Unconventional Wisdom: Shaping Services Together Conference, Powys, September 2013 - Adding To The Debate?

2013 Conference Theme: Shaping Mental Health Services Participation

In September 2013, Powys Association of Voluntary Organisations  (PAVO) were involved in running a conference in Powys, one of three events across Wales (you can access all three conference reports here).  The event was funded by Public Health Wales and supported by Welsh Government.  The theme was mental health participation.

PAVO lead on the Powys Stronger in Partnership Participation Network and we are a member of Mental Health Action Wales.  You can find out more about the activities we are involved in and the difference we think we are making here.

You can read a full report (12 pages) from the 2013 Shaping Services Together Conference, Powys, on our website here.  In this blog though I wanted to explain a bit about the ideas underpinning the conference planning in 2013.  I also want to tell you about another free conference that you are invited to on Friday 7th March 2014.
 

Learning From Previous Conferences ...

We first ran an event of this kind (i.e. national participation) in 2012, you can watch a video from this event here and read the conference report here.   Eleanor Longden spoke at this event and her talk continued the debate in Powys that challenges the conventional wisdom underpinning our mental health system.  A wisdom that is founded on the idea of "mental illness". You can read more about this debate in my previous blogs here and you can watch Eleanor talk on ted.com in this link.  

Eleanor Longden is joining us again on 7th March 2014, you can find out more about this here.

 

Thanks to people's willingness to get involved in the 2012 conference and to the feedback we received we were able to learn a lot from this event. 

We used this learning to help us to underpin the  2013 conference planning on two questions:

 

“Should mental health services be shaped by the question what happened to you rather than what’s wrong with you?”  

 

"If so, how can mental health participation influence such a fundamental change to our mainstream mental health services?"

 

As well as asking us to provide more opportunities to explore the de-medicalisation of distress, you also told us that future conferences should include:

"...time for exceptional and inspirational speakers that bring to the debate their own experience of mental distress"

 

... no pressure then! 
 

So A Big Thank You To Jacqui Dillon...

 

Given this we were absolutely delighted when Jacqui Dillon agreed to come to Powys and talk at this conference.  We think that she fitted the bill and luckily you don't have to take my word for it,  you can watch her full talk here.

“Jacqui Dillon is one of the most inspirational speakers I have ever met, thank you for enabling me to be part of today"

Jacqui Dillon is a writer, campaigner, international speaker and trainer.  She is the National Chair in England of the international Hearing Voices Network.  Her talk was entitled "The Personal is Political" and you can download the slides here. 

She began by sharing something of her own story, her experiences and her survival strategies.  Survival strategies such as self-harm, hearing voices, eating "disorder", creativity and resourcefulness.  Survival strategies that are often judged by mainstream wisdom as "symptoms" of "mental illness" rather than a natural and normal response to difficult life experiences.

She then shared her own experience of mental health services which she summarised against 6 themes:

• Pathologised:  "You are ill. Everything that you say and do will be seen as a consequence of your illness."
• Denial:  ‘It never happened’ or ‘It did happen but you will never recover’.
• Medication:  ‘You are resistant and the fact that you don’t want to take medication is evidence that you are ill’ .
• Dependency & Compliance: ‘You must accept the psychiatric diagnosis and medication and we will give you benefits and a bus pass’. 
• Disempowered: ‘You will never recover. You will always have this illness. You won’t be able to work’.
• Passive:  ‘You do not know what is best for you. We know what is best for you’. her own experience of mental distress

Then she talked about finding a new paradigm, which she broke down into 4 main areas:

• 
  Trauma & Recovery
• Understanding Dissociation
• Attachment Theory
• The Personal Is Political 

She shared some of the latest research findings around childhood adversity & psychosis, for example:

• People abused as children are 9.3 times more likely to develop "psychosis"; for those suffering the severest kinds of abuse, the risk rises to 48 times (Janssen et al., 2004).
• People who have endured three kinds of abuse (e.g., sexual, physical, bullying) are at 18-fold higher risk of psychosis, whereas those experiencing five types are 193 more likely to become psychotic (Shevlin et al., 2007).
• People with "psychosis" are three times more likely to have experienced childhood sexual abuse (CSA) than those with other diagnoses, and 15 times more likely to have been abused than non-patients (Bebbington et al., 2004).

