Friday, 30 November 2012

"I am right, you are wrong" that's what they all say

[a quick blog post as I'm off out today and need to get my bacon and eggs ...]

Yesterday I joined with the Speak Out Against Psychiatry folks to protest at the conference on Perinatal Psychiatry, being held in Hallam Street, London.  A great time of solidarity with Cheryl Prax and her comrades, as we challenged the psychiatric drugging of mothers and children, and the use of ECT/electro shock in mental health treatment.

See 'bringing in the heavies at the perinatal psychiatry conference' blog post

For me it was an encouraging activity, in so many ways.  The sense of not being alone in my activism and campaigning.  Learning about ways to effectively demonstrate.  Engaging with psychiatrists and finding things in common.  Resisting the force and domination of the attitude that says "I am right, you are wrong", that pervades psychiatry and keeps us all, men and women, under their power.

Tuesday, 27 November 2012

if mental illness doesn't exist then why do we have brain surgery for it?

I and many other survivors of mental ill health and the psychiatric system don't believe there is such a thing as 'mental illness'.  We refused to believe it when we had episodes of mental distress and were subsequently psychiatrically drugged, sometimes forcibly.  And still we didn't believe it and recovered, completely.

Therefore if we are right and there isn't such a thing or psychiatric construct as mental illness then why do we need brain surgery for it?  As in, removing the bits of brains that have feelings and experience emotional pain.  I think that's what it does although I'll have to wait until I've had a meeting with the NMD specialists at the Advanced Interventions Service, Ninewells Hospital, before I can confirm the ins and outs of it.  [watch this space]

I'm not a scientist although I am someone who likes to know what the truth of a situation is.  As far as that can be assessed.  For I know that nothing is absolute or provable, in science or in life.  And sometimes it is just a matter of opinion, or one opinion against another.  But with brain surgery I really want it to be more than an opinion.  Because the procedure cannot be reversed, it's irreversible.

Does it mean then that real recovery from mental ill health and mental distress requires a disbelief in mental illness?  To get out of the psychiatric system and out from under the psychiatric label then we have to refuse to be called mentally ill and resist the treatment?  That makes sense to me because it was my experience and story of navigating the system

Sunday, 25 November 2012

treatment resistant? no just useless treatment

I can't help it but I've got to say something about the term 'treatment resistant' in psychiatric settings.  It really gets on my wick when this is used.  As if a person is actually resisting the treatment.  Well, if they were then they wouldn't be swallowing the pills, which are the things that are not working or useless.

So stop blaming the patients for treatment that is not doing the job.  And I'm directing this at psychiatrists, the qualified, medical ones who have the letters after their name and insist that mental distress is biological.  [who's kidding who]

It's folk like me who resist the treatment and get it forced upon us.  Or we are compelled to take the psych drugs if we're unable by sleight of hand to palm and flush them away.  The best place for them, sorry to the fishes.  

It's bad enough to be in mental distress or low mood without being accused of trying to subvert the treatment in some way.  A double whammy on the patients who are already conforming and listening to daddy doctor, expecting him to take their pain away.  [I use daddy as a descriptor of the paternalistic psychiatric system]

I say "resist the treatment" and be worthy of the name "treatment resistant" then you'll find the label loses power and disappears away into the notes, never to be seen again, unless of course you get mad again ....


Saturday, 24 November 2012

mental health act - forced treatment - sweeties from strangers

Again I find myself reflecting on the Scottish mental health act, its principles, the safeguards and their relation to forced treatment.  It's a puzzle as to how they all fit together and make sense.  How the safeguards can keep people safe when being forcibly treated.  And how a carer can be respected in the midst of disrespectful attitudes and practice.  I'm trying to get my head around it.

Is the act more about aspirations than actions?  By that I mean something to work towards rather than something that has to be practised.  But then surely it wouldn't be a legal document or passed by parliament.  It has to be more than just words on a paper or rules in a book, that hold no power in the psychiatric system where patients are under compulsion, to conform or play the game.  Of taking the drugs, or palming them, of going along with the labels, or seeming to, of getting along with the nurses and doctors, while secretly knowing that they've got it all wrong.

