Open Dialogue in Nottingham

“The name Open Dialogue was first used in 1995 to describe two key features of the approach: the use of open family/network meetings and a set of principles for organising the whole psychiatric system that made dialogue possible.” Nottingham Open Dialogue group, September 2013

Back in early September I wrote about the conference I went to in Nottingham – Psychiatry beyond the current paradigm. One of the workshops at the event focussed on an innovative approach to mental distress and crisis work called Open Dialogue, and I promised to write more about it in a future post – so here goes.

Before going to Nottingham I had read briefly about the approach in Robert Whitaker’s book – Anatomy of an Epidemic. “Western Lapland in Finland has adopted a form of care for its psychotic patients that has produced astonishingly good long-term outcomes.” You can read more on Robert’s website here. Robert has subsequently referred to the Open Dialogue approach again in blogs and other writings, quoting it as a clear mandate for change. 

So, what happened at Nottingham? Well, first of all, hour one of the session was absolutely Powerpoint free. That was refreshing in itself. A group of people have been meeting informally in the city to look at what is happening in Finland, and several of them had agreed to lead this workshop. They introduced themselves, and explained that they were considering how Open Dialogue could be put into practice locally. They educate themselves at meetings, having a mailing list of about a hundred, and a core 16 – 18 people attend the meetings regularly. Originally they began as people with “lived experience”, but the group has now expanded to include some professionals “which has changed the dynamics”. 

What followed for the first half of the workshop was a dramatisation and replaying of an actual Open Dialogue meeting which had taken place in Finland some years ago. This was extremely powerful, as for those of us attending it really felt as if we were watching and listening to an actual meeting. The professionals involved listened for a long time without saying anything at all to both the person in distress and the close family members. Eventually, when they did speak, they shared their views amongst themselves and allowed the person and his family to listen in. Further dialogue between the whole group then followed, and throughout the session the sense of absolute crisis seemed to gradually ebb away through use of this continued dialogue. There is no video of the workshop, but if you want a feel read “The Story of Pekka and Maija” on pages 411- 414 of Jaakko Seikkula and Mary E. Olson’s article about the approach.

The second half of the Nottingham workshop was used to explore the Open Dialogue approach in more detail and for this a presentation was used, but again group members took turns to explore the different areas. Some of the key points for me were:

• Psychosis is a temporary, radical disengagement from shared communication practices.
• The need to create safety/trust to allow people to express deep fears.
• Stay with the situation as it is, and allow it to develop (without using specific “tools”).
• The reflection that the team does is in the family meeting.
• Results have been better for those who took no neuroleptic medication or had it at a later point.
• Is the medication for the sake of the individual or for those around them, including the team?

The group reported an 85% recovery rate for psychosis using this approach. So that, rather than a growing number of people going on from psychosis to be labelled as “schizophrenic”, there are actually very few people with this diagnosis in this area of Finland. It is actually disappearing.

A film-maker called Daniel Mackler has produced a number of videos on Open Dialogue, some of which are available on the web. I particularly enjoyed his interview of Jaakko Seikkula, Professor of Psychotherapy in Finland (author of the article quoted above), in which Jaakko states: “All of us could have psychotic problems! Psychosis is an answer to a very difficult life situation.” 

I was truly impressed by what the Nottingham group had found out so far, and how they conveyed their learning at the workshop. You can find further links to documents about Open Dialogue on our new website page here – and thank you to Nottingham Open Dialogue for sending us some of these. What can we do in Powys to bring this innovative approach a little closer to us…? Do you have ideas about this? Let us know by commenting below.

Meanwhile, to finish….  Monica Cassani, “a social worker and … a person whose life was severely ruptured by psychiatric drugs”, created the BeyondMeds blog and posts about the mental health system in the United States, and alternative approaches such as Open Dialogue. This week in the UK the BBC reported on the need for more psychiatric beds – in England…. I’m inclined to agree with Monica’s view that maybe, if the Open Dialogue approach was widely adopted just as has happened in Western Finland, then the psychiatric hospital beds (wherever they are in the world) would lie empty…

Unconventional Wisdom: Organic Reasons for Psychosis – Do we need to make sure that we don’t miss the question “is there anything physically/organically wrong with you”?

