Rufus May Blog Thinking Aloud

I was listening to “On the ropes” yesterday driving to work. John Humpries was interviewing John Prescott. Its worth going to ‘listen again’ if you like passionate discussion and debate covering both the political and the personal. (Click here to listen to this episode, available for the next few days). It was like a well-balanced amatuer boxing match with both opponents throwing some big puches. I thought John Prescott made some interesting points about his character, his weaknesses and his strengths. He acknowleged his own problems with articulately expressing himself compared to more educated more priveleged peers. He also talked about how his working class background had meant he did not have the super confidence compared to better educated colleagues in government. He also talked a bit about his binge eating. However he made a distinction between these acknowleged limitations and challenges and his ability to to make good decisions as the deputy prome minister. I think this is an important distinction that employers and occupational health departments still need to understnad that one can have difficulties and still be competent. John Prescott also talked honestly about how he often hated the press. It certainly seems like they have had it in for him over the years. As I listened to Prescott talking openly about the achievements and struggles of his carreer in politics, it made me think about the huge pressure politicians must feel under; to respond to different demands and be aware of the many different perspectives on complicated social isssues. I wondered if politicians ever get taught useful skills like mindfulness.

I first learned about mindfulness when 5 years ago I was struggling to get my work life balance right. I found sometimes I was tired and irritable in the evenings and felt that I was thinking too much about work. I read a book called “Peace is every step” by Thich Nhat Hanh. It introduced me to mindfulness practices. Mindfulness focusses on increasing the amount of time we focus on ‘the here and now’ through our primary senses. The idea is that we spend alot of time thinking about the past or the future and alot of this thinking is repetitive and unneccesary. Because we are often ‘in our heads’ rehearsing conversations or going over past memories we can miss the good things about the ‘here and now’.

A simple mindfulness exercise is mindful breathing, where we concentrate on paying attention to our breathing. We can do this sitting in a relaxed but alert fashion and gradually count each breath; saying in our mind ‘breathing in one, breathing out one…breathing in, two breathing out two”, and so on till we get to five. We go back to one again if we lose count, we also go back to one again once we reach our fifth breath. When we improve our concentration we can try and count our breathing up to ten. I Have found such conscious breathing techniques very helpful for reducing the intensity of anxious thoughts. Mindful walking is another useful technique as we walk along the street we can focus on each step whether we are breathing in or out, so we might be saying ‘in, in, in , out, out, out’ and so on. This technique can again reduce the number of thoughts flowing through our mind as we bring our concentration on to our breathing. If we are indoors we can do a slower walking meditation where we walk very slowly moving one foot forward intime with each in-breath or out breath. All these exercises are very useful for people who feel they are thinking too much. Mindfulness’s roots are in Buddhism and Zen Buddhism has particularly focussed on this aspect of meditation. Mindfulness is being used increasingly to help people reduce stress in their lives and as part of therapeutic approaches. We often use mindfulness at the beginning or end of self help and Recovery groups. Acceptance and Commitment Therapy and Dialectical Behavioural Therapy are two brands of therapy that have placed mindfulness at the heart of their approaches. At the Assertive outreach team, we found when we did an exercise before a team meeting team members felt more relaxed and creative in the following team discussion. I know Chris Trepke at City Mental Health Team has also run quite a few mindfulness classes for colleagues over the last few years. When we are relaxed we are more likely to make wiser decisions, inventors for example often have described having their ‘Aha moments’ (when they make a breakthrough in their thinking) when they were relaxed and not thinking directly about the problem itself. Mindfulness has a number of refreshing attitudes that one can be encouraged through regular practice. These include; nonjudgment, acceptance, non-striving, ‘being’ as opposed to ‘doing’. These are well written about by Mindfulness teacher Jon Kabat Zinn in “Mindfulness Full Catastrophe Living”. By being mindful we can also learn to acknowlege and dialogue with strong thoughts and emotions. This can lead to us developing a deeper understanding of why we think and feel they way we do about certain issues.

I also think mindfulness skills offer a useful counter-balance to our often hectic lives that focus on achieving and doing and where our minds are constantly bombarded with messages and demands (e.g. adverts texts and emails to name but a few). According to mindfulness thinking we may well be more productive if we do less but we do it well. So hopefully as we begin to realise our busy lives and our overconsuming of resources is causing us problems, we will turn to a more simple lifestyle so we are not always ‘on the ropes’ and when we are, we may well be more able to ‘roll with the punches’.

