Monday, 31 March 2014

'Psychiatry in Context: Experience, meaning & communities' new book by Phil Thomas

New book by Phil Thomas 'Psychiatry in Context: Experience, meaning & communities' out on 16 June 2014:

"This book concerns the central role of contexts in understanding psychosis and distress. The contexts in which we all exist, historical, cultural, social, political, economic and interpersonal shape and give meaning to our lives for good or for bad.  The book proposes that the opportunities we have through narrative to talk about our experiences and the contexts in which they are embedded play a vital role in the task of making sense of our lives, in health, when we are distressed, or overwhelmed by psychosis. 

Scientific research has played an important role in helping us to understand how contexts of adversity, such as trauma, abuse, and experiences of racism can lead to psychosis, and such research will continue to contribute to our future understanding of and responses to psychosis.  Psychiatry in Context argues, however, that if we are to prioritise the role of values and ethics in mental health care, we must engage actively with the contexts of patients through narrative and by working closely with the communities in which patients live."

 

I've started new blog to house pharma specific topics

I've started a new blog The Pharma Chronicles to collate pharma posts, articles and other information in the one place.

Introduction to the first April newsletter:

"This is the first edition in a collection of writings, articles, blog posts, video links and other information about pharmaceutical topics in mental health from the critical perspective.  Because I am a psychiatric survivor and unpaid carer of many family members, now and in the past, who have been given mental disorder labels/diagnoses because of experiencing altered mind states/psychoses.  Resulting in coercive psychiatric drug treatment if non-compliant/unwilling and prognoses of severe and enduring mental illness which required inner strength and resistance to recover from.  

My aim is to question:
  • the wisdom of neuroleptic drugs as the main/only tool of choice in psychiatry
  • the ethical dilemmas and conflicts of interest when psychiatrists and other mental health professionals align themselves with pharma through “educational” events and consultancy roles
  • the issues around long term use of neuroleptics, the risks of chronicity, disabling health conditions and reduced quality of life
  • what Scottish Government is doing to protect the rights of patients, service users and carers in mental health matters, from the disabling effects of neuroleptic drugs and unethical prescribing, and from the profiteering of pharmaceutical companies for whom patients may only be a means to an end

I also want to highlight alternative approaches and ways of working with people in mental distress, altered mind states and emotional crises, that don’t have to involve psychiatric drugs."



Friday, 28 March 2014

it's a murky world of pharma funded "educational" events in Scotland's mental health world

I've recently had high heid yins in mental health telling me that pharma funded events promoting new psychiatric drugs are purely "educational" as if they expect me to believe it.  Are they serious?  I've never believed in mental illness and never liked being forcibly treated in psychiatric settings.  Why would I swallow that nonsense?

If an event funded by a pharmaceutical company like Janssen (subsidiary of Johnson & Johnson, revenue of over $71 billion in 2013) is promoting a new drug like Xeplion (depot injection) then it is all about sales and profit, nothing to do with education.  Let's be quite clear about it.

Who's educating who?  The drug company promoting their latest psychiatric drug (eg Xeplion) is "educating" psychiatry and their cohorts into swallowing their silver tongued rhetoric, that this new magic bullet will do the trick.  The performers at the event are part of the pharma team despite their protestations of independence.

I've heard this "independence" mantra before, in relation to mental health advocacy.  Service providers getting away with winning tendering contracts for "independent" advocacy and managing statutory funded projects.  Taking away the work from historical, grassroots, local groups.  Colluding with the funders.  Silencing the critical voices.


Psychiatric drug prescribers, mental health voluntary sector organisations, clinical psychologists and any other mental health professionals should remain separate from big pharma.  It's obvious.  Their patients, clients and service users are in the habit of being coerced, pressured and persuaded to take psychiatric drugs.  

Depot injections are the means by which the "non-compliant" are controlled and made to conform, despite their objections.  The side effects of these drugs and the long term chronicity are unpleasant and even deadly.  Ruling lives.  Shortening lives. 

I say to anyone in Scotland's mental health world who wants to partner big pharma in promoting their latest drug that they should taste it and see.  Take the pill or the jag in the bum, and see what it feels like.  Then you will have earned the right to be at big pharma promotional events, masquerading as "educational".

Go on.  I dare you.


