Finally receiving treatment - a personal view

I was speaking to someone in Powys recently about their experience of "going outside of the NHS towards private talking therapy... a really positive step". A positive step seemed like a good subject for a blog post, and our guest author agreed. Read on....

As an individual I have been in contact with mainstream services for over nine years, both in Powys and in other areas of the UK. Over these years, a combination of GPs, psychiatrists and occasionally other staff such as Community Psychiatric Nurses and support staff from Community Mental Health Teams have made efforts to try and alleviate the severe difficulties that go along with a diagnosis of schizophrenia.

I have found that during times of crisis access to support has been available, given that it is asked for in the right way. The problem however, for me and many others, has been with the issue of getting back to being able to live and function on a daily basis and to a level where it would be possible to believe that the goal of full and complete recovery is not only a real thing but something worth pursuing.

Although there can never be a guarantee that severe distress, mental ill health or challenges to wellbeing won’t occur either in someone who has previously had first-hand experience of these things, or in someone who hasn’t, the journey I have been on leads me to believe in one or two controversial things.

Firstly, like many others, and as supported by a growing body of evidence, I have a problem with the medical model of mental ‘illness’. The medical model is not a simple view and advanced neuroscience is often used to highlight areas of the human brain which may sometimes work differently in those who are labelled as ‘schizophrenic’ (to use but one example).

That shouldn’t detain us here, for as well as the causes for this diagnosis being perhaps still largely unknown and certainly not agreed upon amongst medics, the issue of how best to treat the condition is a big problem.

In my experience the first and last option for many practicing psychiatrists has been to prescribe powerful anti-psychotic medication, which especially since the second generation of a-typical anti-psychotics have been used, can and do alleviate or suppress ‘symptoms’ (such as psychosis) and with less pronounced side effects than the original first generation medications.

After talking to a pleasant local GP about the possibility of finding other ways to treat my own condition than medication alone, we loosely agreed that some combination of medication and talking therapy would be a sensible plan. However, in Powys the availability of talking therapy through the NHS is highly limited and the waiting list spans several years. One person I met has waited for more than 6 years already.

There are organisations such as Mid Powys Mind in Llandrindod Wells who are able to offer a free counselling service and having tried a couple of months of weekly sessions with a volunteer counsellor I found that the ability to share problems confidentially and in a non-judgemental setting brought much relief. 

More recently though, the view that a deeper and longer level of talking therapy could bring improvements to the way a person feels and functions is something which I managed to pick up from sources such as this blog and which in turn led me to explore the availability of private psychotherapy in our area.

Despite living on benefits, with advice on Employment and Support Allowance (ESA) and Personal Independence Payment (PIP) from the Citizens Advice Bureau it has finally been possible to find just enough capital to arrange for regular sessions with a practicing psychotherapist. Partly this is enabled by my practitioner’s policy of subsidising out of work patients with a slightly lower rate to those who are in work.

When making the long decision to proceed, the view of my psychiatrist was that for certain conditions which they believe to be entirely inherent or set in stone within a person’s biological constitution, there would be a risk associated with stirring up long lost memories or otherwise suppressed thoughts and feelings. I was glad of the discussion we had but, in the nicest possible way, could not disagree more strongly with any view which maintains it is not worth pursuing.

After the first couple of months of psychotherapy the tangible areas that many doctors ask about such as mood, sleep and appetite showed marked improvement and once more it seemed that the future could hold prospect and possibility rather than simply being a drab and bleak inevitability, where, to put it frankly, death would have been a welcome event.

I can’t speak highly enough of the time and space that I am lucky enough to have found within which help is given by another mind to sort through the problems and issues which we otherwise face on our own. This would include issues that an individual is aware of and also issues which it is almost impossible to be aware of by yourself.

As for ‘symptoms’, although my therapist is mindful of these and very respectful of the view of GP and psychiatrist, the outlet for me to unburden and unpack life’s major and minor worries means that as long as any possible reduction in medication is done gradually and carefully there is someone else to help keep a watch should difficulties arise.

There is still lots to do, but finally having some level of regular support has been a great relief not just to me but to remaining friends and family. As for the financing of this I would make the case to individuals, health professionals, charities and funding bodies to give increased engagement with other therapy some serious thought.

Have you had experience of talking therapies in Powys recently, whether provided by the NHS, by the voluntary sector or privately? Or are you still on the NHS waiting list? Let us know about your experiences in the comments' section below.

Mental distress - who has the power?

“Power is essential to how we make sense of the experience of distress and when considering how to be helpful as service providers.” Steven Coles, September 2013

In Powys there is an ongoing debate around who has power about even the simplest things when someone is in contact with services because of mental distress. Freda wrote recently about the issue in her post Smoking and snacking? Saving lives or life-saving?

When I was at the Nottingham conference, Psychiatry beyond the current Paradigm, in September, I went to a really interesting workshop with Clinical Psychologist Steven Coles, who spoke about “Power Dynamics: Marginalised Voices, Strengthened Voices”. Some of the language and concepts were quite challenging to me as a layperson, but I’m going to do my best to describe the workshop with links to Steven’s presentation and hand-outs. (Apologies in advance to Steven for any oversimplifications!) The workshop content was, though, very relevant to the on-going debate about the medicalisation of mental distress, and I really want to share some of the discussion and resources. Steven’s Twitter page header sums up the situation succinctly: “A Questioning Clinical Psychologist. Interested in why dominant ideas in mental health persist, despite sustained criticism”.