The Madness Of King George

I am on a bit of a mission at the moment trying to encourage people across Powys to explore whether the important question we need to be asking is:  

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

In May 2012, Eleanor Longden spoke at an event we ran and raised this question. This year we are running another free conference on Thursday 19th September at which Jacqui Dillon will help us explore this question further.

We are by no means the only ones debating this.  In fact, it seems that this question is resonating with may others and fuelling a debate across the world around the validity of mental illness diagnosis.  You can access some of this debate on twitter @powysmh.  

Whilst I for one am very interested in the impact that asking this question may have, I also wish to raise the need for caution.

In our drive to ensure that people are asked "what has happened to you" within health services, do we need to make sure that we don't miss the question “is there anything physically/organically wrong with you”? 

Psychotic symptoms (e.g. hallucinations, delusions, disturbed and confused thoughts), for instance, can be caused by illnesses, diseases and physical health conditions.  On the NHS Choices website there is a page that lists the medical conditions that have been known to trigger psychotic episodes.  These include Malaria, Syphilis, Azheimer's disease, Hypoglycaemia, Lupus, brain tumour and Lyme disease. But, this does not seem to be a complete list. I have also come across other organic causes that were not listed there.  B12 Deficiency, Porphyria, Wilson’s Disease, cerebrovascular disease can be found elsewhere on their site citing psychosis as one of the symptoms of these conditions . 

These organic/physical causes produce symptoms of psychosis for a number of reasons, for example abnormal enzyme production, brain damage, tumours, chemical element poisoning, abnormal hormone action, abnormal blood supply to the brain and vitamin deficiencies.  There are physical investigations and tests that can be done to determine whether someone is suffering from these conditions.
 
When someone first seeks help, or finds “help” thrust upon them, for psychotic symptoms, what investigations will occur to determine whether there is a organic/physical/biological cause?  

Diagnosed with syphillis

For adults, the Map Of Medicine Pathway based on National Institute for Health and Care Excellence (NICE) medical guidelines states that if someone presents to them with suspected schizophrenia, then doctors need to determine whether or not there are any physical/organic explanations for their symptoms.  

Worryingly, I think, the recently published (Jan 13) NICE guidelines for psychosis and schizophrenia in children and young people, does not seem to indicate that psychotic symptoms can have organic causes.  I could not find anything in the guidance, the supporting care pathway or the information for the public that indicated that psychotic symptoms could have organic causes.  I have to admit that I might be missing something, the guidance is very long, so I will be contacting NICE to ask.

Can psychotic symptoms be misdiagnosed as "mental illness" when they are actually caused by organic/physical conditions? 

Unfortunately it seems the answer to this is yes.  It is not difficult to find examples of misdiagnosis, where psychotic symptoms that have an organic/physical/medical explanation have led to people being given a mental illness diagnosis.  There has also been scientific work  that highlights where organic disease has been incorrectly diagnosed as mental illness (e.g. schizophrenia).     

How often can psychotic symptoms be attributed to organic/physical/medical explanation? 

I am not sure that we really have the information that would enable us to get to a definitive answer, I have found figures that range widely, from 5% through to 30%.   

So over to you. Can you help me answer these questions?  Are they questions worth asking?  Tell me what you think ... 

• Should mental health services be shaped by the question what happened to you rather than what’s wrong with you?
• In our drive to ensure that people are asked "what has happened to you" within health services, do we need to make sure that we don't miss the question “is there anything physically/organically wrong with you”?
• When someone first seeks help, or finds “help” thrust upon them, for psychotic symptoms, what investigations will occur to determine whether there is a organic/physical/biological cause?
• Can psychotic symptoms be misdiagnosed as "mental illness" when they are actually caused by organic/physical conditions?
• How often can psychotic symptoms be attributed to organic/physical/medical explanations?

Unconventional Wisdom: Dementia and Mental Health - Uncomfortable Bedfellows?