And then there are the folk who will not conform or play the game, of swallowing the pills or agreeing that they're mentally ill.  Who persist in wanting to be a free agent and responsible for their own destiny.  Which is not allowed in the 'place of safety', where risk and safety have paradoxical meaning.  As in, you're only safe if you hand over control of your life to a stranger in uniform.  And this doesn't make sense, especially to the mad or distressed.  For, weren't we always told not to take sweeties from strangers?




Tuesday, 20 November 2012

government funding and independence

I've been giving some thought to the dilemma of government funding and independent working.  And I do think it's a dilemma, when the organisation receiving government funding is under pressure to conform and subsequently becomes another arm or voice of the government.

I'm thinking specifically of national mental health organisations that may be funded to the tune of one million, half a million or a couple of hundred thousand pounds.  Organisations that seem to be under the influence of government when they should have a degree of independence and autonomy.  I'm really not impressed with the reinforcing of stigma, the hijacking of the recovery movement and members without portfolio.


Of course I realise that by saying these things I am at risk of accusations like "selfish and unreasonable".  But hey I'll risk it.


Perth Academy
Because I've always thought that it was important to have a voice, to be non-conformist and free.  It's what living in Scotland is all about it, in my opinion.  And I was born and brought up in Perth, the fair city, memories of a happy childhood, many and varied activities growing up and a good secondary education at Perth Academy.  Which set me off on a lifetime of learning.  Over 30yrs of community development and church work.  Now I'm 60 and look forward to more of the same.

Sunday, 18 November 2012

a time to speak, a time to give up, a time to plant and a time to laugh

American 20th-century novelist Thomas Wolfe wrote about the old testament book of Ecclesiastes: "Of all I have ever seen or learned, that book seems to me the noblest, the wisest, and the most powerful expression of man’s life upon this earth — and also the highest flower of poetry, eloquence, and truth. I am not given to dogmatic judgements in the matter of literary creation, but if I had to make one I could say that Ecclesiastes is the greatest single piece of writing I have ever known, and the wisdom expressed in it the most lasting and profound.".

There is a passage in this wisdom book which will be familiar to many, about there being a time for everything.  I find this to be an encouraging statement about the ebb and flow in life, the changing seasons and the sense that it's all part of a bigger plan:

There is a time for everything,
    and a season for every activity under the heavens:

    a time to be born and a time to die,
    a time to plant and a time to uproot,
    a time to kill and a time to heal,
    a time to tear down and a time to build,
    a time to weep and a time to laugh,
    a time to mourn and a time to dance,
    a time to scatter stones and a time to gather them,
    a time to embrace and a time to refrain from embracing,
    a time to search and a time to give up,
    a time to keep and a time to throw away,
    a time to tear and a time to mend,
    a time to be silent and a time to speak,
    a time to love and a time to hate,
    a time for war and a time for peace.

And so in the last couple of weeks, for me, it has been a time to speak, a time to uproot, a time to give up, a time to search, a time to plant and above all a time to laugh.

As Leonard Cohen sings in Anthem "There is a crack in everything that's how the light gets in".




Saturday, 17 November 2012

the tipping point

[I started writing this blog post a few days ago and then ironically experienced my own 'tipping point', something that happened to change my perspective and set me on a different course of action]

A tipping point is described variously as the threshold or moment of critical mass or the crisis stage in a process.  In physics it is "the point at which an object is displaced from a state of stable equilibrium into a new, different state".  Malcolm Gladwell in his book 'The Tipping Point: How Little Things Can Make a Big Difference' (2000) talks about a social epidemic being dependent on the involvement of a few people with a "particular and rare set of social gifts", the 80/20 principle.

And these people he describes as connectors, information specialists and persuaders.  With networks, knowledge and powerful negotiation skills.  Gladwell mentions wanting to show people how to start "positive epidemics of their own", making sense of the world and it being a "very fun ride".  In the crazy world of psychiatric services where consumers are in danger of being consumed, it might be the only way of bringing about transformative system change and a new way of being.

