further than that though. We could find out who really is helped by medication and who really isn’t. Then we could stop that pressure. So we could use biomarkers to inform us as to whether drug medication is really working or not. That is something that is on the way.

If people with psychosis do not want to be treated with medication then we should provide a robust alternative. There are hospital wards in Scandinavia that treat patients without medication and with therapy alone. Could we adopt that approach in the UK? It is upsetting that you cannot go into hospital without being sectioned. It would be great if you could. We need more money for this. What we could do with the money we have is train the nurses and the mental health staff to treat people with psychosis differently. There is currently a perception that people with psychosis are “little ones” or “vulnerables.” This might be because professionals see people at their worst, because they want to care for them, and because they often see us very frightened. But it is also a way of “otherising” people who experience psychosis. I cannot stress it enough that everyone you ever meet with psychosis is normal but having difficult experiences. So we must listen first and foremost to everyone with psychosis. Be wary of imposing your reality upon people with psychosis i.e. this isn’t happening and I believe this is due to an imbalance in your brain. For the person experiencing psychosis it absolutely is happening because they are clearly experiencing it. They might not know why it is happening. They might think it is real. Be wary of being prescriptive in general. Sometimes what you tell someone with psychosis hurts in ways everyone would find difficult to predict. For example, I know this is slight but I was told in quite an instructional way not to have too many duvet days. Now, I realise that sometimes you have as many duvet days as you need because you are suffering so badly. The advice was well meant and there is something to be said for behavioural activation and finding coping mechanisms but somehow the tone in which it was said was wrong. It’s easy for other people to tell themselves I’ll only have one duvet day. I don’t want anyone to misread what I’m saying and think I or anyone else would take offence easily but we need careful listening more than we need modelling, and I say that very gently. I think that is something that the mental health system should incorporate into its training. Then we do things together. It feels better that way. What do we need? Fantastic listeners who are perceptive and relay our feedback to a team of people who are providing us with mental health care. They have to trust us as precious resources in our own recovery. They have to see us as normal people.

Individuals will have different feedback to give and different bug-bears. It’s therefore important that their support network hears from them and the people involved in their mental health care listen to them.

I hope you don’t feel alienated from my criticisms of the mental health system. It really is about changing the culture with the money we already have. If you trained psychiatrists to be more empathic, created an acceptance that not everyone is helped by medication although some are, and had more equal conversations with people with psychosis then people would be more soothed by the mental health system which would feel more of an ally than an authoritative body. I cannot even interact with the NHS as it currently is because of these systemic problems. A final point I would like to add is that there is a problem with psychiatrists being the ultimate authority. I think psychologists are better trained to empathise with people who suffer from psychosis and we would benefit from their input. When I was in hospital psychologists were never invited to the weekly meetings. These meetings were very intimidating!! They involved like ten individuals around a table looking at me. I know this can be different because when I was in a private hospital aged 14 and 18 it was just a meeting with myself and my parents and perhaps a nurse very occasionally. But in the NHS you have these big meetings that I think are a bit abusive to the patient. Anyway, at none of these weekly meetings was there ever a psychologist. This could be changed!

Ultimately we need more money. We need an individual plan with the psychology team for everyone who enters hospital with psychosis. We need 1:1s. We need tailored therapy. We need psychologists’ input in all aspects of treatment.

I was offered psychological treatment by the NHS. I had group therapy which I found demeaning. We all had to run across the room in our “valued direction” and I felt silly. It got the point across (that you don’t let your voices hijack your day) but it felt silly and I know that was not what was intended. I was also given 1:1 therapy but as with everything on the NHS it is for a limited time only. It was targeted at my psychosis. Sometimes not everything is about psychosis. Sometimes those techniques just don’t work. I really hope no one misunderstands me and thinks I’m a difficult patient! But it’s just we need therapy that is reflexive to our needs as individuals and that really is the bottom line.

There, those are my brief thoughts on what we could do with the money we already have. Patient feedback. Patient feedback. Patient feedback. Listening. Empathy. No drug treatment alternatives accepted and implemented.

Ok one very last thing. Not your fault if you didn’t know but many people with psychosis really don’t like being called “ill”. They may have suffered sexual abuse. They may have a brain that works differently. They may have any number of personal explanations for why they experience psychosis. They may think their experiences are real. But for many people it just doesn’t fit with their personal identity and their own experiences to be called ‘ill’. I also would hate to be called ‘ill’ or ‘well’. I’m having an experience that is really difficult. It doesn’t make me “less than” and it just doesn’t seem to be “illness”. <3

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“I also met an amazing psychiatrist, who absolutely didn't subscribe to the idea of me as 'schizophrenic' – or any other label for that matter. "Don't tell me what other people have told you about yourself," he would say, "Tell me about you." Along with his nursing colleagues, he was incredibly proactive, pragmatic, creative, and empathic. Their approach was all about active coping rather than passive adjustment.”

- Eleanor Longden, talking to Jon Ronson.