I attended an event last week - "Creating a Dementia Supportive Community in Brecon".  The initiative is being driven forward by passionate people; individuals with experience of dementia and those close to them, alongside staff and volunteers from Alzheimer’s Society.

The aim of the group is clear – to increase our awareness of dementia and change the way we think, talk and act.  You can access the notes I made from the day here. If you want to find out more or make contact with the group let me know..    

I am very fortunate that my role within Powys Association of Voluntary Organisations (PAVO) allows me to attend such inspiring events.  I learnt more about dementia from a husband and a daughter, willing to share their stories with us at the event; than I ever had from any reading on the subject.

As a manager of a mental health team in PAVO and as someone who has had only very limited personal experience of dementia, my knowledge and expertise of dementia was and still is very limited.  Over the last three years the topic is something that has loomed over me, I have to admit, like a big, dark, scary cloud (I'm pretty used to dark clouds living in Powys, I seem to have spent yesterday under one).  I have been under various pressures to agree that dementia sits under mental health, but I have always thought that this needed more thought and debate.  During this time, with the little knowledge I did have, my mind has been screaming that dementia does not sit easily within the field of mental health.  

So this worry has been with me for many years, and despite a number of attempts to get people who know a lot more than me to engage in this debate, I have failed.  So inspired by Thursday’s event and armed with a tiny bit more knowledge, I am going to take the leap and try and start a debate.

Dementia and Mental Health - Uncomfortable Bedfellows?

Dementia is a term used to describe more than one progressive illness that structurally and functionally affects the brain,  For example Alzheimer’s disease, the most common type of dementia, is brain damage caused by the actions of proteins. Vascular dementia is the second most common form of dementia and is brain damage caused by a disruption in the oxygen supply to brain.  Dementia symptoms manifest themselves as loss of memory, mood changes, and problems with language, reasoning and decision making. 

I have been around long enough to suspect that the evidence and ideas surrounding dementia and reported across the mainstream are not as certain as they are often portrayed but what I am told makes me understand dementia as a term that describes a number of illnesses caused by progressive brain damage. 

Things are not that well understood in mental health.  The conventional idea underpinning the mainstream understanding of mental health is one of mental illness and the various supporting theories that look for something wrong either structurally of functionally with the brain (e,g, searching to find evidence for a chemical imbalance).  However many would argue against this conventional view and support a theory that conditions that are diagnosed as “mental illness” are not illnesses at all, but a response to trauma and adversity.  You can watch Eleanor Londgen explain this idea based on her own experience of mental distress here or listen to a recent debate on the Today Programme here.  My recent blog, Unconventional Wisdom?  Are the mainstream ideas underpinning mental illness diagnosis as sound as we presume?, begins to explore this debate.

We do know that there are some illnesses that cause symptoms similar to those experienced by people with a mental illness diagnosis.  For example, Acute Intermittent Porphyria, the disease famously linked to King Gearge III.  We may, in the future, find evidence for other diseases like this that cause mental distress.  Thomas Szasz would argue that if and when we do, that doesn’t support the idea of “mental illness” but just that we understand better another illness (sorry that's another debate ). 

But we do have, within the mainstream field of mental health, a plethora of conditions and disorders that are diagnosed by psychiatrists, as “mental illnesses” using the Diagnostic and Statistical Manual of Mental Disorders (DSM-5).  The diagnoses are based on observation and reading of people’s emotions, behaviours and actions.  For example, Schizophrenia is characterized by delusions, hallucinations, disorganized speech and behaviour and other symptoms that cause social or occupational dysfunction.  Internet Gaming Disorder  is diagnosed when internet game play is seen as compulsive, to the exclusion of other interests, and where persistent and recurrent online activity results in clinically significant impairment or distress. 

So my debate starts (finally I hear you cry) with two questions:

• Does it make sense to place dementia, illnesses caused by progressive brain damage, with mental health, a group of conditions and disorders that may be caused by illness or may be a natural response to our life experiences? 
• Does it make sense to place dementia, illnesses caused by progressive brain damage, alongside mental illness diagnosis, diagnoses that some people believe we can "throw off", so to speak, believing that what is experienced is not an illness but a natural response to life? 

