Power and participation Part 2

by Jane Cooke

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

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

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

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

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

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

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

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

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

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

Volunteering while getting benefits

The title of this blog post is also the title of a UK government guide which can be downloaded from the internet here. Quite simply it lays down the rules around volunteering whilst on benefits:

"If you’re getting State benefits, you can be a volunteer and, in nearly all cases, your benefits will not be affected. However, there are some cases where your benefits can be affected, for example, if you get a subsistence allowance or if you’re doing what someone else would normally be paid for."

And yet people who are receiving benefits are sometimes made to feel – by society, by people they know, by workers at the Job Centres they attend - that if they are able to volunteer then of course, they should also be able to work.

Jan Rogers receives benefits and volunteers for the mental health charity Ponthafren Association at the organisation’s centre in Newtown. She is not in paid employment at this time. She wanted to share with a wider audience the value of volunteering to her.

Without going into detail of what, why and where, I will just say, when I first became unwell, I could see NO way out. Well, in fact, I did find a way out and that was to end “it”. To put a stop to the hassle and grief I was causing to my family.

Sometimes I think I functioned quite well in the sense that food was always on the table and the house and children were always clean, at least when they left the house. But I wasn’t living, it was existing - going through the motions. When my husband was in work I would quickly do housework and what I needed to do and then hide. Sometimes I would lie under the bed all day watching the clock so that I would be out in time to cook tea and pick the children up. This was harder when I had younger children so I used to draw the curtains and sit and interact with the children hoping that they would not pick up on how I was feeling. This worked for a few years but every time one of the children called me “Mum” I cringed.

One day Hell had just opened its doors. I went from a person who was out going and enjoyed life to almost becoming a recluse. Although I made sure the children and hubby were fed and looked after, I was sinking into a dark, dark world. I did not bathe or eat until I was so light headed I couldn’t function. My husband gave up his job and although he was amazing he was looking for answers to the complete change in a person, which to him had happened “moreorless overnight”.

I was regularly taken to hospital and sectioned and stays varied from one to three months in the early days. As time went on, with my husband’s and family’s support, and the help of the Community Mental Health Team, I was able to function slightly better, but each day was a struggle for us all. Sometimes I would leave the house and seem and feel okay, drop the children off at school but then, a dark cloud would surround me and I had no idea where I was or who I was. My husband would phone the police after looking, sometimes all night, and I would be back in hospital on a section.

I felt my life was over and although I was lucky in a sense that I had a great supporting family, this in one way was making me feel more guilty as I was letting them down and just causing more grief to the people that were at my side and holding me up. 

Jan in the garden at Ponthafren

All I kept thinking was why, why, why?

About six or seven years ago, I took my youngest sons to football practice. I was standing on my own, not really wanting to get into a conversation with people. There was a woman there, who I did not know, she seemed to be in charge of the football sessions. I remember the day well as it was windy, cold and raining, real football weather. The lady came across and introduced her self as Nicky Morris and explained that she was chair of the junior football club, Newtown Whitestars.

We got chatting and this was the first time I had really trusted anybody outside my family. I felt I could talk to her as if I had known her for a lifetime. Nicky went on to explain that she was Co-ordinator of Ponthafren Association , which was a registered charity for people with mental health problems. She suggested I pop in for a chat and see what Ponthafren had to offer for me. I was always very much into my sport, gym and running as well as a very keen gardener.

I went along to Ponthafren with my hubby and met up with Nicky and Jane and chatted. I said I would love to come along to the centre but needed a purpose. Nicky suggested volunteering for a couple of hours a week to go along with people to the gym. So, this is what I did. Mike was always outside at least half an hour before I was due to be picked up as he was very worried.

Over quite some time, I was volunteering more hours and even though some days I would not go in as I was feeling unwell, generally I felt a small sense of achievement. As time went on Mike was feeling more relaxed and able to take a step back. He too then became a volunteer at Pont. I think we sometimes forget about the person that has cared and carried someone with mental health illness for such a long time and almost expect them to pick up where they left off in a sense. This is not reality as when Mike gave up his job he gave up his “Life”, in the sense of friends, associates and a social life.

At Ponthafren I can be myself, I don’t have to pretend at all. If I want to smile I can, but at the same time if I don’t feel like smiling or putting on a face for people, then I don’t feel like I have to.