By understanding the tipping point Gladwell suggests that we have a way of "decoding" the world around us, and coming to terms with sudden change.  Which despite our best efforts is irresistible.  As in the movements of social change that have swept society along, started by the few with a commitment to change.  An exciting phenomena especially in terms of psychiatric system change.  For those of us who are working to transform a system that is oppressive, and where the threat of force is ever present.

I take hope from the reminder that "Things can happen all at once, and little changes can make a huge difference.".  Here's to little changes and huge differences.  

A toast

Here's tae us
Wha's like us
Damn few,
And they're a' deid
Mair's the pity!

May those who live truly be always believed,
And those who deceive us be always deceived.
Here's to the men of all classes,
Who through lasses and glasses
Will make themselves asses!

I drink to the health of another,
And the other I drink to is he
In the hope that he drinks to another,
And the other he drinks to is me.

Then let us toast John Barleycorn,
Each man a glass in hand
And may his great prosperity
Ne'er fail in old Scotland!


[proviso: this isn't an exhortation to drink alcohol as I don't drink it myself but rather an encouragement to keep on keeping on]


resisting

Resisting the force
Non-conformist and resilient
Resisting the pressure
From systems and states
Resisting the temptation
To be liked or followed

Powering on
Focused and free
Enjoying the moment
The end is in sight

Thursday, 15 November 2012

brain surgery for mental illness - psychiatric system failure



The Dundee Advanced Interventions Service (AIS) in Ninewells, Hospital, Scotland, is a "specialist service providing assessment and treatment for severe and chronic treatment-refractory depression (TRD) and obsessive-compulsive disorder (OCD)".  Treatment includes neurosurgery for mental disorder, NMD, or brain surgery.  A small hole is made in the skull using a special drill, a fine probe inserted, an electrical current generates heat which destroys a very small area of brain tissue.

The mental health charity Mind has information on 'Making sense of neurosurgery for mental disorder' and makes this point "However, in cases where a patient has not previously responded to medication or electroconvulsive therapy (ECT), it is possible that all physical treatments, including surgery, are inappropriate." and also "NMD is not a cure, and people who have the surgery are likely to need continued psychiatric support afterwards, even if the surgery is considered to be successful.  The procedure cannot be reversed.". 

Mind states that in 2009/10 only one person in England underwent NMD, authorised by the Care Quality Commission, with no other applications received.  In Scotland the AIS annual report for 2012 (p6/7) states that, for the year ending May 2012, there were 45 referrals (18 men, 27 women), 26 assessments (12 men, 14 women) and 3 Anterior Cingulotomy operations carried out, one of these patients from England.  The previous year 6 patients had received brain surgery.   No details on whether men or women.  In 2011 the population of England was around 53 million compared to Scotland's five millionTen times more people in England and yet less numbers getting NMD.

In the summary and conclusions (p8) of the AIS report is the phrase "we believe that there remain considerable numbers of patients with unmet needs and we are keen to ensure that they have the opportunity to be referred to the service.".  And here is where for me the alarm bells are ringing very loudly.  As if brain surgery for mental illness is a treatment of choice and to be promoted.  Rather than a demonstration of psychiatric system failure.

Note the larger percentage of women being referred for brain surgery, similar to the twice as many women as men receiving shock treatment (ECT).  And, according to the report, Fife where I live referred the most numbers of patients, percentage wise of population compared to other Scottish areas.  Psychiatric drugs didn't suit me, made me more depressed, caused me to have suicidal thoughts.  Would I have been a candidate for brain surgery if I hadn't managed to take charge of my own mental health and recover?  

Living in Fife, being a woman, there is no doubt the odds would have been stacked against me, if it hadn't been for my resilience and non-conformist attitude.  [Or "selfish and unreasonable" as I was described in an Email the other day by a senior Scottish Government person, in response to my challenging the conflicts of interest that arise when governments fund voluntary sector organisations.  For how many arms does a body need to have?]

Here are some suggestions.  Let's concentrate on developing alternative psychological treatments for mental distress and less of a reliance on psychiatric drugs.  Let's aim for treating the whole person and listening to their story, rather than seeing them as split into body, mind and brain.  Let's provide more opportunities for people to develop resilience and personal strength so they can know their own minds and be in charge of their own destinies.


