Compassionate Mental Health conference, Hereford, November 2019

by Sue Newham

Health & Wellbeing Engagement Officer, PAVO

I went along to this conference with only a vague idea of the content, but being told by my colleagues at Powys Association of Voluntary Organisations that it would introduce me to some new ideas and give me plenty to think about. They were right!

I was asked on arrival if I’d come to do the yoga. I hadn’t, but it was certainly a novel start to the day!

Novelty continued with an opportunity to engage in “Compassion Circles”. Andy Bradley encouraged us to get into threes and listen to each other “with a quiet mind and an awake heart.” Andy’s concern is that our systems, with time pressures and outcomes, can make people feel as if they don’t really matter. Really listening to people can change their feeling of being valued for who they are.

The keynote speaker was Robert Whitaker, author of books about mental health treatment called “The anatomy of an epidemic” and “Mad in America.”

Robert outlined the history of dealing with mental health issues in the USA. He explained that, in the 18th century, the prevailing view and practice was to treat people experiencing mental breakdown as having lost their humanity. Sufferers were treated like animals and subjected to barbaric treatments. At the end of the 18th century, the Quakers set up homes where sufferers were seen as “children of God” and treated with compassion in pleasant surroundings. Records of the day suggest that there was a good rate of recovery following this treatment. In the 1980s, the American Psychiatric Association Diagnostic and Statistical Manual of Mental Disorders 3 became the standard handbook of psychiatric diagnosis. It heralded a shift towards the disease model of mental health. Whitaker sees this as creating a line between “normal” people and “abnormal” people, where stresses associated with life become illnesses to be treated.

I found myself pondering the role of the American Psychiatric Association and the drugs companies. Is it likely that companies that have seen a 50 fold increase in income from mental health drugs would be open to other ways of treating people without drugs? If drug companies fund the American Psychiatric Association, which apparently they do, is it possible for that organisation to embrace different treatment models?

Early disease models of mental illness seemed to be based on the theory that chemical imbalances within the brain lead to symptoms of illness that can be corrected by medication. Although the theory had been found as inadequate as early as the mid 1980s, it has still continued as an urban myth. This was a shock to me, as before this conference, I too would have said that mental illness was to do with chemical imbalances in the brain.

Robert Whitaker challenged the prevailing disease model as an effective means of treating mental distress. He said that, if the model was correct, overall recovery rates should now be going up as medication successfully treats people’s illnesses. On the contrary, statistics record that 1.1 million people were on long term disability in the USA due to mental illness in 1987. That number is currently around 5 million. There is also evidence that full recovery is more likely amongst unmedicated groups than medicated groups.

Whitaker’s overall message is that the medication model has not achieved the outcomes expected and has failed to produce scientific evidence that it is improving the mental health of the American public. He mentioned several projects that had shown success in non-medical treatment of mental distress: the Soteria project; the Norway Medication Free Inititative; the Open Dialogue's model developed in Finland.

He suggested that we need to change the script, seeing struggles as a part of being human, rather than a sign of illness which may see sufferers relying on medication for the rest of their lives. He advocated social support, listening and giving people a sense of hope. Psychological therapies also have a role to play in helping people work through traumas and distress. 

During another session, I heard from Margaret Jordan about the benefits and practice of Sensorimotor Psychotherapy, which treats people holistically rather than focusing on the brain. A phrase which Margaret used seems to me to be important and worthy of more thought. She said, “Trauma is an action that needs to be completed in order for the symptoms to reduce.”

I observed an Open Dialogue session in which a course participant agreed to talk about a personal experience and we observed how Open Dialogue can help people to work through difficulties they were facing. The practitioners were Yasmin Ishaq and Rai Waddingham. This was an extremely interesting, but in many ways simple intervention, involving taking time with people and those close to them and listening to them. Yasmin is a social worker and psychotherapist and Open Dialogue lead for NHS Kent. This seems like a very positive way that people can be given time, listened to and enabled to process and work through their difficulties.