Some of the things I deal with every day and night:

• Sense of worthlessness.
• Scrounger to society/tax payers as I should be working.
• Sense of letting my family and friends down.
• Voices.
• Hallucinations, to the degree of bathing in shorts and tee shirt and dressing inside a large robe that is zipped up the front, from my neck to the floor. 
• Not sure if I’m having a conversation with real people or not.

Some of the things I feel and have partly gained by volunteering are:

• Self worth.
• Confidence.
• Self-belief.
• Passion for believing in my principles and beliefs and the fact that they do count.
• Helping my family understand my “illness”.
• Helping “ME” understand my “illness”.
• Being “Who” I am, and most of the time thinking, “others will have to accept me as is”.

I have been nominated and won awards but although I am very grateful for being put forward and gaining these awards I personally (it has taken me years to accept praise and to be honest, deep down, I still cringe even though I smile) feel that these awards I accept are on behalf of every volunteer I know. This, I feel, is how I am able to accept them.

Why do I volunteer?

At the moment I don’t think I would be able to cope with employment. I’m not sure it would be fair on an employer or me. I have never and never will be happy with myself drawing benefits but volunteering goes some way for me to prove my worth to Government, Job Centre, tax payers. I have received, and continue to do so, so much help from Ponthafren – and this is one thing I can do to part pay back for all I receive.

I volunteer in the garden because I am a keen gardener and others get so much out of the garden at Ponthafren. Some people have no garden or in fact a seating area. With volunteering, if somebody asks me to do something, I do not have a problem asking them to write it down if I’m not sure what they said and they don’t mind doing this. As an employee, this would not be okay.

Basically I volunteer because I can. I have failed so much over the years, in most aspects of my life. Volunteering, I feel I do not fail at all. Maybe I can make a difference to someone else!!!!

‘Volunteering’ = Coping , Living, Surviving, so really it is NOT Volunteering in my Mind or Heart !!!!!!

Thank you, Jan, for sharing your volunteering story with us. If you would like to find out more about volunteering, contact the Powys Volunteer Centre which is managed by Powys Association of Voluntary Organisations.

Are you on benefits? Do you volunteer? Tell us about your experiences in the comments box below.

Unconventional Wisdom: Organic Reasons for Depressive Symptoms

As many readers will know by now, I think we need to be challenging and debating the logic that accepts “mental illness” as a valid concept.  I am concerned that our mainstream acceptance of the idea of “mental illness”, within our health and social care services, our mental health laws and our society, leads us to act in ways that, although well intentioned, cause bad consequences.  Ultimately this may result in more harm than good for people affected by the idea that experiences and actions can be diagnosed as "symptoms" of “mental illness”. 

Last Thursday, in our “Shaping Services Together” Conference, I think that we succeeded in furthering this debate in Powys.  With the help of Jacqui Dillon and Jo Mussen the morning started with us being asked to consider the following question:  

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

In this vein, I want to continue the theme from my last blog about organic reasons for psychosis by exploring organic reasons for depressive symptoms, again to try and make sure that:

In our drive to suggest that people are asked "what has happened to you" rather than “what is wrong with you”, let's not miss the question “is there anything physically/organically wrong with you?” 

Map of Medicine, which is the NHS system that claims to provide access to comprehensive, evidence-based guidance and clinical decision support, lists the following as typical symptoms of depression:

• an unusually sad mood that does not go away 
• loss of enjoyment and interest in activities that used to be enjoyable 
• tiredness and lack of energy 
• crying spells, withdrawal from others, neglect of responsibilities, loss of interest in personal appearance, loss of motivation 
• chronic fatigue, lack of energy, sleeping too much or too little, overeating or loss of appetite, constipation, weight loss or gain, irregular menstrual cycle, loss of sexual desire, unexplained aches and pains

A diagnosis of depression by a medical professional (in the case of depression, most often made by GPs) will be based on the number of these symptoms that you are experiencing/exhibiting, and whether you have experienced the symptoms for at least two weeks.

What are the known organic causes of these typical depressive symptoms?

Firstly let me try and clarify that by organic causes of depression I mean where the depressive symptoms are the direct result of an organic cause.  I do not include conditions where it is the actual coping with the organic condition, such as  cancer, dementia, heart disease, that results in us experiencing emotional stress and natural feelings of hopelessness, despair, loss of enjoyment and tiredness, feelings that could be diagnosed as “depression”.  Instead I am trying to find out about organic/biological conditions that cause a change in our physiological functioning that lead to the symptoms of depression that I  listed above. 