Monday, 12 November 2012

left behind and still waiting

MWC Report
[a short post reflecting on the left behind long-stay psychiatric patients in Fife]

Yesterday I dropped by Stratheden Hospital to check on the environmental improvements.  As usual I went into the shop for refreshments and got chatting to the long-stay patients or the Left Behind as described by the Mental Welfare Commission for Scotland.

A woman about my age, 60, came up and spoke to me, she's been a psychiatric inpatient for 10 years or moreI'd first got into conversation with this woman about 18 months ago, when she expressed a desire to move back to her home town, about 25mls away.  She's an articulate woman, good at knitting and sociable.  I remember her saying back then that the nurses didn't think she'd manage 'in the community'.  Although she travels regularly out of the hospital by bus and train to visit her sister who still lives in their home town. 

I asked her how the plans for moving were going.  But there didn't seem to be anything happening and she said that there were no sheltered housing facilities in her home town that had warden support.  I knew this couldn't be right because in a previous job with a college I'd visited a sheltered complex in this town.  I asked if she had an advocate, she did and named him.  So today I phoned and spoke to the advocate, have also Emailed the council managers about this.

There is a discharge programme for long-stay patients at Stratheden which has been ongoing for at least a couple of years, with around one and a half million pounds set aside for the task, transferred I believe from NHS Fife to Fife Council, with 45 patients originally having been identified as ready for discharge. 

I'm wondering why I'm hearing stories from patients that the paid workers aren't?  As in where a person wants to live.  And how difficult can it be to arrange this transition?  Are the stories of the left behind being heard and listened to?  And where is the peer support in all of this?  The social work service tell me that peer support is valuable but I'm seeing little evidence of peer support of people with lived experience being put into practice.


Saturday, 10 November 2012

is it ever OK for a psychiatric nurse to assault a patient?

In September 2011 the Mental Welfare Commission for Scotland held a consultation event on Zero Tolerance, to develop guidance on responding to violence in mental health or learning disability care.  I was asked to give a presentation from the user/carer viewpoint, having had the experience of being both a psychiatric inpatient and a carer of family members who have been in psychiatric hospitals, over a 40yr span. 

In preparation for my talk I reflected on my own experience of being an inpatient, of Hartwoodhill Hospital, Lanarkshire, in 1978 and 1984, following postpartum psychoses and separated both times from my baby.  The last episode following a menopausal psychosis in 2002 in Lomond Ward, Stratheden Hospital, Fife.  From all these experiences I couldn't remember any violence from patients but I could remember force used against me by nurses.  Similarly with my carer experiences.  Maybe I was just lucky.

Although I was instructed to only speak about aggression and violence by patients I really couldn't fabricate a story so had to speak about the use of force on patients, and particularly on me.  I described it as grabbing and jagging, for that's what it felt like in 1978/84.  In 2002, in Lomond Ward, it was different.  In that I entered the ward as a voluntary patient, had a look round the female dorm, decided to leave then was immediately put under a 72hr detention and told that I had to take the psychiatric drugs.  

Because of my previous experiences of psychiatric hospitalisations, and of what had happened to family members, I knew that if I refused the anti-psychotics then I would be forced to take them, or grabbed and jagged.  Therefore I swallowed the drugs reluctantly.  The threat of force was enough to compel me to do something against my will.  And this has always been my experience of psychiatric care, the threat of force whether veiled or otherwise.  Going back to the 50's and 60's when my mother was forcibly treated with many courses of ECT or shock treatment when in a locked ward.

Four months after giving my talk and take on violence and force in psychiatric settings, I found myself again in the carer role, visiting Lomond Ward, Stratheden Hospital, in February this year.  And immediately came face to face with the issue of restraint, seclusion and forced treatment.  Accusations of assault by a nurse on a patient, injury to a patient self inflicted, dehumanising treatment in a locked ward and disrespect of a carer.  And for me two months of vigilant care, a raising of complaints and a resistance to the might of psychiatry.