I enjoyed listening to Ruth Young from Jamie’s Farm talking about residential weeks for troubled young people, which involve real farm work and responsibilities, as well as group times for talking. This is how the website describes the programme, “Jamie’s Farm acts as a catalyst for change, enabling disadvantaged young people to thrive academically, socially and emotionally. We do this through a unique residential experience and rigorous follow-up programme, combining farming, family and therapy.”

So what was my overall impression of the day? As someone with only one year’s experience in the mental health field (in other words, a complete novice) I found it thought provoking! It challenged some views that I had held as facts, without really knowing why.

It shocked me to hear that people with severe mental illness have a reduced life expectancy, often dying between 10 and 25 years before their peers. The World Health Organisation suggests that some physical illness may be exacerbated by antipsychotic and related drugs.

Overall, it left me with a feeling that profits and big business set the agenda for many of the ways we tackle everyday life. I feel that society has a duty to question why things happen as they do and whether, in fact, science is being manipulated for the benefit of those making the most money.

I also feel that better listening and focusing on the whole person could help many people experiencing mental health issues. “Compassionate” sounds like a good word to describe how I’d like to be treated if I was going through trauma and distress.

Power and participation Part 2

by Jane Cooke

Last week Jane wrote the first of two blog posts on power and participation. This week we follow up with Part 2.

A long time ago I went on some race equality training. The trainer opened the first day by saying: “You can’t learn from someone who you feel is inferior to you," or words to that effect. That gave me a lot to think about. I wonder if it’s a challenge to lay down now to the many people who make decisions over and about what/who to ‘do to’, and who are also saying, in just about every report one reads, ‘we need to ensure effective participation’.

In our trainings and professional and personal development we don’t give enough time to considering the ‘other’; we gather around ourselves our professional identities, our roles, our pride in our achievements and positions. And, one way and another, we end up thinking about ‘them’ and often how to change and improve ‘them’. What we share, what we can learn from true openness, from open-hearted listening, is rarely in the frame.

In the realm of mental health there is another dimension. Do we question, think about and examine what we feel about the experience of ‘madness’, what we think about people who we categorise as ‘ill’? We are, I believe, still influenced by deep seated ‘folk’ theories about madness. Moral degeneracy had currency not so long ago. If you think that underpinning belief has gone, think about some of the notions that drive the endless, fruitless, search for medical markers, genes for ‘mental illness’. There is often an underpinning assumption that if such things can be found, we will eradicate them, the genes, the carriers, the ‘bad’ foetuses. In my book that’s eugenics. (I’m not anti-abortion by the way or condemning individual decisions about terminations, it’s the broader, unrecognised societal views that I’m saying are not questioned).  Didn’t eugenics die out with the Nazis? No. And it’s not just the domain of the far right, do a search around modern eugenics and you’ll find plenty there. I’m hoping you’ll find it chilling. I do.

We still, as a society, think of those ‘other’ people with characteristics, behaviours, ways of organising thoughts and experiences, as ‘flawed’. Intergenerational shame was (is?) an explanation. Or how about genetic flaws? I heard, about 10 years ago, a senior medical professional declare the view that the explanation for there having been three psychiatric hospitals built around Bridgend was that this was to meet a need generated by a flawed local gene pool. Seriously. As far as I can see there hasn’t been much of a sea change to counter such views.

I hear quite often references to people’s ‘condition’; sometimes there is a reference to someone being a ‘service user’ – a code quite often for ‘difficult’, a way of saying it’s them who is at fault because they are (lowered tone) mentally ill. Not us for having a closed mind, for not being able to manage the discomfort of difference, of challenge to our cherished views.