On Friday I am giving a talk about the ‘coming off’ medication process, I thought I’d write a sneak preview of the talk here. We (we being Evolving Minds) have just finished running a year long ‘coming off medication’ support group in Hebden Bridge. The group successfully supported a number of people to reduce their medication, the medications that were reduced were the full range of psychotropic drugs, prescribed for mental health problems. We were inspired to run the group by the Mind ‘Coming Off’ research, which we saw presented in Cambridge a year ago. The group may well be re-launched in the Autumn as a ‘Holistic Minds’ mental health support group which will not focus solely of reducing medication but have that resource available.

Why are such initiatives needed? Prescriptions for psychiatric drugs increased by 243% in the ten years up to 2002 - this also meant a 700% increase in cost. There appears to be a lack of knowledge at GP level and a reluctance of doctors in general to inform people on the best ways to reduce their dependence on psychiatric medication. Mind’s Coming Off medication research found that many people did not feel supported by their doctors when they decided they wanted to reduce their medication. For example where doctors were involved, they were the least likely to be found helpful of any group of professionals/helpers. Partly this is to do with risk. If an serious incident occurs relating to a patient if that person is on medication the doctor is ‘covered’ whereas if they are not on medication, doctors feel they are more likely to be blamed for not having intervened with medication. Another problem is training, most doctors are trained almost entirely to see mental health problems as brain problems, rather than psychological experiences that are ways of responding to social events in the present and past. The pharmaceutical industry spend millions on direct advertising and representations to doctors and millions more on indirect product promotion through sponsoring events and flooding the NHS with ‘free’ drug promoting products. Perhaps we can start to undermine their influence by changing the training of mental health professionals so that it is genuinely more holistic.

A holistic model of health argues that illness is a way of releasing toxins from the body and that we have to work with the illness (to help it on its way out of the body) rather than try to suppress it. Drugs often seem to have the effect of merely temporarily suppressing the mental health problem. A holistic model argues if you suppress illness rather than deal with it you can create chronic illness. I see emotional distress and confusion as meaningful responses to social injustice and tragedy. By suppressing the symptoms we only bury the problem and nature has a way of bringing those problems back sooner or later. We recognise this with the use of street drugs and alcohol, that relying on them to push away pain is problematic, but when we are legally pushing drugs to people the costs of this approach are not looked at.

Encouraging the use of drugs is encouraging the use of quite a passive approach to dealing with your distress. You are expected to lie back and wait for the drugs to do their work. People are more likely to give up on their own resources to deal with their problems. We need to offer people a broad range of ways of dealing with their thoughts and moods, that includes more active coping strategies and initiatives.

I think every mental health professional should know at least ten different relaxation and grounding techniques that they are confident to teach people they are working with (in a future blog I will outline my current top ten!). We also need to increase the level of group activities available to service users as well as linking people into stuff already going on in the community. It is great we have Tai Chi in Lynfield Mount (every Tuesday at 10.30 am in the Rec’ hall). I would like more such classes every day. Boxaerobics for example would be a great way to help people express frustration. I understand there is a punch bag available to in-patients at Airedale hospital, this is good news. When we introduced dance classes last year briefly to Lynfield Mount they were also popular. Drama is also an excellent way to learn new skills in expressing and dealing with emotions. Shoestring Theatre offer a good class for service users at the Cellar project on a Wednesday afternoon. It would be great to get Drama classes into Lynfield too. Such activities can be valuable stepping-stones to community-based activities.

If we can express the emotion that is drivng our distress we are often than able to get some peace of mind and focus on getting on with life. So giving people a range of different ways to connect with themselves and express themselves will then allow people to approach reducing their reliance on psychotropic medication in a pragmatic way.

