Unconventional Wisdom: Beyond Medical - The Debate Continues (I hope) ...

Leaving PAVO and Ventures New

After 5 years of working within PAVO’s Mental Health Team and 10 years of working in the “mental health” field, in July 2014 I decided it was time to try and make my living in a different way, one that was outside of the mental health system and outside of the public sector.

I am opening a Micropub in Llandrindod Wells which is a whole other story (… one of craft real ales, conversation, bringing people together and other lovely things …). If you are interested you can find out more on twitter, look for @arvonales.

So why I am still writing a “mental health” blog?

Some of you may already be aware of my views on our mental health system and the ideas underpinning it from my previous posts. You can find some of these here. If so, you will know that they do not align with the conventional mainstream wisdom on this topic and although I am no longer working within mental health, my quest to find ways of highlighting the “beyond medical” debate to professionals, the public, people in contact with mental health services and those close to them continues.

I believe that basing our mental health system and public awareness campaigns on the illogical idea of “mental illness” is doing much more harm than good. This belief comes from personal and professional experience of mental health and my own 30 year quest for the truth about my brother’s “mental illness”.

“Here I stand. I can do no other.” Martin Luther

What’s the debate? The myth of mental illness and the harm that it is doing

I believe that the concept of “mental illness” is incorrect and illogical. That the thoughts, feelings and actions that we categorise as “symptoms” of “mental illness” are not that. That these thoughts, feelings and actions are instead a natural and normal response to the difficult things that happen to us.

I believe that basing our mental health services, policies, laws, treatments, responses and public health campaigns on this bad idea is leading to much more harm than good. That allowing this bad idea to underpin all of these things means that we start from the wrong place when trying to help ourselves and others.

That is a place that largely remains in the “let’s manage the symptoms” arena rather than one that asks “can we make sense of this”. A place that doesn’t always allow us to look first for any medical reasons for these symptoms (you can read my blogs on organic reasons for “depression” here and “psychosis” here).

“Language shapes the way we think, and determines what we can think about.”  
Benjamin Lee Whorf

What do I propose?

Well one thing is that I commit to continuing to write blog posts that highlight “What’s Hot?” in the beyond medical debate (…What’s Hot ?!?!?! - me trying to make the topic as interesting as I can).

I will also continue to use my personal twitter account @powysmh to present evidence that shows the invalidity of the idea of “mental illness” and that highlights the harm that this idea is having.

I know that I am not the only one in Wales wanting to see awareness of this debate raised and I would love to hear from you about what you are doing and any ideas you have about what else you think we could do.

So now it is up to you. Read or don’t read the blog. Follow me on twitter. Talk to me, contact me, challenge me, offer me words of support. I leave it to you.

Beyond Medical Debate. Where would I start from now?

As this is the first of these “round-ups” I want to start by highlighting just 2 links that are in my opinion a great place to start if you want to find out more about this debate. I hope you find them interesting and useful:

The Council for Evidence-based Psychiatry (CEP)   @cep_uk

• The purpose: To reduce psychiatric harm by communicating the latest evidence to policymakers and practitioners, by sharing the testimony of those who have been harmed, and by supporting research into areas where evidence is lacking.
• Where to start: Try the tabs at the top for a series of short videos on “Unrecognised Facts” and “Recovery Story”. Also find out more about the members of CEP here. One member, psychiatrist Sami Timimi, talked at a conference I organised earlier this year in Powys, you can find out more about this here.

Behaviorism and Mental Health    @BigPhilHickey 

An alternative perspective on mental disorders by Philip Hickey PhD.

• The purpose: To provide a forum where current practices and ideas in the mental health field can be critically examined and discussed.
• Where to start: Absolutely anywhere, this is a great site for exploring this debate. On the home page you will see a list of his posts and in my opinion they are all insightful, logical, thorough and interesting. There is a Tell Your Story page here and the Moderation Policy here is well worth a read.

Beyond Medical Debate. What’s Hot This Month? 

• Global Summit on Diagnostic Alternatives August 4th and 5th 2014 in Washington, D.C. http://www.psychologytoday.com/blog/rethinking-psychology/201408/12-keys-mental-health-revolution
• Antipsychiatry and the antidepressants debate by Sami Timimi, Philip Thomas, James Davies and Peter Kinderman their letter of response to David Nutt and colleagues in letter to The Lancet. http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(14)70297-4/fulltext
• The Psychiatric Epidemic - does long-term use of medication decrease the chance of recovery? Tweeted by @BeyondMeds · http://beyondmeds.com/2014/05/23/psychiatric-epidemic/ on Aug 13.
• Outcome Orientated Mental Health Foundation. Of specific interest to anyone working with children and younger people. http://oocamhs.com/index.php/resources/videos. Tweeted by @AnneCooke14 on Aug 13
• Trauma, Psychosis, and Dissociation by Noel Hunter Aug 6th http://www.madinamerica.com/2014/08/trauma-psychosis-dissociation/
• The Campaign to Repeal Mental Health Laws in US. Urging US Senate to ratify the UN Convention on the Rights of Persons with Disabilities (CRPD), without reservations, understandings or declarations (RUDs) to prevent people from being deprived of their liberty, restrained, and treated against their will in the name of “psychiatric help”. https://www.change.org/en-GB/petitions/us-senate-ratify-the-un-convention-on-the-rights-of-persons-with-disabilities-without-reservations-understandings-or-declarations-ruds
• Therapy Looking For Disease: A Special Tribute to Thomas Szasz. 1h 23mins. https://www.youtube.com/watch?v=sZgsxI3ZouU&index=67&list=PLA23EF81C730135CA …

Contact me (… fingers crossed …)? Laura Gallagher

To find out more you can follow me on twitter @powysmh.

You can comment below and I will respond.

You can email me at powysmentalhealth@gmail.com

Or find me on facebook here.

Fingers crossed that other people out there are also interested in finding out more about this this debate….

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

2013 Conference Theme: Shaping Mental Health Services Participation

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

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

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

Learning From Previous Conferences ...

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

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

 

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

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

 

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

 

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

 

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

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

 

... no pressure then! 
 

So A Big Thank You To Jacqui Dillon...

 

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

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

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

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

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

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

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

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

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

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

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

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

 Further Information and Videos From Shaping Services Together 2013

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

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

• The National Mental Health Partnership Board


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

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

Unconventional Wisdom:  The Debate Continues 7th March 2014

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

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

 

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

 

Speakers Are:

 

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

 

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

 

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

 

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

 

This conference is an opportunity to explore:

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

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

 



Unconventional Wisdom: 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?