Over 9 months have passed since the traumatic treatment and I have to again ask the question "is it ever OK for a psychiatric nurse to assault a patient?".  I say NO.  But who's going to take the word of a patient against a psychiatric nurse or group of psychiatric nurses?  And if the psychiatric system continues to support forced treatment, and justifies it in the notes, then how will psychiatric patients ever be listened to or believed?


who stands to benefit most from mixed gender psychiatric wards?

As a woman I've been a psychiatric inpatient on 3 occasions, most recently in 2002 in Lomond Ward, Stratheden Hospital, Cupar.  Where I had to sleep in a female dormitory that was overlooked by male patients in single rooms.  Having been put under a 72hr 'section' that meant I had to take the psychiatric drugs whether I wanted to or not.  And this was 'explained' to me by a psychiatric male nurse as I remember.

Being incapacitated by an anti-psychotic, being locked in and being in such close proximity to mentally ill male patients who I didn't know was very scary.  And having to depend on psychiatric nurses to keep me safe from harm, the very people who were forcibly treating me, and who I had prior experience of, in terms of having been forcibly treated in the past by psychiatric nurses.  Although the hospital back in 1978/84 had separate sleeping areas for female and male patients.

I have often considered the question of mixed gender psychiatric wards and their benefits, and have come to the conclusion that they are of the most benefit to psychiatric nurses.  In that having female patients mixed in with the men makes it easier to deal with the men.  And so makes the nurses' jobs easier.  It's been my contention for some years now that where I live the psychiatric inpatient care is staff centred and very little to do with the needs of patients or carers.

More recently the staff in the Lomond acute psychiatric ward near me got a much bigger staff room, where they sit in, overlooking the ward car park and from where they cannot see the ward rooms or patients if the door is shut.  Which often happened recently when I visited.  In fact I often had to knock on the door to speak to a nurse and on one occasion I even got the door slammed in my face, by a male nurse.  To which I made a complaint, along with many others.

So the nurses are the main beneficiaries of mixed gender psychiatric wards, followed by the male patients who I think will like to have female patients around, at mealtimes and in the lounge areas.  It follows then that the female patients are the ones who are least benefited by mixed wards.  Although some women might be OK about it, I definitely wasn't.  Especially since there are all sorts of reasons for patients being in acute wards eg substance misuse issues along with offending behaviour.  

In March when I was a daily visitor of the mixed gender acute psychiatric Lomond Ward, there was one male patient who spoke to me regularly and said he was waiting to go to court on an assault charge.  He was a large man with a scar on his face who tended to have the run of the ward.  By this I mean that he would get to use the phone in the staff room, was very familiar with female patients, often walking right down the ward corridor to the female dormitory.  And on one occasion when I was waiting around I saw him go down there and heard a female patient call out, no nurses to be seen.

When a nurse appeared I told her about the incident.  Not sure if anything was done about it.  I raised many complaints in the months of February and March this year, and haven't had satisfactory responses to all of them.  They still seem to be under investigation.  I think that psychiatric system complaints are not seen as important as other medical complaints.  As if the mental illness label means that psychiatric services are not accountable, can do as they like and justify it on the basis of mental illness, or difficult and demanding carers or family members

I want to see female patients in my local acute psychiatric ward at the very least having separate sleeping accommodation, even better if they could all have single rooms with ensuite facilities.  The women need to be kept safe and treated with respect.  This can only benefit everyone but most especially the women who may be mothers or grandmothers, sisters and daughters.  To this end I came up with a redesign of the Lomond Ward floor plan layout and sent it to staff.  This was weeks ago and I've had no response from management.

As a mother and grandmother I will continue to fight for improved psychiatric inpatient services so that the patients, carers and family members benefit.  Things really do need to improve for the next generation so that psychiatric services are truly person centred, involve shared decision-making and where mutual partnerships are created and sustained, as stated in the new Mental Health Strategy for Scotland.


Friday, 9 November 2012

being used as a stepping stone

Yesterday I ended a relationship with a national mental health organisation, mainly because I had the feeling of being used as a stepping stone, by them, to further their own ends.  Added to which I had great difficulty in contacting any of the senior managers who seemed to want me to 'speak to the hand' or go through their secretaries.  Hierarchical nonsense which I have never conformed to as a community worker.