Thursday, 27 March 2014

conflict of interest and unethical? questioning the motives for supporting a pharma funded event

Here is my latest response sent to the SAMH Chief Executive in our dialogue regarding his participation in a Janssen sponsored event promoting Xeplion (followed by a screenshot of the actual Email):

Billy here is the blog post link of our Email exchanges thus far:
http://chrysmuirheadwrites.blogspot.co.uk/2014/03/email-exchanges-with-billy-watson-samh.html


I accept your statement that you did not benefit financially however I'm not convinced that you have responded to my statement regarding your participation in a pharma sponsored event promoting a new drug being a conflict of interest and unethical.  SAMH has a history of working with service users and survivors, of mental illness and psychiatric treatment.  Your projects support vulnerable people with mental health issues, including people bereaved by suicide.  I am trying to understand your motives for supporting a pharma funded event.  Side effects of pharma drugs are known to include suicidal ideation. 

Here is a Mad in America blog post by Maria Bradshaw who lost her only child to SSRI induced suicide in 2008, entitled 'No More Tears? The Shame of Johnson & Johnson':
http://www.madinamerica.com/2014/01/tears-shame-johnson-johnson/

Opening paragraph of Maria's post:
"In 1972, prisoners at Holmesburg Prison in Philadelphia were paid $3 to have their eyes held open with clamps and hooks while Johnson & Johnson’s baby shampoo was dropped into them. In 2011, mothers of newborns were arrested when their babies tested positive for exposure to cannabis, a false result caused by the use of Johnson & Johnson’s Head-to-Toe Foaming Baby Wash. Young men have undergone mastectomies to remove breasts grown as a result of Johnson & Johnson antipsychotics, which were used as a result of Johnson & Johnson’s criminal promotion of its drugs for off-label purposes."


I look forward to hearing your explanation,

Chrys

[Johnson & Johnson is the parent company of Janssen with a revenue in excess of $71 billion in 2013]

 












SAMH stress balls

Email exchanges with SAMH Chief Executive Billy Watson re his participation in Janssen sponsored event promoting Xeplion

Here are screenshots of the Email exchanges, between SAMH Chief Executive Billy Watson and myself, regarding his participation in the Janssen sponsored event on 6 September 2013, promoting Xeplion.  For interest.




























Tuesday, 25 March 2014

Carers Legislation Event 24 March 2014 Dundee by tweet

Storify of Carers Legislation Event 24 March 2014 in Dundee 

organised by Dundee Carers Centre, funded by NHS Tayside

(Excerpts)
As an unpaid carer, of two sons who have mental disorder labels (in Dundee and Fife), and now a mental health activist and campaigner, I am very interested in the rights of carers and the cared-for, and therefore legislation in respect of carers in Scotland.  I participated at the first ever Carers Parliament in Scottish Parliament, 1 October 2012, then again took part in the second Carers Parliament on 1 October 2013 in the Hub, Castlehill, Edinburgh, along with a hundred or more carers, about 80% of us women, and some from other countries in Europe. The Programme theme was 'Your Rights' and First Minister Alex Salmond was the surprise keynote speaker, intimating the launch that day of the Statement of Intent for Carers and Young Carers. 

Alex Salmond FM at Carers Parliament 2013 launching Statement of Intent for Carers and Young Carers





Sunday, 23 March 2014

'Overcoming challenges in schizophrenia - a Scottish perspective', Janssen sponsored event September 2013

I was concerned to see this poster advertising a "meeting" 'Overcoming challenges in schizophrenia - a Scottish perspective' on 6 September 2013, in Stirling, with "speakers and catering sponsorship provided by Janssen" and advertising the psychotropic drug Xeplion (paliperidone):



Dr David Hall, NHS Dumfries & Galloway Consultant Psychiatrist and Clinical Director, lead for the Scottish Patient Safety Programme in Mental Health, chaired the programme and speakers included Billy Watson, SAMH Chief Executive, and Dr Mark Taylor, Consultant Psychiatrist, NHS Lothian.
 
Here's what Wikipedia says about paliperidone (Xeplion):
"Paliperidone palmitate (trade name Invega Sustenna, named Xeplion in Europe) is a long-acting injectable formulation of paliperidone palmitoyl ester indicated for once-monthly injection after an initial titration period. Paliperidone is used to treat mania and at lower doses as maintenance for bipolar disorder. It is also used for schizophrenia and schizoaffective disorder."