She ended her talk by suggesting some answers to the question:  "What is to be done?".  Her ideas can be read in detail on the slides from her talk available here.

I highly recommend watching her talk (just over an hour).  So far over 1,000 people have viewed it and the feedback, not only from the conference but also from people who have watched her talk on youtube, has been incredibly positive.

 Further Information and Videos From Shaping Services Together 2013

Jo Mussen, Vice Chair of Powys Teaching Health Board and their Lead for Mental Health, Chaired the morning, as part of her conference introductions which included a thought provoking reading from the Robert Whitaker book,  Anatomy of an Epidemic.  The extract was entitled “A Modern Plague” and it can be read here

Sian Richards, Welsh Government Strategy Lead, National Mental Health Partnership Board, alongside other partnership members, and David Crepaz-Keay, Head of Empowerment and Social Inclusion, Mental Health Foundation, talked next presenting us with a presentation entitled “Together for Mental Health” that provided the latest information about: 

• The National Mental Health Partnership Board


•  Developing a National Forum for strategic participation in national and local mental health partnership boards 

You can listen to this in full (36 minutes) here.
 
Powys Youth Forum and Clwyd Theatr Cymru developed, planned, led and ran a participatory workshop on the theme: “Wisdom Across All Ages”.  This helped us to begin to explore participation for people of all ages.
 
You can find out more about the conference and read a full conference report (12 pages) here.

Unconventional Wisdom:  The Debate Continues 7th March 2014

Free Conference:  Wales Early Intervention Service Conference:  Finding Meaning in "Psychosis"?

Friday 7th March 2014.  The Pavilion, Llandrindod Wells Powys.  9.30 am for refreshments.  Finish 4.30 pm.   

 

Another chance to join us and find out more about the debate that challenges the conventional wisdom and to explore the question:  “Should mental health services be underpinned by the question what happened to you rather than the question what is wrong with you?”. 

 

Speakers Are:

 

Euan Hails - Clinical Lead Psychosis Services, Hywel Dda Health Board.  Bio to follow.  But to find out more about his work click here.

 

Eleanor Longden - an award-winning postgraduate researcher with a specialist interest in psychosis, trauma, and dissociation. She is a three times TED speaker, a trustee of Intervoice: The International Network for Training, Education, and Research into Hearing Voices and Soteria Network UK, and has lectured and published internationally on promoting creative, person-centred approaches to understanding and recovering from psychosis.  More here.

 

Dr Lucy Johnstone - consultant clinical psychologist and the author of 'Users and abusers of psychiatry' (2nd edition Routledge 2000) and co-editor of 'Formulation in psychology and psychotherapy: making sense of people's problems' (2nd edition Routledge 2013) along with a number of other publications taking a critical perspective on mental health theory and practice.   More here

 

Dr Sami Timimi - Consultant Child and Adolescent Psychiatrist and Director of Medical Education in the National Health Service in Lincolnshire and a Visiting Professor of Child and Adolescent Psychiatry at the University of Lincoln, UK. He writes from a critical psychiatry perspective on topics relating to mental health and has published over a hundred articles and tens of chapters on many subjects including childhood, psychotherapy, behavioural disorders and cross-cultural psychiatry.  More here.

 

This conference is an opportunity to explore:

• how we understand and make sense of these “psychotic” experiences
• best practice in early intervention responses that help people and those close to them cope with these experiences, learn from them and thrive
• the interactions, treatments and ideas that make a positive difference to people’s lives and how we make sure that these are offered with openness and transparency
• interventions and treatments that early intervention services could deliver and how they might continue to develop

Interested in joining us?  To find out more about this conference and to get more detail about how to book, click here or contact the team on pamhinfo@pavo.org.uk, telephone 01686 628 300.

 



Unconventional Wisdom? Time To Challenge – Tackling Stigma

As the manager of a mental health voluntary service in Powys that provides a mental health information service, I am asked, in the conditions of our funding contracts, to “tackle mental health stigma”.  The dictionary defines stigma as a mark of disgrace. Goffmen defines stigma as an "attribute that is deeply discrediting".  