I met with one of them last week, after having to practically force their hand.  And I did this because of being gradually left out of local developments when taken up with my caring duties.  After doing a lot of groundwork over two years, of linking them up with local mental health groups, it seemed as if I was now surplus to requirements.  This manager told me that I'd helped them a lot in their work, as if I should be grateful.  My response was something like "but what am I getting out of it?". 

I'm not sure if this organisation's leadership think that people on the ground, working voluntarily, are of less value than the celebrities and politicians that they are in the habit of consorting with.  Their website front page is full of famous people, appeals for money and their logo permeating the prose.  I'm not impressed with any of it.  And this was before I got the feeling that I was a means to an end.  

Then there is the human rights campaigning that they profess to be involved in.  Talking about it, writing about it, going to meetings about it.  Meanwhile in the localities people on the ground are having to deal with seclusion, restraint and forced treatment in psychiatric care.  And I was one of these people back in February this year, dealing with the realities of human rights issues as a carer.  While I was up to my neck in challenging issues this organisation was moving ahead in my locality with their agenda.  With little time to read my Emails or stand with me in my battles.  

I suppose they have services to run and important meetings to attend, with famous and powerful people, and this is why they require one or even two secretaries to man (or woman) the phones.  You can tell that I'm not impressed.  For I believe that the important people are the ordinary folk, on the street and in the localities.  The services wouldn't exist without us and there's no excuse for us being used as stepping stones.


Thursday, 8 November 2012

as Hamlet said 'something is rotten in the state of Denmark'

I got wind yesterday of something concerning to do with an issue I'd raised some time ago, and thought it had been dealt with.  As a mental health activist and campaigner, working to bring about improvements to services and, with others, a transformation of the psychiatric system, I do get fed up with the shenanigans of people in power.  Who should be there to serve others rather than serving their own ends.

Now there might be a good reason as to why something happened like it did but I'm not impressed, yet again, with the attempts made to cover up or justify what looks like more of the same.  A conflict of interests and a person not wanting to let go of their position of power.  Someone who has been used to doing what they want, making decisions on behalf of others and not being answerable.

I'm a member of this organisation and being a member gives me rights.  I have the right to know what is going on with the leadership and management, why certain things are happening, and to be treated with respect.  I'm not prepared to put up with bullying or with not being given a proper explanation.  There's a meeting coming up so it will be an opportunity to raise this issue and also to discuss the meaning of being a membership organisation.  

I think it's to do with the paternalism of the psychiatric system filtering into the voluntary sector mental health workings, where our fellow compatriots are having to work with the system and are in danger of becoming like the system.  And don't even realise they are doing it.  Making decisions on our behalf and thinking they know best.  It's very irritating and they really do need to wake up and smell the coffee.  I've said it before but it obviously needs saying again.


Sunday, 4 November 2012

avoiding ECT when hospitalised in 1978 after first postpartum psychosis

Remembering my first psychiatric hospitalisation, 13 weeks after the birth of my second son.  A painful experience, induced with chemicals to bring about the birth when the day staff were on duty.  Little pain relief, it was a cottage hospital, and like 'bite on a bullet' time.  I was living with in-laws and this brought its own pressures.  And ended up going voluntarily into Hartwoodhill Hospital, Lanarkshire, with my first puerperal (postpartum) psychosis.  It was September 1978, I was 25 with a birthday at the end of the month. 

The psychiatric acute ward environment wasn't what I'd expected and the regime required taking psychiatric drugs which I didn't want to do.  But I had no choice and these were forcibly given until taken orally with no resistance.  I'd been breastfeeding and had to be bound, to stop the milk coming.  This was very painful, more so mentally than physically, for I enjoyed feeding my son and didn't want to stop doing it.  But I had no choice for my baby was back home and I was hospitalised.  Also the drugs meant I couldn't have fed him myself anyway.

A song playing in the ward at that time was 'You abandoned me Love don't live here anymore" by Rose Royce.  It described perfectly how I felt, abandoned by God, separated from my babies, my sons 13wks and 2yrs old, the love of my life, being a mother.  