Netdoctor.co.uk says that the Xeplion injection "helps to control schizophrenia".  

And if the person who has the label doesn't believe they have schizophrenia?  Then they can be declared to be "without capacity" and be compelled to take the drugs, said to have anosognosia, a lack of insight.  Fortunately I wasn't on a CTO and had the power to taper my drugs and make a complete recovery in 2004.  

Others in my family haven't been so fortunate when labelled with schizophrenia and submitted to being injected [remembering my mother's 3 weekly depixol injection - 25 years of having to pull her pants down]

In September 2013 I was heavily involved, voluntarily, in organising the Scottish Crisis & Acute Care Network conference 'Improving Pathways', of which Dr Hall is the co-chair.  Getting the venue sorted, the programme, the workshops, involving people with lived experience, preparing my presentation and workshop materials.  [see blog post of my talk]

I am very unhappy to think that at this time I was, and still am, an unpaid carer on £59/week, picking up the pieces after traumatic dehumanising psychiatric treatment.  [I helped support my son to taper the drug haliperidol which was forced upon him in Feb12 and he got drug free within 6 months]  While Dr Hall, Billy Watson and others were busy working in partnership with the big pharma company Janssen-Cilag, a subsidiary of Johnson & Johnson which has annual revenue of over $71 billion.

Drugs are not the answer to human distress, trauma and emotional pain.  They might give temporary relief but in the longer term they are fraught with difficulties, causing chronicity, physical health issues and shortened life spans.  Risperidone, developed by Janssen, caused me to be clinically depressed then the venlafaxine prescribed gave me suicidal impulses, bone loss.  

If I hadn't taken control of my own mental health, in 2003, then I could have ended up coercively treated in the community with Xeplion for schizoaffective
disorder.  A label that was unhelpful and inaccurate.  The drugs didn't work for me and I'm not the only one.  See the new website The Council for Evidence-Based Psychiatry and the video testimonies from survivors, of the effects of, and the recovery from, psychiatric drugs and disorder labels.


Saturday, 22 March 2014

I'm joining the social movement for change, to challenge the stigma of mental illness (3/4 April 2014 Dunblane)

I've got a place at this 2 day 'see me' Scotland event:



 
 It says on the promotional material: 

"we will support the development of a ‘see me’ social movement that will be recognised across the world as inspiring, innovative and driven by people with lived experience". 

I'm up for being part of a social movement that challenges the stigma of mental illness.  The naming, shaming and blaming of people who experience trauma and pain.

Friday, 21 March 2014

psychiatrists should not be in cahoots with pharmaceutical companies

I am absolutely convinced that psychiatrists should not be in the pocket of big pharma.  (the same goes for leaders of mental health organisations)  It stands to reason.  Pharmaceutical companies are profit driven machines churning out new psychotropic drugs to bring in the dosh.  It's all about money.

But psychiatrists should be all about their patients.  Ethically and morally.  If they are drug-centred and believing the rhetoric of big pharma then the patients are not going to be their priority.  A patriarchal system like psychiatry, that makes decisions on behalf of their children/patients, has to be free from bias. 

A good father knows their child, their personality and abilities, what will be in their best interests.  When I was a child my father knew that I liked adventure and to run free.  That I wasn't defined by being a "girl" and so he and my mother got me toys like a farm with a straw roof, a doll's house, a cowgirl outfit with hat, skirt, waistcoat, sheriff's badge, holster and guns.  

I played with the boys at shooting the baddies, sometimes being a baddie myself, taking a turn.  I climbed trees, played football, dressing dolls, scraps, skipping, kick the can, ice skating.  A variety of childhood games which I remember most of all as being great fun.  School holidays and after school were the best of times.  However I still did well at school because I had freedom outside of it.

Therefore psychiatrists who are in relationships with big pharma have to break free from its influence.  For the sake of their patients.  Otherwise there will be a conflict of interest and the patients will suffer.  More than they need to.  Let's be honest.  Psychiatrist treatment can be traumatising.  I can testify to that, personally and on behalf of family members.