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The voices in my head: Eleanor Longden's 'psychic civil war'

Longden, who was a student when she started hearing voices, tells Jon Ronson about turning the story into a TED talk

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A Collaborative Approach to Diagnosis

We need to eradicate stigma from the psychiatrist’s office. One way to do this would be to drop diagnoses which already carry too much stigma. We could consider these diagnoses not fit for purpose. For example, a diagnosis I do not have is Borderline Personality Disorder which has recently been changed to Emotionally Unstable Personality Disorder. There has been much criticism of the name of this disorder with many individuals voicing their discomfort with the label ‘Personality Disorder.’ A fellow student at my undergrad institution conducted a study which found psychiatrists were much more sympathetic when the same patients had a diagnosis of PTSD than when they held a diagnosis of BPD. Yet we know that the vast majority of people with a BPD diagnosis have a history of trauma. Because “dissociation” is poorly understood in society professionals frequently stigmatise individuals with trauma histories and still hold unacceptable prejudices such as that people with BPD are manipulative and vengeful, when there is no basis at all to these accusations. People with the label BPD are empathetic individuals who have PTSD. Why do we not then give them a more validating diagnosis like that one? Since all their pain and difficulty in life stems from trauma. People with BPD are never manipulative or vengeful. They believe their reality at the time and often isolate themselves from people they find difficult or painful. We cannot give these people, often with complex PTSD, meaningful treatment until we admit that the diagnosis Emotional Unstable Personality Disorder carries too much stigma to be acceptable to the APA, and therefore should not appear in the DSM. It is also a misunderstanding of the difficulties people with trauma experience. It is clear that trauma should be central to any diagnosis given to these people. But I also believe that diagnosis should be a consensual act and that service users should be able to be part of the discussion before a diagnosis is decided upon.

I want to continue with this argument, that psychiatry and the medical profession should be about alleviating pain and not adding to pain or imposing its own reality upon individuals. This is not an easy argument to make. But I fully believe it is the direction of a more progressive society which makes service users high status and collaborative partners in their treatment. Intervoice petitioned decision makers to consider changing the diagnoses related to voice hearing such as Schizophrenia and Schizoaffective Disorder. They also wrote an open letter to the English mental health charity Rethink questioning the validity of the diagnosis Schizophrenia and asking them to reconsider the language of their advocacy. This was a very brave act. I agree with them. I think we should reconceptualise voice hearing and how we respond to people who hear voices or those having other experiences. If we made the diagnoses more validating and more accurate we would realise that people who have these experiences are normal people. This would be a first step in raising the status of people who experience psychosis or voice hearing or other experiences. It is important therefore that diagnosis is not imposed upon an individual but emerges as part of a discussion between the individual and psychiatry. 

People who hear voices or who have other experiences are normal people. There is always a reason why they believe the things they do. That reason may be organic but it is not irrational. They are having a rich and complex experience. The idea that they are strange or irrational is from the dark ages. Anyone who has experienced psychosis could, if empowered, enlighten society about this. Just like people who have BPD always have a reason for their emotions and their reactions, people with psychosis have good reason to believe the things they experience. It is their experience after all. Society must realise these people are normal and not stigmatise them. The existing labels for psychosis all stigmatise because they refer to “unusual beliefs.” But that is the wrong way around. They are often unusual experiences and understandable reactions and beliefs. It will take a lot of research to change this way of seeing psychosis but it must change in the future.

We live in a time of ‘wokeness.’ What is being ‘woke’ about? It is about many things but mainly allowing marginalised people to assume their own identities and choose their own labels. It is important that in the future people with mental health difficulties choose their own labels and that diagnosis is a consensual act. We need research (but we need a wholly different kind of research that works with and not against service users). Individuals have important insights and we must not lose sight of this. Service users should work with the APA to conceive of validating diagnoses that are therapeutic, that heal rather than harm. And if an individual does not want a diagnosis that should be respected too. Some people might not want to be diagnosed with Autism for example. That should be respected. I know this is radical thinking but I know it is the direction of the future. Professionals can draw ideas from research but they need to act reflexively to the needs of the service user who is not the enemy but an empathic and wise person. Let them define who they are and then develop the tools to help them achieve their recovery. If you can do this you can help them heal.

We need a collaborative approach to diagnosis and we need to include service users as problem solvers. If you apply intelligence and good sense to this way of conceptualising mental health then you would end up changing the culture of mental health care around the world.

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"Once you label me you negate me."

Søren Kierkegaard

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"Those who love you are not fooled by mistakes you have made or dark images you hold about yourself. They remember your beauty when you feel ugly; your wholeness when you are broken; your innocence when you feel guilty; and your purpose when you are confused."

Alan Cohen

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Fear

I live with intense fear. People with psychosis need more psychological help. It doesn’t feel safe to trust people from the NHS because the system is so regressive. I know that if I tell someone something it will get back to a psychiatrist who might respond in the wrong way. But I really need the support and I need it to be reflexive to who I am as an individual. We think that we need the DSM. We think that we need NICE. We could use some research (but it could be such different research). But what we need in the mental health system is to work out who someone is as an individual and build a response around individuals. Again, if we were higher status in society, if people really treated us like we were the victims of trauma and did not belittle or stigmatise us then perhaps I could let someone in.