 

The first thing that happened on being admitted was that my clothes were locked away and pyjamas had to be worn, I think so as to deter escape, for the ward was an open one with doors only locked at night.  However patients did run away and we used to see them heading off in their night clothes down the drive, when sitting in the cafe at visiting time.  I thought the pyjama rule was very silly and was more about keeping us all under control.  I had known this anyway about the psychiatric system since a 17yr old.

Once I conformed to the drug taking there was an added pressure brought to bear on me, to consent to receiving ECT, electroconvulsive or shock treatment.  Nurses called me into their office and spoke about the benefits of ECT.  I'd seen patients queuing up to get the treatment so knew that it was the 'done' thing.  I also knew that I didn't want it, because my mother had got many courses of shock treatment in the 50's and 60's, against her will, and I thought it barbaric.  So for me being forewarned was being forearmed.

The nurses tried to get me to sign the ECT form, I remember this clearly, through the fog of chlorpromazine, but I wouldn't do it.  And that evening, when my husband came in at visiting time, we made our escape, me in my pyjamas, out to the car and back home.  But the sudden withdrawal of psychiatric drugs caused problems physically and severe muscle spasms, my neck going back, and I had to return to the ward.  Very scary as I thought the ECT would be forced on to me like the drugs had been.  I was at their mercy.

By this time however I wasn't psychotic any more, and I was a voluntary patient, so the ECT couldn't be justifiably forced on me.  But the nurses did keep saying to me that if I'd taken the shock treatment I would have recovered quicker like the other patients.  I didn't believe them and thought this was bullying behaviour.  And anyway I didn't want to have my memories zapped, preferring to remember everything.  Any psychosis I've had has been a positive experience, it's the treatment that's been the negative and traumatic thing.

I was only a few weeks in Hartwoodhill when I was eventually allowed to leave.  This was achieved by playing the game of appearing to accept what the psychiatrist saidWaiting hours to meet with him, and it was always male doctors back then.  Trying not to show the inevitable restlessness of being on the anti-psychotic for it might have been held against me as a sign of mental illness.  We knew the rules of the game, the patients and peers, and that we had to look as if we were compliant even if inside we were fiercely rebelling. We weren't going to let the b****** grind us down.

Getting home was a relief, to see my boys again, and so began the challenge of trying to withstand the depressive effects of the chlorpromazine.  It was a long winter and I remember the water freezing up in the pipes on the farm.  Brief moments of joy, like sledging in the snow, as gradually I recovered from the psychiatric treatment.  Within the year I'd tapered the drugs and came off them, recovering completely.  And the whole experience had made me a stronger and more confident person, like a transformation.

We had a small flock of sheep, I did the lambing, sold them at Lanark Market, transported them there in my mini vanIn 1980 I got on to the Krypton Factor, described as a 'shepherdess', from 10,000 applying, interviews at STV Glasgow, to the final 32 on screen.  It was an enjoyable experience although the assault course and death slide confirmed my fear of heights.  At the same time I started to do community development work, focusing on children's activities, and this was mostly voluntary.  Eg mother & toddler groups, playgroups, play courses, activities that tied in with my own sons' requirements.  As they got older, moving on to playschemes and after-school clubs, driving the community minibus, school involvement and church work.

I see psychotic episodes as opportunities to become more fully human and to expand potential.  The psychiatric treatment for me was always the challenging element of the experience.  Trying to retain some control and resisting what I could when in a psychiatric setting that was oppressive.  Governed by people who didn't know me when well and were more about treating the symptoms and behaviour rather than the person inside.  It was a battle for me to retain a sense of self while others tried to take it away.  I am glad to have survived the battle.
 

Saturday, 3 November 2012

memories of peer support in the psychiatric system circa 1984

Looking back to my psychiatric hospitalisations in 1978, 1984 and 2002 it was peer support that got me through the traumatic experience of forced treatment and disempowerment.  And continued on after discharge, helping me on the recovery journey and back to real life.  The experiences of fellow travellers, mostly women, who knew what it felt like to be incarcerated and to be limited by the psychiatric drugs or mental illness label.