Of course I can see that experience of the disease dementia can cause serious stresses and strains on our mental health.  So people may turn to the field of mental health for information and support with this.  For example, the man talking at the event last week explained “sometimes I go days without being able to put two of my own thoughts together, I am constantly focused, 24 hours a day, 7 days a week, on my wife and making sure she is safe and as content as I can help her be, but it is at times like this that I experience symptoms of depression”. 

People with dementia are often (and as I understand it sometimes controversially) prescribed “anti-psychotic” medication.  In dementia I assume they are prescribed with the underpinning idea that they may help control behaviour and emotion, where as in mental health they are prescribed with the underpinning ideas that they help to address the "mental illness" (e.g. a chemical imbalance).

So over to you.  It will be a very limited debate if you leave me here, in all my uninformed glory.  I really hope you are willing to try and help me.  Tell me what you think, does this make any sense to you, have you been struggling with any of the same questions? What links and differences do you see?  How would you answer my questions and what questions do you have?    What else do I need to know, what information do you think I need to help me with this debate? 

R D Laing pops up again

“Madness need not be all breakdown. It may also be break-through. It is potential liberation and renewal as well as enslavement and existential death.”  R D Laing, 1927 - 1989

Yesterday morning I heard the Scottish psychiatrist’s son, Adrian Laing, speaking on BBC Radio 4’s Saturday Live programme (about 30 minutes in if you listen again). He recalled life with his father, a bittersweet combination of experiences also documented recently in The Daily Telegraph, and then outlined his participation in one of Laing’s more unconventional therapies – a “rebirthing”.

The story reminded me of a comment in Laura’s recent post on Thomas Szasz, where a reader made the link between Szasz and Laing. The Anti-Psychiatry page on Wikipedia pulls them both into the same camp, but as Laura pointed out – Szasz was not anti-psychiatry, it was the coercive nature of psychiatry as practised that he opposed. Nevertheless, the two psychiatrists are often lumped together in the political debate over psychiatry, and in pushing the view  “that psychiatric treatments are ultimately more damaging than helpful to patients”.

The debate, which was particularly vocal in the 60s and 70s, is regarded by some to have been “of its time” and no longer relevant. After all, mainstream psychiatry (relying heavily on drugs in its attempts to treat what are regarded as medical problems) seems to rule the roost, certainly in the developed world. However, it appears as if the debate is gaining renewed momentum of late...

I unexpectedly discovered a copy of Laing’s “The Politics of Experience and The Bird of Paradise” on a bookshelf here at home. (It’s not mine – G is also more well-read than me!) Yesterday after listening to Adrian I read the chapter on “The Schizophrenic Experience.” Here are a couple of, what I believe, are relevant quotes:

“It seems to us that without exception the experience and behaviour that gets labelled schizophrenic is a special strategy that a person invents in order to live in an unlivable situation.” (Following research studies made by Laing and two colleagues. His emphasis).

“’Schizophrenia’ is a diagnosis, a label applied by some people to others. This does not prove that the labelled person is subject to an essentially pathological process, of unknown nature and origin, going on in his or her body.”

Dr Joanna Moncrieff, a practising psychiatrist and critic of pharmaceutical drugs, said that “I was reading Thomas Szasz and R.D. Laing when I was at medical school – they were the only ray of interest I could find in the subject area.” With like-minded colleagues she set up the Critical Psychiatry Network which aims to debate issues such as “scepticism towards the evidence base, the biological basis to psychiatry, the efficacy of biological treatments, and an objection to the emphasis on coercion and medicalisation and the issues of social control.”

So... the debate does seem to be very much out there and current. What do you think?

PS: You can watch an intriguing 1989 Channel  4 documentary on R D Laing here. It’s 1.5 hours long (but absolutely worth it), so make sure you are sitting comfortably...

Hafal in Powys

This afternoon I met with Carina Edwards, who works for the mental health charity Hafal, based in Colwyn Bay. There was no sign of the famous VW camper van in the PAVO office car park, but I look forward to getting an on-board tour another time!