An institution that can force its rules on to its "members" under law has to be kept a close eye on.  The tools of the trade are psychotropic drugs but I would like to see a variety of tools on offer and the drugs used sparingly.  If psychiatrists are hand in hand with big pharma they will be under its influence.  Don't let's kid ourselves it's the other way round.  That would be daft.

Psychiatric drugs didn't suit me.  Risperidone (developed by Janssen) in 2002 made me clinically depressed.  I was then given venlafaxine (marketed by Pfizer) which didn't lift my mood, despite being put on maximum doses of it by my psychiatrist after taking an overdose because of a suicidal impulse.  To cap it all I was put on lithium, to "augment" the anti-depressant.  No difference.  Flat as a pancake.

It was up to me to take charge.  And so I did.  It wasn't easy, being unmotivated on the psychotropic drug cocktail but I managed to taper them, lastly lithium, getting off them all by 2004.  Then in March 2005 I fractured my fibula in 3 places when walking down a stair, didn't trip or fall, got a 6 inch metal plate.  Now I hear, in research articles, that maximum doses of venlafaxine can cause bone loss in older people (I was in my 50's).

Becoming clinically depressed through being prescribed risperidone and physically injured through being prescribed venlafaxine I would be very annoyed to hear that my psychiatrist had links or consultancy positions with either Janssen or Pfizer.  Because that would make them in cahoots with these pharmaceutical companies and directly responsible for the damage done to my mind and body by these psychotropic drugs given to me against my will or under coercion.


Thursday, 20 March 2014

Royal College of Psychiatrists publishes Code of Ethics

 [from mentalhealthtoday.co.uk News, 18 March 2014]

The Royal College of Psychiatrists has published a new Code of Ethics which defines and characterises what it is to be a good psychiatrist.

The Code, which draws on ethical standards for doctors set by the General Medical Council, has 12 principles:

1. Psychiatrists shall respect the essential humanity and dignity of every patient

2. Psychiatrists shall not exploit patients’ vulnerability

3. Psychiatrists shall provide the best attainable psychiatric care for their patients

4. Psychiatrists shall maintain the confidentiality of patients and their families

5. Psychiatrists shall seek valid consent from their patients before undertaking any procedure or treatment

6. Psychiatrists shall ensure patients and their carers can make the best available choice about treatment

7. Psychiatrists shall not misuse their professional knowledge and skills, whether for personal gain or to cause harm to others

8. Psychiatrists shall comply with ethical principles embodied in national and international guidelines governing research

9. Psychiatrists shall continue to develop, maintain and share their professional knowledge and skills with medical colleagues, trainees and students, as well as with other relevant health professionals and patients and their families

10.Psychiatrists have a duty to attend to the mental health and well-being of their colleagues, including trainees and students

11.Psychiatrists shall maintain the integrity of the medical profession

12.Psychiatrists shall work to improve mental health services and promote community awareness of mental illness and its treatment and prevention, and reduce the effects of stigma and discrimination. 

In drawing up the Code, the College consulted other documents that have influenced medical ethics and clinical practice, including the World Psychiatric Association’s and the American Academy of Psychiatry and the Law’s ethical guidance, and similar codes for sister disciplines such as psychology.

Professor Chris Freeman, chair of the Code of Ethics Working Group, said: “The intention of this Code is that it should help to guide and shape such judgements for the good of patients, their families and carers, and for the profession itself. Although written for psychiatrists, it could be used as a template for ethical guidance for others working with mental health service users.”


"I believe that taking money from Big Pharma is ethically wrong"

[a statement written for ALLIANCE event 'A Question of Ethics: Members discussion on the ALLIANCE's relationship with the pharmaceutical industry' on 7 February 2014]