Many people who use, willingly or otherwise, mental health services have had very difficult life circumstances. Sometimes they, and services, know what these are, sometimes they don’t. Sometimes it is more a case of a slow accretion, many compounding experiences. We know this statistically. We know it anecdotally, we know it empirically. But then there’s a gap in our thinking. We don’t seem to think “How can we adapt ourselves, our views, our ways of working that acknowledges that range of experiences, those various views and understandings of life in order to best share power, to best truly design services with citizens and service users. We say: to join us in our territory you must behave like we do, you must follow our codes (which by the way include the view that you are other, inferior, flawed, suspect). We offer training to ‘them’. Training is very good, personal and professional development is very good; but for all of us. Some people might need to skill up in one area, some in another, whoever they are; everyone brings something of value that others can learn from. There doesn’t, however, seem to be a view that there is a need, let alone a joy, in learning and developing together. There are a bunch of people who are seen as deficient until they know how to play the game. (Then they’ll be seen as a-typical).

Too cynical? Maybe. Let me know some stories to uplift my sometimes jaded optimism.

So, then, to move toward power with? Well first, like that old light bulb, we all need to really want to. And then we need to let go, to feel the discomfort and fear and, together, do it anyway.

Written by Jane Cooke in her capacity as a counsellor and psychotherapist, trainer and facilitator. All views are entirely her own. Email jane.cooke@heartfeltwork.co.uk

Unconventional Wisdom: Exploring The Language We Use Workshop and Poem

Philip, Eleanor and Owen working on the poem

Yesterday, 9th October 2013,  I took part in the Powys DIY Futures Celebration Event in Llandrindod Wells.  I for one really enjoyed the event and the chance to talk to so many people.

I ran a workshop called “Exploring The Language We Use – Mental Health”.  You can read more about this below.  

The following poem, being worked on in this picture, was inspired by the workshop and written by the some of those who took part in it.

The Poem By Philip Moisson, Eleanor Barrow, Freda Lacey, Jill Dibling and Owen (Wordsmith for the Day)  

Der dar ... The Poem

More about the workshop: “Exploring The Language We Use – Mental Health”

Us all ... in action ...

The aim of the workshop was to discuss, explore and raise questions around the mainstream language that we use in the field of mental health.   It was not aiming to search for the right words or the words we think we should be using.  

It was not aiming to judge the words we do use.  Instead the aim of the workshop was just to look more closely at the language we do use and hear often.
 


We did this by taking 4 common sentences and asking two participant actors to speak the words to each other.  

One actor was identified as a psychiatrist, another her patient.  The rest of us bore witness to the sentences being spoken.

We were then asked to explore the simple sentences used by breaking the words that were spoken down into three areas:

• The actual words spoken – explicit meaning
• The context of the words spoken – identifying power, authority, emotions
• The assumptions underpinning the words spoken - the unsaid, the unspoken, the unchallenged facts

12 people took part.  The following pairs of sentences were discussed:

You are a service user.  I am a service user

You have a chemical imbalance of the brain.  I have a chemical imbalance of the brain

I am manic.  You are manic.

I am a carer.  You are a carer.

Feedback from the event!

I felt privileged to work with people who were willing to be so open, enthusiastic, thoughtful and supportive. 

I would like to thank those that took part for their time, their ideas, their kindness and their laughter.   

Laura G

Psychiatry beyond the current paradigm

Last week Laura let me out of the office to go to this conference at Nottingham University organised by the Critical Psychiatry Network and Asylum Associates. It was perfect timing, as it meant I had the opportunity to see Jacqui Dillon speak just a week or so before she visits us here in Mid Wales for our own Shaping Services Together event on Thursday 19 September. 

I stayed for two of the three days and found all the speaker and workshop sessions immensely enjoyable. All stimulated some interesting and relevant debate, and I hope to pick up on some of the specific topics in future blog posts (for example, a workshop on an innovative Finnish approach called Open Dialogue, and Clinical Psychologist Steven Coles’ session on the dynamics of power).

Today, though, I just want to give an overview of the conference as a whole to give a flavour – and maybe tempt some local readers to pluck up courage to step outside the county and take part in an event like this – because there are increasing numbers which is great. I say “pluck up courage” because – I went on my own, I didn’t know anyone else before I arrived, and I was a little nervous about how it would be... two days surrounded by strangers at a huge unfamiliar venue (well everywhere outside Mid Wales seems vast)... and people who more than likely knew far more than I did about the subject – even the title of the conference was a bit off-putting! 