The Time To Change Campaign has been running across England since 2008.  It has been responsible for much activity from staff and volunteers across the country, all hoping that their efforts, attempting to tackle stigma, are having a positive impact.  You can look at evaluation reports from their work here.   It was no surprise to me when the Time To Change Campaign moved over the border, to Wales, last year.  The Welsh campaign is led by Mind Cymru, Hafal and Gofal.  

For many in Wales, this hailed a truly positive step forward, Comic Relief, Welsh Government and The National Lottery were willing to invest in mental health and stigma.  We were given a national focus for tackling stigma and surely all of those trying to tackle mental health stigma would get behind this campaign, work and stand together.  The campaigners hope that by tackling this stigma we will ensure that more people will come forward to ask for help.  In our mainstream services that often means getting the “right” diagnosis and then the “right” help based on this.

The easier path for me to take, as a manager of a service tasked to tackle stigma, would be to get in line to champion the campaign across Powys, join forces with others and together surely our efforts would have a positive impact.  However, I can not act in this way, because I do not believe that the main idea that underpins this campaign, and others like it (e.g. Saneline’s Black Dog campaign), is sound. 

So what is the bad idea that I think needs to be challenged?  Simply this, the mainstream idea that mental illness diagnoses are valid.  These campaigns use the terms “mental illness” as if diagnosis is the truth for understanding our behaviours, misbehaviours and distress.  The campaigns aim to see “mental illness” normalised and seen in the same way as physical illness.  This very statement implicitly indicates that the same evidence underpins a mental illness diagnosis as, say, a cancer diagnosis. 

My challenge to the idea of "mental illness" as a valid diagnosis comes in the form of the ideas of Thomas Szasz and his articulation of them.  In my opinion his arguments are based on logic and reason and I can never hope to articulate his ideas better than he.  You can access lots of videos of Thomas Szasz via the Internet, but here are two to get you started, should you be interested. 4 minute video highlighting a series of statements that summarise his position here and secondly a 5 minute video where he shares his opinions of diagnosing children with “mental illness” here.

 
As well as underpinning it's campaign with the idea of "mental illness", Time To Change uses the approach of statistics that tell us things like - 1 in 4 of us are effected by mental health problems.  In Powys, last month, this approach was challenged at an event, as one that in fact increases stigma, by reinforcing otherness.  Melanie Santorini from the Campaign led a discussion in response to this challenge and there seems to have been some agreement there that perhaps a message of “it's not 1 in 4 it's everyone!" would be more useful.  

Whilst I agree that yes potentially “all of us” could find ourselves experiencing mental distress and exhibiting behaviours that could be perceived as symptoms of “mental illness”, I do not think that all of us, or any of us for that matter, could have a "mental illness". 

All of us are living.  All of us will face things in our lives that are challenging to us (e.g. bereavement, sexual abuse, divorce, redundancy, becoming a victim of crime, illness).  Depending on our life experiences to that point, we will respond in different ways to the challenges that we face, and indeed in different ways depending on the timing of these challenges.  For some that response may be hearing voices, for some it is extreme and debilitating sadness, for some it may be behaviours that challenge our place in “normal society”. So I too would challenge the bold “1 in 4” type statements that many of this type of anti-stigma campaign use because I think these statistics are misleading.  They do not challenge us to understand that any of us, at any point in our lives, could find ourselves struggling to cope and that in response to this we may find that our emotions and actions fall outside of our current society’s understanding of normal behaviour.

And of course society's and individuals' understanding of normal behaviour changes all the time.  For example, I wonder whether I would have accepted a diagnosis of “Female Hysteria” as an illness if I had lived 100 years ago and how I would have responded myself to a women exhibiting “symptoms” like "sexual desire" and "a tendency to cause trouble".  Would I too have seen these behaviours as unacceptable, as symptoms of mental illness?  Would I have wanted “to help” this woman behave normally?  Or would I have asked myself whether her response was perfectly valid given her experience and given the constraints within which she had to live? 

Anyway back to tackling stimga.  The option that I perceive to be the easier one and the one that looks to most people, it seems, like the right thing to do (i.e. act in the name of these campaigns), I am afraid is not one I can take.  I have tried here to explain why.  I think that action, effort and good intentions based on underpinning ideas that are wrong, will produce unforeseen bad consequences. Eleanor Longden clearly articulates the consequences she had to face when her experiences where seen through a “mental illness” lens in this 15 minute video.  