  • Psychiatric drugs are used in psychiatric settings to coerce and control psychiatric patients.  The drugs alter brain chemicals and cause debilitating side effects which result in more psych drugs being taken to control the effects.  In my case the anti-psychotics agitated and depressed me.  I was given the anti-depressant venlafaxine which depressed me more, gave me suicidal impulses, I took an overdose.  Then I was given the "mood stabiliser" lithium, a toxic drug that requires monthly blood tests.  None of these drugs worked to lift my mood.  I had to take charge of my own mental health, go against the advice of psychiatrists, to recover and survive. 
  • At least 50% of people are unhappy that they were forced to take psych drugs against their will.  All of my close family members have engaged with psychiatry.  Half of us stayed in the system, the other half went our own way.  Of the half who stayed in the system and on the drugs they all lived with physical disabilities.  My mother walked with a stick from her 40's onwards, she was on a 3wkly depot injection until she died aged 68.  If you go into a mental health day facility you will see many older women walking with sticks.  My youngest sister, now in her 40's walks with a stick, her balance is effected, she is on clozapine.
  • I recently found out from research articles [www.jnrbm.com/content/9/1/3] that venlafaxine causes bone loss.  That explains my bad leg break in 2005, the year after I came off the drug.  Three fractures on the fibula, when only walking down a stair, requiring a 6in metal pin to be inserted, leaving me with arthritis.  Why are psych drugs not researched thoroughly before coming on the market?  It seems that profit rules and safety is a secondary concern.

  • Mental health law allows psychiatric professionals to forcibly treat people with a "mental disorder".  I was a psychiatric inpatient on 3 occasions and on each of them I went voluntarily into a psychiatric hospital whereupon I was forcibly injected with chlorpromazine, in 1978 and 1984, then pressurised to take risperidone in 2002, after being detained for 72hrs.  I voluntarily went into the hospital, looking for respite and support.  Instead I was coerced and controlled, with psychiatric drugs the tools of choice.

  • I therefore do not believe that funding from Big Pharma can ever be free from conflicts of interest.  If one person is being coerced to take a pharma product then we are all, or should be, affected by this human rights issue.  I am not convinced that psychiatric drugs are as thoroughly researched as they should be before being given to, or forced upon, people.


Monday, 17 March 2014

Open Dialogue London 15/16 March 2014 Tweets on Storify

caught on camera by Cheryl
On the weekend past, Saturday 15 and Sunday 16 March 2014, I joined with other folk of like minds to participate in the first of 3 seminars on Open Dialogue.  It was a time of renewing old acquaintances and making new ones.  Much to consider and reflect upon.

Here is a link to a Storify of the tweets I made during the event, with photos: 

Open Dialogue London 15/16 March 2014.

 
Some excerpts:


catching up & getting to know new folks at London now Nick Putman introduction

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seminar story, interest in psychosis, good anarchist friend. Inspired by RD Laing
 


London now Markku Sutela & Mia Kurtti telling their story.
 

lunch break & walk in sun along Hackney high street with church bells ringing chatting to exiled Scot
 


Responsibility "to say what you think" "exposing yourself. Yes I agree! Taking back the power

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Friday, 14 March 2014

Shifting the Paradigm While Resisting the Sheep and Goats Scenario


This week I'd gone to Scotland's capital, Edinburgh, to take part in a government led seminar on reframing approaches to people in distress, from the psychiatric survivor and carer perspective.  I knew it wouldn't be easy, speaking out about what hasn't worked, in my experience, and trying to suggest alternative ways of working with psychoses and altered mind states.  It didn't help that our new national mental health strategy differentiates between "common mental health problems" and "severe and enduring mental illness" which I call separating the sheep and the goats.  

We are all sheep.  Mental health difficulties, emotional distress and crisis situations are common to all.  Altered mind states, paranoia, spiritual beliefs, hearing voices and other phenomena may be experienced by many people in life, due to a range of reasons, traumatic or painful, creative or self inflicted.  

It’s normal to feel things deeply when a person is sensitive to pain, has been traumatised or subject to abuse.   I was a goat who saw myself as a sheep and so I made a complete recovery from mental illness and psychiatric treatment.  It didn't make me popular with the clinical professionals who dominated the seminar proceedings and still viewed me as a goat.  I didn't disappoint them.

The stigma and discrimination of the mental illness labelling really gets my goat, linked as it is with naming and shaming, regardless of the millions poured in to anti-stigma campaigns and attempts to make the unacceptable acceptable.  It's fine if you leave the label behind and get back on in normal society, saying nothing about your past psychiatric experience or mad episode.  Don't put it in your CV or job application form for that really is madness, unless of course you're applying for a peer worker post and then it's compulsory.

I made the mistake, in 2005, of sharing my mental health recovery story on a Scottish national recovery organisation's website.  And then I compounded it by updating my tale in 2008, having realised that the game was up the pole anyway, in for a penny in for a pound.  Anyone googling my name would come up with mental health problems.  I'd been outed, exposed and there was no escape.  