But five minutes after arriving at the venue I was deep in conversation with a woman from Wakefield about how difficult it is to find local groups in Yorkshire where people can share experiences about mental distress. And I was telling her about the peer support group based at Ponthafren in Newtown! (It’s a long drive though... better she sets up her own group in Yorkshire...)

The conference was promoted with this blurb: 
“Voices from within psychiatry who are seeking change are beginning to be heard. The Royal College of Psychiatrists’ leading regular publication, The British Journal of Psychiatry, recently carried a paper from the UK Critical Psychiatry Network entitled Beyond the Current Paradigm, which emphasises the importance of services and practitioners working with rather than upon those who seek their help. Perhaps unexpectedly, it received very little criticism from academics and peer psychiatrists.”

The first morning we listened to three keynote speakers, who started to explore this theme. Hugh Middleton (NHS Consultant Psychiatrist and also Associate Professor at the Nottingham University School of Sociology/Social Policy) began. He said that doctors of any sort only have authority to practice if there is clear evidence that it results in good rather than harm, and many now question whether psychiatrists fall into that category. The paper has “disappeared into a cloud of silence,” and Hugh and colleagues interpret that as “assent.” 

Hugh described how psychiatric drugs are trialled, summarising that all evidence to support the use of such drugs is flawed. The evidence around the benefits of psychological therapies is also possibly flawed – it is felt that if there is a positive outcome from such sessions this is down to the success of the supportive/nurturing relationship which is set up with the "client". Hugh said that we have to accept that sometimes something happens to people which profoundly disturbs them and/or the people around them, and that contemporary medicine provides no better solution than the demonisation or incarceration options of the past. He summed up his session by saying, “people want something different to what they get from conventional experiences. What is it? Let’s look for shared solutions.”

Jacqui Dillon followed, responding to the paper from “an activist position.” It is impossible to do justice to her presentation here, but some of the key points raised included:

• Biological (medical model) psychiatry is now trying to incorporate many of the approaches promoted by critical psychiatry groups, such as the impact of trauma on mental wellbeing. “But this is all about outcomes for psychiatrists – what about outcomes for ‘service users’?”
• It is assumed the doctors are the only ones able to do everything – psychological, social, medical – the lot. The message is: “you need us in charge.”
• Vested interests range through pharmaceutical companies, political parties to society in general, families and carers, some ‘service users’ and professionals.
• We locate madness in others – because it makes us feel OK.

So, what can be done? Some of Jacqui’s ideas to whet your appetite for next week:

• Reframe and reclaim ordinary language.
• Take a stand.
• Work in collaboration with people with lived experience.
• Help promote people’s voice.
• Lobby for change.
• Join a group with similar goals.

And what if we phased out psychiatry completely? What would the world look like then? Again, a few of Jacqui’s ideas:

• Develop non-medicated coping strategies.
• Create a range of self-help support (sharing books, setting up groups).
• Survivor-run crisis houses based on the Soteria model.
• Phase out mental health professionals and give basic skills to people – around active listening, being looked after, and sitting with people in distress.

This session was rounded off by Steve Trenchard, Chief Executive of Derbyshire Healthcare NHS Trust. His background is as a mental health nurse, and he said that he wanted to listen and co-produce solutions not yet found. There is “a need to focus on strengths and aspirations.” And he wants to develop ‘listening’ and ‘being with’ skills. 

Again, it’s very difficult to summarise in a short space, and Steve covered a massive range of areas in his talk, but at each point it seemed to me (and others listening as was discussed later) that his approach as a Chief Exec is extremely rare (even perhaps radical) and much needed. He considered new approaches to dementia care, schizophrenia, the use of physical restraint and seclusion rooms (including a pilot to close the latter) and our obsession with risk. He encouraged more self-control for people, which he considered the biggest factor in improving health, and spoke about the Expert by Experience programme – “no decision about me without me.”