What the workshop was about
The blurb said: “This workshop will use theory, examples, exercises and debate to discuss the dynamics of power in mental health services. Power is central to understanding emotional distress and suffering, and the responses of mental health services. Power can restrict and be repressive, though all of us need power to live in the world. Within mental health services some voices dominate and others are quietened. The workshop will consider: what power is; how power is used in services; how some viewpoints marginalise alternative perspectives; and consider case material of how quietened voices could become louder.”

Power in everyday life
Steven encouraged us to talk first about how we experience power in our everyday lives. We considered this in pairs, and almost every area of life was relevant…So, for example, who tells us what to do at work, which newspaper to read, what we wear day-to-day….? Who says where we can or cannot park or what speed we drive our cars… if we drive or ride a bike or walk, when we get up in the mornings and what we eat..? Is it us, or someone else?

Looking at different sorts of power
Psychologist David Smail developed a way of looking at the different powers that operate in a person’s life. Some of these powers can be negative, whilst others can be positive. He separated them out into two areas:

Proximal powers – these are the powers that are close to home and which we are more likely to have control over, such as beliefs, memories, feelings, abilities (part of the person) and family, work, friends, housing (part of our environment and social life).

Distal powers – these are powers that are generally out of our control, such as economics, politics, and media/culture.

Mapping power
The feeling of helplessness or lack of control or power can play a big part in our lives whether we are distressed or not. “The flow of power is central to the experience of distress. Whilst at times services might be limited in their ability to alter this flow, mapping aspects of power can help people to clarify and understand their predicament. Furthermore, it is more likely to highlight realistic areas for change than an inward focus.”

Steven showed us a model for mapping power developed by David Smail and Teresa Hagan in 1997. The chart is split into four areas – material resources, home & family life, personal resources and social life. Each area is split again, and individuals can then chart how much power they feel they have in any specific area. Once this is logged, they could look and see if there is anything that can be done to change the balance of power, if this is felt to be a good thing. So… as an example, under home & family life – spouse/partner… An individual may have an abusive partner… so what could be done to change or move away from this relationship where power is wielded in an abusive way by one of the partners?

Power dynamics in mental health services
Then Steven spoke about the way in which power can work in the relationship between a service provider and someone experiencing mental distress. He shared a case study – and we looked at how an individual who is distressed is diagnosed with schizophrenia by services. The young man does not believe he has an illness, but is told by his psychiatrist he needs to take medication for a minimum of two years and possibly the rest of his life. His relationships with his family, and other professionals, were discussed, and we looked at whose viewpoints and whose voices dominated. It was clear that the services’ view of the man’s situation dominated to an incredible degree, to the extent that the man’s control over how he tried to resolve the distress was almost completely removed. Then we looked at how the man’s marginalised voice could be heard and a more democratic discussion take place amongst the professionals and the family.

Power in numbers
People coming together in groups with a common interest can work much more successfully to overcome powers imposed on them. Steven gave several examples, including the Hearing Voices Network and the Critical Psychiatry Network. Since the workshop a local example has sprung to mind - individual patients have come together at Powys Patients’ Council and can report many breakthroughs, the most recent success being changing the policy around mobile phone use on the ward at Bronllys Hospital.

Read Steven’s presentation for further information about the workshop – including his slides on Ideas Way Forward and “Tricky” Issues.

Some of my feelings at the end of Steven’s session:

• That professionals need to look very hard at the power they wield, and why.
• That the situation can be very complex… for example, a) a nurse may wish to support an individual in his aims (for example, not taking medication but seeking counselling) but feel overpowered by the wishes of the higher-ranking psychiatrist; b) the family members may concur with the psychiatrist that the man has an illness and needs medication in order to “recover” as they find it difficult to deal with his unusual behaviours.
• Individuals currently have very little power… much power instead resides with professionals, pharmaceutical companies and the government who make laws which state how people who behave in certain ways should be treated and/or detained against their will. 
• Individuals do, sometimes, have other options if they can access peer support groups and talk to others going through similar experiences. This increases their power, and subsequently their ability to change their lives going forward.

All in all an extremely thought-provoking session, and  I am keen now to read more on the subject. If you have views about power in relation to mental distress, we would really like to hear from you – please make your comments below or email us at pamhinfo@pavo.org.uk

Steven Coles is a Clinical Psychologist working in Adult Mental Health Services in Nottingham. Clinical psychologists aim to reduce psychological distress and to enhance and promote psychological well-being. Steven is co-editor of “Madness Contested: Power and Practice” and a key contributor to the Division of Clinical Psychology’s* position statement: “Classification of behaviour and experience in relation to functional psychiatric diagnoses: Time for a paradigm shift,” (British Psychological Society, 2013). The statement calls for a paradigm shift away from an outdated disease model, towards one which gives much more weight to service user experience and psychosocial approaches.

*The professional organisation for clinical psychologists in the UK.

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. In a conference here in 2013 Jacqui Dillon helped us further this debate and you can here her speak here.  In April 2014 we ran a conference called Finding Meaning in "Psychosis" when again we were able to consider this question with the help of Lucy Johnstone, Sami Timimi and Eleanor Londgen

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, my account is @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.

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