I'd have to make the best of it and decided to dive right in by starting up a peer support voluntary organisation while going out and about delivering self management workshops on WRAP and PS.  A two-pronged tactic in the peer movement and taking back the power.  Before too long I was getting excluded from groups and being accused of this and that, in an attempt to reign me in.  It did the opposite and I ran even faster, despite having to curtail some activities due to caring responsibilities.

Back to the seminar and the focus on people who were in distress but weren't "on anyone's books", according to the presentation from a strategy manager on an improvement project in his local health board area.  Which just happened to be an area where one of my sons tried to access crisis support a few months after their project, on Christmas Day 2012, and couldn't.  We ended up having to call the police in for help.  I highlighted this in a question which no doubt made me more unpopular.  [Water off a duck's back]  I also drew attention to the sheep and goats scenario, telling my story of recovery despite a lifelong mental illness prognosis.  Not sure if everyone was impressed or convinced.

I didn't recognise any other people with "lived experience" at the seminar or no-one who was admitting to having moments of madness.  There's no doubt it's like walking the plank, admitting to madness in a room full of clinical mental health and psychiatric professionals.  A sense of straitjackets at the ready or muzzles to silence the voices.  It's a matter of being persistent, I've found, and looking for opportunities to make a point or tell a story.  The power of a narrative I think can't be underestimated.  Especially from the horse's mouth or a goat who thinks they're a sheep.

The main thing is to enjoy yourself in life and I do, whatever the challenge, even if it feels like a real annoyance at the time.  What I did to get over the irritation was to write about it when I got home, and keep on writing until it got out of my system.  I did a 2 page piece, sent to high heid yins, that same evening then the next day put it in a blog post - "Why I am dead against the two tier recovery system in Scotland with its separation of sheep and goats, the folk with “common mental health problems” from the folk with “severe and enduring mental illness”.  As a follow-up I wrote another Email to leaders, entitled "I'm doing my bit, what about you?", in which I detailed my achievements since diving in to Scotland's mental health world up to my neck and what my plans were, forwarding it on to other folks.  That made me feel better.

I said "I expect Scottish Government to make straight paths and level playing fields so that people in distress are neither sheep nor goats, and more than that, for SG to have an influence on psychiatry so that goats can become sheep, in the short term, and in the long term that it will only be people in distress and real person-centred care for anyone and everyone.".  Finishing off with a plea to the leaders: "Yes there are no magic bullets but why does it have to be a quick fix and a heat target?  How about slowing things down and taking time to think it through?  Process rather than outcome.  Stories rather than evidence.  Quality not just quantity.  Holistic, empathic, relational care where listening is a priority and risks are factored in.  Yes, being human, there’s the challenge.  Over to you."

Tomorrow is a planned trip to London for a weekend seminar on Open Dialogue, the first of three, and a chance to catch up with fellow activists who like me are looking for alternative ways of working with people in psychoses, altered mind states and mental distress.  This week I've been encouraged by engagement with fellow Mad in America bloggers, with Scottish comrades and psychiatric survivor activists via social networking.  We are not alone.  It's great to be in solidarity.  Here's tae us, Wha's like us.  Damn few an' they're a' deid, Mair's the pity!


Wednesday, 12 March 2014

reflections on the reframing distress seminar yesterday and the separation of the sheep and the goats

Here's a piece I wrote last night and sent to Scottish Government high heid yins after their seminar yesterday on 'Reframing our approach to supporting/responding to people in distress' at the Royal Scots Club in Edinburgh:

"Why I am dead against the two tier recovery system in Scotland with its separation of sheep and goats, the folk with “common mental health problems” from the folk with “severe and enduring mental illness”


We are all sheep.  Mental health difficulties, emotional distress and crisis situations are common to all.  Altered mind states, paranoia, spiritual beliefs, hearing voices and other phenomena may be experienced by many people in life, due to a range of reasons, traumatic or painful, creative or self inflicted.  It’s normal to feel things deeply when a person is sensitive to pain, has been traumatised or subject to abuse.

Some of us when in mental distress or altered mind states have had no other option but to engage with psychiatry.  We were forced into it or persuaded to be a voluntary patient and then were coerced.  We may not have wanted to swallow psychiatric drugs but our wishes didn’t come into it. 