Steve took inspiration, in part, from the past. He referred to The Retreat, set up in York in 1813 by a Quaker called William Tuke, a “supportive and healing environment” for people experiencing mental distress, as distinct from the inhumane and squalid asylums of the time. 

In Derbyshire it seems like things could be changing around services as professionals like Steve are listening to and responding to people’s experiences. I really hope that in Powys people who provide or commission mental health services can make that connection so that we see a shift here as well... And on that note, I look forward to continuing this discussion next Thursday at the Shaping Services Together conference at The Pavilion in Llandrindod Wells! See you there!

An update: Jacqui has kindly sent me her presentation and you can now read it here.

Jacqui Dillon heads to Mid Wales

I’ve just finished reading a brilliant book called – "Agnes’s Jacket" by Gail A. Hornstein, Professor of Psychology at Holyoke College in the USA. It’s about Gail’s investigation into people’s experiences of mental distress, and at times it reads more like a detective story than an academic piece as with as open a mind as it is possible to have she enters and explores “a vibrant underground network of ‘psychiatric survivor groups’ all over the world.”

Jacqui Dillon features prominently in the book as the Chair of England’s Hearing Voices Network – Gail’s enquiries take her to many of the HVN meetings and events. At one Jacqui says: “I have come to view hearing voices as an adaptive and creative strategy, an example of the persistence of the human spirit to survive in the most extreme circumstances..... My hearing voices was a perfectly natural response to the sadistic torment I experienced. Psychiatrists should stop asking, what’s wrong with you? And start asking, what’s happened to you? That’s what we do in HVN support groups.”

I’d come across Jacqui online before, as she features regularly on a favourite website of mine - Mad in America – but search online for any information about hearing voices and her name soon crops up. Jacqui is “a respected campaigner, writer, international speaker and trainer specialising in hearing voices, ‘psychosis’, dissociation, trauma, abuse, healing and recovery.” And her own website is not just an excellent resource for anyone wishing to find out more about the hearing voices movement, but tells a powerful personal story – “of surviving childhood abuse and subsequently using psychiatric services (to) inform her work.... she is an outspoken advocate and campaigner for humane, trauma-informed approaches to madness and distress.” 

So I was delighted to discover that Laura had booked Jacqui as the keynote speaker at the Mid Wales national Stronger in Partnership event (“Shaping Services”) on 19 September in Llandrindod Wells. This event is one of three organised by our Powys Mental Health team here at PAVO and funded by Welsh Government and Public Health Wales. Individuals, carers and staff are invited to share their experiences and views about services, and find out more about what is proposed nationally. (Last year’s event was in May 2012 in Newtown - Eleanor Longden spoke inspirationally - you can read more about the day here).

Laura tells me that this year’s themes are:

• All age participation – to fit with the national and local mental health strategies.
• Children and young people feeling more confident to support each other through mental distress (for example, self harm, hearing voices, sadness, and anxiety).
• Welfare Reform – how are the changes affecting people in contact with mental health services and those close to them? What can we do to make a positive difference to improve their experiences?
• National and Local Mental Health Partnership Board Strategy, Implementation and Participation. 

You can find out more about the conference here. So many interesting issues and topics to discuss, AND Jacqui’s keynote talk….

And so, back to Jacqui… The Hearing Voices Network has joined the debate which has been active on here lately - about the medicalisation of mental distress. Jacqui writes, as Chair, that “psychiatric diagnoses are both scientifically unsound and can have damaging consequences..... People who use services are the true experts on how those services could be developed and delivered; they are the ones that know exactly what they need, what works well and what improvements need to be made. This is not just an academic or professional issue – it’s one that affects our lives.”

So, for anyone interested in pursuing this debate – make sure you book your place at the event as soon as you can - BOOKING NOW OPEN HERE – a quick reminder of the date as I can hear the rustle of paper diaries and clicking onto online calendars….., that’s Thursday 19 September, The Pavilion, Llandrindod Wells, and we really hope to see you there!

Any queries, just get back to us – as always – by commenting below or emailing: pamhinfo@pavo.org.uk, or ringing 01597 822191 or 01686 628300.