For those that don't know, Hafal is, in its own words:  “a member-led charity run by the people it supports: people with a serious mental illness and their carers. We believe that people who have experienced mental illness at first hand know best about how to achieve recovery.”

I like dipping into Bill’s Blog - by the Hafal Chief Executive Bill Walden-Jones (one of our favourite blogs - link on the right). You never know what you might find... photos of his cats Rhys and Huw lazing around (pets are good for your mental health) or championing the value of psychological therapies for people with serious mental illness, including those who experience a psychotic illness.

Carina was in Powys to recruit a new Family Support Worker who will hopefully be based in Llandrindod Wells and start work in the next few weeks. The role was created to support carers of those with a serious mental illness, and is funded by Powys County Council. The previous worker had moved on after doing excellent work with about 60 carers across the county, setting up strong networks of carers, and also carrying out one-to-one work as required. Another particularly rewarding part of her role was to set up popular well-being days (of the spa and pampering variety).

Carina said that interestingly uptake had been much greater in South Powys, which was surprising considering the greater population in the North. I wonder why? What do you think? 

Do you know someone caring for a person with a serious mental illness such as schizophrenia or bipolar disorder? If they don't already know about the Hafal service, then watch this space, and we'll introduce you to the new worker when they start.

The Abandoned Illness

"The message that comes through loud and clear is that people are being badly let down by the system in every area of their lives." 
Professor Sir Robin Murray, Commission Chair, The Schizophrenia Commission

This week saw the publication of The Schizophrenia Commission's year long enquiry into schizophrenia and psychosis. It was carried out in England, but is clearly of interest here in Wales, where many of the issues will be relevant. It concluded that a major overhaul of schizophrenia services was required.

You can read and download the report here on the Commission's website. 

There is a BBC news story about the report here.

I first heard about the report early on Wednesday when I woke to Robin Murray speaking on Radio 4's Today programme about how schizophrenia is often triggered by a traumatic life event. He suggested that many people may be genetically vulnerable to developing schizophrenia, but not all do as they may never experience the trauma which could spark the schizophrenia or psychosis. Others do, and that trauma could be anything from bereavement, to losing a job, to witnessing a crime - well, anything traumatic in effect. 

Hafal, the mental health charity, has some useful information about schizophrenia here.

Do you have any experiences of schizophrenia services in Mid Wales? Let us know what you think.

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.

Elyn Saks: A tale of mental illness -- from the inside

"Is it okay if I totally trash your office?" It's a question Elyn Saks once asked her doctor, and it wasn't a joke. A legal scholar, in 2007 Saks came forward with her own story of schizophrenia, controlled by drugs and therapy but ever-present. In this powerful talk, she asks us to see people with mental illness clearly, honestly and compassionately.

Elyn Saks asks bold questions about how society treats people with mental illness. She views her illness very much according to the prevalent medical model of illness.

Click here to link on presentation on TED TALKS

Demystifying Schizophrenia

By Walker B. Shapiro, Medical Student

Reviewed by Claudia L. Reardon, M.D.

You have probably heard of schizophrenia - in newspapers, books, movies, and TV shows; you or somebody you know may be affected with this mental illness. Nonetheless, confusion about schizophrenia is common. This post provides some basic facts about schizophrenia, including common symptoms and available treatments. Schizophrenia is a chronic, treatable brain disease that affects an individual’s thought patterns, behavior, and perceptions of reality.

Some general facts about schizophrenia:

Affects more than 1% of the population with similar rates around the world

Affects men and women with similar frequency

Symptoms usually start between ages 16-30

Most people with schizophrenia are not dangerous or violent

The symptoms of schizophrenia vary greatly between individuals. They can also change and get better or worse over time. Some of the most common symptoms are listed below:

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  Hallucinations – hearing voices is common
  
  


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  Delusions – fixed belief in something untrue or impossible
  
  


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  Paranoia – unhealthy or unfounded suspicion
  
  


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  Disorganized thoughts – may go on tangents or not make sense when speaking
  
  


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  Loss of interest or motivation – may not enjoy daily activities or social interaction
  
  

Schizophrenia is a serious chronic disease, but treatment is available to help people get back to thinking clearly and leading full lives. The most important treatment elements include:

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  Medications (‘antipsychotics’) – help restore and maintain normal, healthy thought patterns
  
  


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  Therapy and rehabilitation – help cope with stress and return to work, school, independent living, and social interaction
  
  

If you are concerned that somebody you know might be suffering from schizophrenia, encourage them to see a doctor for evaluation.