Critical feed-back can be like a biiter pill, difficult to swallow! A week ago my head was ringing with the different ways I had been described by journalists who had seen the film ‘The doctor who hears voices’. An acting friend recently told me “never read your reviews”.  Good advice, difficult to follow! O.K. We’ll start with the positive stuff: The Mirror had a headline describing me as a ‘mastermind’;  the Radio Times said I was ‘a fascinating figure’, Time Out said I was ‘a man of warmth and sincerity’ and Mark Lawson on Radio 4’s Front Row joked I was ‘Dr Who’, which my boys liked.  While a lot of reviewers said I was ‘maverick’ and ‘unorthodox’, the Mirror also said there was a ‘method in’ my ‘madness’. Meanwhile the ciritical voices began to appear, some of them verging on pathologising my mental health.  The Gurdian said I was ‘disturbing, if not disturbed’, and the Times ‘a  worrying character’.  I was also described as ‘peculiar’; the Telegraph said I was ’strange’ but liked my approach: ‘May took alarming risks but overall this is probably the way to go’. Given that the media has a terrible reutation for excluding the voices of personal experience and putting medical views of mental health on a pedestal I was pleased with the mixed but strong response to the film.  While I have had lots of positive feed-back, on the web there were also more critical views expressed. While Phil Thomas gave the film a great review in the BMJ, and a local medical school e-mailed me to ask for a copy of the film to use for training medical students, on the bulletin of doctors.net, one or two psychiatrists were describing me in terms that would be a bit too profane for this Blog! 

Clearly, ‘The doctor who hears voices’ has raised lots of issues.  For example, some commentators have suggested I am anti medication; that I think mental health workers are not compassionate people; that I am driven by bitterness and am using this to ’self-promote’ and ‘empire build’. So I thought it would be a good idea to respond to these issues.

I am not against drug treatment, I am for people having a choice about treatments as much as possible and having access to alternatives to drugs. I will go into more detail on my views on psychotropic medication in a future Blog. I do think the majority of mental health workers are very much in touch with their compassionate nature. However, I think that nationally, the system of care that is in place means many good caring people end up at times engaging in coercive practices they did not go into a caring profession to do.

I am guessing that by talking about my personal experiences of coercive treatment 21 years ago in the film ‘The Doctor who hears voices’, I have opened myself up to the accusation of being driven by bitterness to criticise traditional psychiatric approaches. So its good to be able to address this. I was bitter about the way I was treated in the psychiatric system 21 years ago. I would say the bitterness lasted 2 to 3 years. I then turned it into a more productive outrage as I started studying sociology and psychology and developed my vocation as a care worker. I think for most of my twenties I did have occasional nightmares about finding myself back in hospital against my will. These disappeared when I started to speak out about the psychological impact of this aspect of psychiatric treatment. I recently met someone in their twenties who still has nightmares of being forcibly medicated at the age of 16 in a West Yorkshire psychiatric hospital. I think the psychological impact of forced treatment is denied by those who practice it, so I welcome the opportunity to debate about its merits and necessity. I think we need more research on the psychological effects of compulsory or forced treatment, particularly with the government planning to extend compulsory treatment into people’s lives in community settings.

I think that I have turned my anger about my own ‘treatment’ and the ‘treatment’ I witnessed others receiving, into a passion for reforming mental health services. My own experiences and observations of psychiatric treatment and my professional experiences of working in mental health services for the last 13 years suggest that the violent practice of forced treatment is over-used. I believe that violent interventions such as making someone submit to a depot injection or ‘a rapid tranquillisation’ often has a deep alienating impact on the individual. My approach is not fuelled by bitterness rather it is fuelled by optimism that a genuine person centred approach that really listens to what people in crisis are going through (and gives them a range of ways of coping) is far more likely to contribute to the person’s psychological recovery. My work with self help groups and individuals who have experienced acute ward admissions suggests people are much more responsive to holistic approaches, being listened to compassionately, meaningful activities, hearing about other’s recovery journeys than they are to an over reliance on psychotropic medication. My work is fuelled by the fact I see a holistic approach having a much more positive impact than a drug-centred approach.

I do think that it is likely to be difficult to manage for example a twenty-one bedded male ward without using forced treatments. Therefore I think we need to rethink how we provide crisis care to people. A recent Mental Health Act Commission report described acute wards as “frightening and dangerous” that they were “tougher more scarier places” than ten years ago. Such findings also suggest we need to think again about how we provide care and support to people in crisis. This is another subject that deserves more discussion.