Some of us may have resigned ourselves to taking them, needing them, accepting that we have a mental disorder and require lifelong treatment.  Some may welcome the diagnosis, like to be under the authority of a psychiatrist, trust in their judgement, and believe that psychiatric drugs are necessary. 

Others of us do not accept the label, reject the prognosis, taper the psych drugs (against the advice of psychiatry) and recover.  Most will disappear back into “normal” life and this is what I did back in 1978 and 1984 after brushes with psychiatry, and did the same in 2004 but then was drawn back into Scotland’s mental health world after sharing my recovery story on SRN, in 2005.  To begin with, on the periphery, while working full-time in an FE college and gaining another postgraduate qualification.  But the peer support movement drew me in, the promise of meaningful involvement, empowerment and recovery.  Just what I had experienced personally after mental health issues in 1978, 1984 and 2002.  I knew it was possible and believed in the power of peers.  So in 2008 I committed myself to promoting PS and to being part of Scotland’s recovery movement.

But I soon found out that Scotland didn’t want me to be part of the team unless I conformed, fell into line and did what I was told.  I remember in 2008, after the WRAP Facilitator training, saying to a national organisation leader that I didn’t recover from mental ill health just to be put in a straitjacket by them.   And so the restraining began.  I’d been a community development worker since 1980, setting up many projects in different areas with all ages of people, a professional with qualifications to show for it.  Yet it all counted for nothing in the alternative universe of mental health world shenanigans.  Where the stigma of mental illness is a marker of disrespect and advancement only happens if you are a crony or are not a boat rocker.

Six years later and I am a psychiatric survivor activist and human rights campaigner in mental health matters.  Blame it on the recovery movement and on the human rights abuse of a loved one in a psychiatric setting.  What use recovery if it’s only for the sheep?  No use if you’re a goat and having to suffer for it.

I expect Scottish Government to make straight paths and level playing fields so that people in distress are neither sheep nor goats, and more than that, for SG to have an influence on psychiatry so that goats can become sheep, in the short term, and in the long term that it will only be people in distress and real person-centred care for anyone and everyone.

We need more psychiatric survivors at the table and in the conversations, people who have made a complete recovery from mental illness and got off the psychiatric drugs, with or without the support of psychiatrists.  Having survivor voices will bring balance to the proceedings and bring psychiatrists back down to earth where they belong.  Alongside the rest of us, Jock Tamsin’s bairns.

I’m still not sure why the survivor voices have been silenced in Scotland’s mental health world when they are alive and well in other UK countries.  England has NSUN and user/survivor researchers in university positions.  Recently I heard that Diana Rose has become a Professor in User-Led Research at the Institute of Psychiatry, King’s College, London.  Dr Rose has written articles on ECT from the user perspective.  Meanwhile, at Scotland’s universities, it seems that we are not even on the first rung of the meaningful involvement ladder.  Except for clinical psychology that is making an effort.

I was asked today by a manager if I was despairing.  I said no.  But I don’t have much hope that change is coming anytime soon in Scotland to bring about the meaningful involvement of the experts by experience in mental health service design and delivery.  You can write about it in government documents and speak about it at government events but until I actually see it happening then I just won’t believe it.  The emperor is naked.  I have to say it. 

I know what empowerment and meaningful involvement is, having worked in communities and with people for over 30 years.  I also know what psychiatric treatment and mental health recovery is about, having engaged with the system for over 40 years as a patient, carer, advocate and peer supporter.  I’ve been there, done that, got the T-shirt.  A mother and grandmother who has seen 3 generations of her family taken in hand by psychiatry.  It’s not been a positive experience. 

And now Scotland seems to be spearheading the brain surgery for mental illness or NMD for short.  Fiddling with neural pathways while transgenic mice are being sacrificed in the search for biomarkers.  Clutching at straws to justify the schizophrenia label and lifelong prognosis when the drugs don’t cure and bipolar disorder is the proof. 

Yes there are no magic bullets but why does it have to be a quick fix and a heat target?  How about slowing things down and taking time to think it through?  Process rather than outcome.  Stories rather than evidence.  Quality not just quantity.  Holistic, empathic, relational care where listening is a priority and risks are factored in.  Yes, being human, there’s the challenge.  Over to you."