Find more facts on schizophrenia at www.psychiatry.org/schizophrenia.

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Understanding Psychosis

By  Sara Coffey, D.O.



Often patients and family members have a hard time understanding how a person can be psychotic.  Psychosis is defined as grossly impaired reality testing. Psychosis can be present in several mental illnesses including, schizophrenia, schizoaffective disorder, bipolar disorder and even depression.

The stigma or lack of information surrounding these disorders leaves them feeling guilty or ashamed. I often explain to them that the brain is an organ just like the heart, the kidneys or the liver. And just as our heart, kidneys or liver can become diseased, so can our brain.

The brain is a complicated organ with several different functions. It helps regulate our breathing, our heart rate, and our temperature and handles more complex tasks such as vision and hearing, pain sensations as well as processing complex thoughts or emotions. It is easy for us to understand that if the heart becomes damaged it might not pump as effectively, but it is often harder for us to understand what happens if the brain becomes compromised or unwell. A brain with mental illness may start to hear things that are not there, or experience thoughts that cannot be explained and seem irrational.  A person may become excessively anxious for no reason, or depressed without warning or cause.

In the world of mental illness we use terms to describe such experiences like hallucinations and delusions.  A patient with hallucinations might experience voices talking to them when no one is present. When we recall that one function of the brain is to process and interpret sound it is easy to see how auditory hallucinations might occur if that part of the brain is compromised.

Patients can have delusions that people are out to harm them for no reason, and without proof, or delusions that they are famous powerful figures in history. And again, when we look at how the mind works, how complex processes are taking place that help us navigate who we are and what we do, it makes sense that if something wasn’t working normally in the brain that a person could have a belief that was false.

Although these symptoms might make sense when we look at the brain as an organ, or a tool performing a function, it doesn’t lessen the impact mental illness has on families. Often mental illness takes away what we consider the heart or personality of person and this can be extremely difficult to cope with. Furthermore, the simplicity of understanding is not without criticism. For instance although we are learning more and more about the brain every day, there is still no cure for mental illness, only treatment for symptoms, and often times the treatment cannot fully clear the symptoms of certain diseases.

However, it is important to know that psychosis, like other mental illness symptoms, is not the fault of the person with the illness or the family who cares for them. These symptoms are part of a complex illness that affects patients unwillingly every day.

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Talking about Mental Health

By R. Scott Benson, M.D.

In May a few years ago I was asked to give a talk to the seniors who exercised at the mall in the early morning hours. The timing was right for a mental health talk, since May is Mental Health Month.



The focus of my talk was new understanding of the brain and changing thoughts on the cause and treatment of mental illness. The audience was attentive but asked few questions. But after the talk an elderly man approached to clarify some comments I had made about schizophrenia. He called his wife over and they shared the painful story of their adult son’s deterioration as he developed unmistakable signs of this tragic disease.



This couple had been told by the treatment team that their parenting had caused their son’s condition and they needed to leave him alone so that he could recover. And they had carried a burden of guilt for years, viewing themselves as somehow toxic. I was able to answer a few of their questions and then I was encouraged them to join other families involved with our local chapters of Mental Health America and the National Alliance on Mental Illness.



The positive impact of these brave families sharing their stories was reinforced in a new survey from the American Psychiatric Association. And the results of this survey are a cause for celebration telling us how far we have come. More than a third said that stigma has declined, and openness about personal experiences by friends, family and public figures was influential.



The internet has become a valued source of information and was cited by 75% of those surveyed as at least moderately influential in reducing stigma associated with mental illness.



In addition to HealthyMinds, what are the reliable sources of information that have been useful to you? Where have you heard patient and family stories that have reduced stigma in your community?