I would also like to respond to suggestions that I am engaging in an unhealthy ‘self promotion’ and that I am ‘empire building’. I challenge anyone who wants to, to debate this with me, preferably on national television! No but seriously media interviews I take part in and the recent film I contributed to (The Doctor who hears voices) can tend to focus on me as a ‘special individual’. On one chat forum I was described as allowing myself to be presented as a hero-monk! However if you go to my website www.rufusmay.com (or come to Evolving Minds public meetings I help organise) you will find my work is all about group-work and community development (as much as individual work) and I see myself as crucially linked in to many networks and emancipatory movements (in particular the hearing voices movement). So I see myself as part of a movement for change rather than an individual merely seeking power for its own sake. In Bradford and Hebden Bridge I can easily name many other colleagues operating from a similar perspective to myself. Many more are keen to hear and learn about different ways to approach emotional distress and confusion. So as well as a mental health worker, I also see myself as an activist who is part of an emancipatory movement. I have decided to engage with the media to generate wider awareness and debate about our society’s approach to distress and confusion. This does mean I am presented as a ’special individual’ in the media at times, which plays down the work of others. A good example is two years ago, when I agreed to do an interview with the Independent about the Brighton to London Bed-push (see www.bedpush.com) and the story was headlined ‘One man and a bed’ despite me telling the journalist about the fifteen other people involved. However I have come to the decision that this special treatment by the media is a price worth paying (and something I can clarify later) to get a dialogue going in wider society about how we spend resources on mental health services. Traditionally the media has not been interested in the rights of people to a peaceful approach to their mental health problems, so we have to be creative to engage their interest. Anybody is very welcome to continue this dialogue here with me.

Reflections on the making of…

When Leo Regan became interested in filming my work as a psychologist he warned me I would soon sick be of him, I didn’t know what he meant. Eighteen months later I now have a clearer idea! Leo always wanted to get underneath the skin of help-giving and often it was quite exhausting for everyone involved! It took over a year for Leo Regan to make the film about my work called The Doctor Who Hears Voices. Leo has tried to show the humanity of working in alternative ways with voice hearing. The result is a film that is both challenging and realistic in its presentation of the dilemmas of giving people real choices about how to manage an episode of intense distress.

Over a million people watched it when it was broadcast in April on Channel 4. Thousands of people are now down loading form several internet sites. It has provoked a strong response from viewers. Many people have been inspired by the film, I have had over 500 emails asking for advice and or praising the film. Others, perhaps who are more in favour of a traditional medical approach to distress have been troubled or even outraged. I think the film is unusual in that it successfully managed to be a documentary about mental health that avoided the usual traps of being a freak show. Partly because the story shows that mental health problems are understandable and meaningful and also shows my vulnerability it crosses the typical boundaries between professional and ‘patient’. A few journalists were quite uncomfortable with this blurring of boundaries. The principle that there is an expertise of experience that can be as valuable as academic or professional expertise is quite new and a bit threatening to mainstream commentators. Nevermind! This idea that personal experience combined with understanding can become a source of expertise will grow in our society, I think.

Working as a psychologist in the NHS working with adults with mental health problems, I believe people are capable of recovering from all mental health problems if they get the right support. I myself had a psychotic episode when I was eighteen and recovered despite doctors telling me I had a lifelong condition called schizophrenia and that I would always need medication. I think originally Leo was interested in how my role as a ‘wounded healer’ might affect how I tried to help people.

With his camera in tow, Leo steadily shadowed me at both work and in my independent role giving talks and campaigning. Leo wanted his footage to be ‘real’ and not contrived. He went to a lot of effort to film me when I was worried and anxious as well as when I was confident and self-assured. On one occasion he even turned up at my house at three in the morning! The final film focuses on my relationship with Ruth who I decided to try and help outside of my NHS work. Ruth was a junior doctor who was suspended from her practice for having suicidal ideas. After the suspension she started to hear an aggressive voice for he first time telling her to kill herself. Coincidentally, she had approached me for advice just before she started to hear voices. She had stopped taking medication some time before. She could not approach her doctors for help with her voice hearing because she feared that she would definitely lose her medical career.