So even though this is not the easiest path for me to follow, I can not support this campaign directly.  A close friend of mine often uses the following quote – I hope he is right...

“The truth will set you free, but first it will make you miserable.”  James A. Garfield

So how do you think we should be using our funding to tackle stigma?  What do you think about these campaigns? What do you think we could do to tackle stigma i.e. the disgrace, the badge of shame that we attribute to our mental distress?

There are many people out there, across Powys and indeed across the world,  challenging the medicalisation of distress and the conventional wisdom surrounding mental health, in our society and within our mental health services.  I would love to hear your thoughts and ideas.  You can comment on this blog, follow me on twitter @powysmh, get in touch with me here or keep up-to-date with events we are running on our website.  Why not join us at our free conference on Sept 19th.  Jacqui Dillon is to be our main speaker to help us continue with this debate.  I hope to hear what you think ...

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.

Unconventional Wisdom: Are the mainstream ideas underpinning mental illness diagnosis as sound as we presume?

In case you are wondering – “where have the wonderful plasticine pictures gone?” - then let me explain. Jackie has temporally handed the "blog reins" over to me for this week’s blog, and artistic I am not.

So instead you get a picture of my hero, Thomas Szasz, who sadly died last year on September 8th 2012, My hero because his ideas changed the way I think about a lot of things in life, and his picture because of a debate that seems to be becoming more prevalent. 

In my earlier blog this year I talked about the mobile phone restriction at our local psychiatric hospital, no comments yet I can only tell (fool) myself that you are reading in silence.  Today I just want to start to explore the question:  Are the mainstream ideas underpinning mental illness diagnosis as sound as we presume?

This week was a very interesting one for me, there seems to have been something in the air (certainly not summer), I have been involved in many stimulating conversations with colleagues from across Powys discussing the validity of mental illness diagnosis. 

Well Jackie got us going! In her last blog, she mentioned an interview with Dr Lucy Johnstone on the Today Programme in which she discussed new research suggesting that there is no scientific evidence that psychiatric diagnoses are valid.  

Eleanor Longden talked at a conference we organised in Powys (more information here) last year and one underpinning idea that I took away was that we need for more debate on the validity of mental illness diagnosis. 

The American Psychiatric Association's publication of Diagnostic and Statistical Manual of Mental Disorders 5 (DSM5) has sparked controversy. It has led to the creation of the International DSM5 Response Committee and their world-wide online petition arguing that DSM5 should not be adopted and used. 

So what would all this mean? What if the mainstream ideas underpinning mental illness diagnosis are just not correct? Within our lifetime will we see a paradigm shift in the conventional wisdom surrounding mental distress? 

What would this shift look like? Would it start with us changing the question that underpins the mainstream mental health services from "what is wrong with you" to "what has happened to you"?

What would that mean to those of us that perhaps take benefit from finally being given a reason, a medical diagnosis, from the experts for why things have been so difficult?  How would people access services, support, welfare benefits if there were no diagnosis for mental distress?  In schools how would children access the extra support they need, again if there were no mental illness diagnosis? Would this change the justification supporting the Mental Health Act and some of the ideas underpinning it around personal responsibility? 

Just some of the many questions that spring to mind!  I’d love to hear what you think and whether this is a debate that you are having with people close to you? 

I'll sign off now with a hope for some sun this weekend and with a quote that feels very relevant to this debate: 
 "There are only two mistakes one can make along the road to truth; not going all the way, and not starting" Buddha

Eleanor Longden: Learning from the voices in my head

Some of you may have seen Eleanor Longden give an inspiring presentation at our Making A Difference conference in Newtown back in May.

Earlier in the year Eleanor was invited to present a short, 6 min talk at TEDxLondon on voice hearing - it's now online here.  She needs people to consider rating it and leaving some feedback. Talks with the highest ratings will be invited to give extended presentations at TED 2013 in California, so this would be a great opportunity for spreading the word.

At 17, Eleanor Longden had a promising future ahead of her; then she was diagnosed with schizophrenia. After a lifelong battle with the voices in her head, today she has a Masters in psychology and a second chance.