The Clinical Knowledge Summary from the National Institute for Health and Social Care Excellence (NICE) lists the following as organic reasons for depressive symptoms:

• Carbon monoxide poisoning   
• hyperthyroidism and hypothyroidism – state in which the thyroid gland production of thyroid hormones, thyroxine and triiodothyronine, is abnormal
• Rare side effects of prescription medication, such as: 
• antihypertensives used to treat high blood pressure 
• lipid-soluble beta used to treat a number of conditions including heart disease and high blood pressure 
• central nervous system depressants used to slow down brain activity prescribed for conditions including insomnia, muscle tension, pain, epliespy, anxiety and mood “disorders” 
• Opioid analgesics, generally uised for pain management 
• Isotretinoin primarily used for acne

However,as with my blog on organic reasons for psychosis, other organic reasons for depressive symptoms are to be found elsewhere on NHS sites.  These include:

• Cushing's syndrome, caused by very high levels of a hormone called cortisol 
• Hypercalcemia caused by abnormal levels of serum calcium concentration.  Also a complication of Pagets Disease 
• Hyponatremia where sodium ion concentration in the plasma is lower than normal 
• Diabetes when the pancreas does not produce enough insulin to maintain a normal blood glucose level, or your body is unable to use the insulin that is produced 
• Neurologic disordera such as Epilespy, Stroke, subdural hematoma, multiple sclerosis, brain tumors (especially frontal), Parkinson's disease, Huntington's disease, epilepsy, syphilis, dementias 
• Nutritional disorder such as Vitamin B12 deficiency, pellagra caused by a chronic lack of niacin (vitamin B3) 
• Other disorders such as viral infection and carcinoma

How do these organic/biological causes result in us experiencing depressive symptoms?

In many different ways it seems.  Some of the physical conditions listed above result in an imbalance of the hormones that we need to keep our bodily process working efficiently (e.g. thyroid hormones, insulin, cortisol).  When our hormone production or our ability to effectively use these hormones goes wrong, then a direct result can be symptoms of low mood, lack of enjoyment, tiredness, mood swings and lethargy.

Some of the conditions listed above cause damage to our brains in the areas that are know affect our mood so again the effect of this damage results directly in depressive symptoms. 

When someone experiencing depressive symptoms presents to a health care professional, what investigations will occur to determine whether there is an organic cause?

So back to the NHS Map of Medicine then.  It states that people presenting to health professionals with suspected depression may, “depending on the judgment of the clinical professional of the nature of their presentations”, expect to have medical investigations done to rule out an organic cause for their depressive symptoms.  The investigations are listed on this site but they include biochemistry tests, such as blood glucose, liver function tests, thyroid function tests and hematology tests such as full blood count.

Can depressive symptoms be misdiagnosed as a "mental illness" in this case “depression” when they are actually caused by organic/physical conditions? 

Unfortunately it seems that the answer to this is yes, again as it was with psychotic symptoms.  It is not difficult to find examples of organic problems being misdiagnosed as “depression” from across the academic world, the press and from people’s stories.    So examples where someone is diagnosed with "depression" and treated for this first, rather than the organic reason being found and appropriate treatment for the biological condition being given (e.g. removal of brain tumor, treatment for Hyperthyroidism).  

How often can the psychological symptoms we experience actually be explained by organic/physical/medical reasons? 

There is of course a lot of information about this on the internet but I really am not sure we know the definite answer to this.  It seems that a conservative estimate that about 10% of all psychological symptoms may be due to medical reasons, as this study suggests.   However the results of one study suggest that about 50% of individuals with a “mental illness” diagnosis actually have general medical conditions that are largely undiagnosed that may cause or exacerbate psychiatric symptoms.

So over to you again. 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" rather than “what is wrong with you”, lets not miss the question “is there anything physically/organically wrong with you”.
• What are the known organic causes of typical depressive symptoms and how do these organic causes make us feel “depressed”?
• When someone experiencing depressive symptoms presents to a health care professional, what investigations will occur to determine whether there is an organic cause?
• Can depressive symptoms be misdiagnosed as a "mental illness" in this case “depression” when they are actually caused by organic/physical conditions?
• How often can the psychological symptoms we experience actually be explained by organic/physical/medical reasons?

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 ...

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? 

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

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