I set about supporting Ruth non medically. My approach is strongly influenced both by my own recovery journey, holistic health approaches and the ideas of the hearing voices movement. It was important to give her lots of psychological and physical techniques to cope with her sleep problems, her voice hearing and her moods. I became the only person she could trust with what was really going on. Leo was very interested in her story and tried to film us working together on these issues but it was impossible because of her need for confidentiality and secrecy. As she put it “you cannot be a doctor and hear voices”. So instead we began to carefully document our meetings so that we could re-enact them with an actor.

Even documenting the work added pressure to Ruth. For example, often after Leo had interviewed Ruth about how she was doing, I would find that she was extremely distressed the next day. On one occasion I banned Leo from meeting with Ruth for over a month. At that point I felt that we would have to keep Ruth out of the film entirely. In the end Ruth and I decided the pain of the film making was worth the gain of telling her story.

I was working totally against the grain of conventional wisdom. Most health professionals believe that when someone starts to hear voices or get paranoid, both of which Ruth was going through, you have to intervene with medication. If you don’t, conventional thinking argues, the person’s brain will deteriorate irreversibly. That is why drug treatment is justified for all first episodes of psychotic experiences and this is usually backed up with the threat of force if it is felt the person needs to be hospitalised. I firmly did not believe that without drug treatment Ruth’s condition would deteriorate resulting in irreversible brain abnormalities, but, at times, supporting Ruth through her crisis as she struggled with suicidal ideas and intense paranoia, I did question my rationale. I wondered whether my approach was making her worse not better. I knew if she did kill herself I could be held responsible. At the same time I saw an intelligent dedicated person who had been let down by a judgmental employment system, who I believed could recover and make a valuable contribution to society as a Doctor.

Ruth had been told she had a lifelong condition called Bipolar Disorder, that her brain was fundamentally different to other people, in other words she would always be inferior to others. I gave her a different model; firstly, that she could recover a good life. Secondly, that her distressing experiences were not the product of a faulty brain but meaningful communications. I suggested it might not be useful to see herself as having a medical condition called bipolar disorder or any other psychiatric label. I believed that all of her experiences including mood swings, critical thoughts, paranoia and voice hearing were understandable reactions to difficult life events. For example, a lot of her paranoia and voice hearing reflected the way her employers were treating her, as if she was a liability, by suspending her and refusing to trust in her ability to be a good doctor. I was suggesting that these so-called ‘symptoms’ were actually ‘messengers’ about past and present hostile environments and that it was fundamental not to blame herself and give up. Importantly Ruth needed to become confident in resisting the prejudice of her employers by lying to them about her mental health. She could not afford to tell them she was hearing voices. This was hard for Ruth as she is an honest person and she felt her integrity was being ripped apart. As we worked on deeper issues I encouraged her to express her emotions and address buried wounds in order to be released from demons of her past. At times she slipped deeper into paranoia and it was on these occasions that both of us had our faith tested in my approach.

The film charts Ruth’s journey though these experiences and also gives us some insight into the more conventional psychiatric approach. Psychiatrist Trevor Turner, former Vice Chair of the Royal College of Psychiatry, outlines the importance of giving people in Ruth’s situation medication whether they want it or not because “miracles do occur”. In the film Trevor gives a reassuring description of how nurses are trained to restrain patients and forcibly inject them with medication “in the most comfortable and supportive way”.

I hope the film triggers a debate not just about the rights of health professionals to hear voices but also about the rights of people in crisis to a force free mental health service. Every week thousands of people are coerced into taking medication that they don’t want and this frequently does more harm than good. Without giving away the outcome of the film, Ruth and I attempted to work on her recovery in a force free way that honoured her right to have a drug free approach. We had to do this in an underground way. This is surely wrong. It is surely questionable also that many psychiatrists do not see their patient’s ‘mad’ experiences as meaningful. It is surely questionable that many mental health workers still do not promote optimism and a belief in recovery. It is surely questionable that psychotropic drugs that impair functioning are seen as the first port of call and that patients have little choice over what goes in their bodies. It is surely not right that many people who stop taking their medication feel they have to lie about this to their psychiatrists. We are supposed to live in a democracy but if you are being treated for a mental health problem in our society you are very often living in a totalitarian regime where choices are severely restricted. Can we move towards something more democratic and more open-minded?

I am very keen to have a dialogue on these issues so please tell me what you thought of the film and we can have a healthy discussion about the issues it raises.