I remember in particular the 1984 episode, only one day out of the maternity hospital, after the birth of my third son, and being in another place mentally.  It wasn't a negative experience for me, on the contrary, but for others it was alarming as I wasn't myself.  The fact that I'd had a previous puerperal psychosis would have alerted the doctors and no doubt they were looking out for it.  So, in very quick time, I found myself a voluntary mental patient in Hartwoodhill Hospital, Lanarkshire. Separated from my baby who I'd been breastfeeding. 

I was in an acute psychiatric ward, female sleeping accommodation and mixed gender dining/living spaces.  My clothes locked away in a cupboard and having to wear pyjamas, a few layers of them, for it was late November, winter time, 'Do they know it's Christmas?' by Band Aid on the radio.  Strangers wanting to give me drugs, which I refused then being grabbed and jagged with them. Then when they thought me compliant gave me liquid largactyl, found out later it was chlorpromazine, and finally pills when I could be trusted.



In the ward was a larger than life female patient, a Christian like me, who carried her bible around with her, and who became my peer supporter.  She'd been an inpatient in various psychiatric wards, sometimes for years, as a result of childhood trauma, and I heard her story later on in our friendship.  I attached myself to Mary (not her real name) and went around and about with her, at mealtimes and in the female areaHer strength and experience gave me confidence and protection.  

Because Christmas was coming I managed to get discharged after only a 3wk stay, glad to get out of the mental hospital.  Back to my baby and my two older sons, drugged up with chlorpromazine and like a zombie, as I used to call it.  Facing the challenge of recovering from the psychiatric treatment and getting off the drugs.  Which I managed to do within the year, with the support of family and friends.  At the same time I kept up with Mary who was also out of hospital and back home.

Mary lived on her own in a small flat and I became her friend out in the real world, an opportunity for me to return the peer support, by helping in different ways.  It was still a mutual thing, of giving and receiving, for this is the beauty of peer support.  As experiences are shared, of mental health struggles and withstanding them, even recovering from them, then it is a win-win situation for both people in the peer support relationship.  I've seen nothing else like it in the real world.


Thursday, 1 November 2012

reinforcing stigma

I have a problem with anti-stigma campaigns that are too nice or only scrape the surface of what it means to be stigmatised and discriminated against because of a mental illness label or psychiatric diagnosis.  I think there is a danger of reinforcing stigma. And have seen this happen in local projects that are tasked with challenging stigma.  

Using labels and diagnoses in the guise of information they think they are doing us a favour. Highlighting the differences between them and us. The rest of society and us service users.  Normal and mad.  The truth is that the dividing line

Some of us don't accept the labels thrust upon us in the midst of mental distress.  When for the sake of peace we have gone along with the biomedical model.  Waiting for a chance to escape from the psychiatric ties that bind us.  And the sticky labels that are impossible to remove. 

the power of personal storytelling and not being a performing monkey

I want to write something about personal stories or narratives, their power, the telling of them and ownership. Particularly in the context of mental health matters where narratives can be a bone of contention, as I see it.  By this I'm meaning the stories told about us by others (notes) when in psychiatric settings or mental health services.  And the stories we share with others that somehow get taken over and become part of someone else's agenda, and we have lost control of them.

I remember sharing my recovery story on the SRN website back in 2005, updated in 2008, and came to realise quickly that once up on the world wide web I couldn't get it back again.  My life was in full view, the psychiatric history, the ups and downs, struggles and triumphs.  I had given it away and it was lost, to me.  I did the update to have more control but still felt my story slipping away.

At the same time I was involved locally in telling my story at events.  But from the offset this was problematic when I realised the local mental health organisation was only using my story and not involving me in the whole show.  I describe it as bringing out the 'performing monkey', and as a lifelong community development worker I was not prepared to be disempowered in this way.

And so to writing my own blogs and telling my own stories, being responsible for the outcome, the risk of being controversial or unpopular.  Which is fine as long as I'm not giving up the power, as I've never liked being a conscript or unwilling participant, under compulsion or threat of force.  And is the reason why the psychiatric system and I don't get on, and why I think that recovery is still an alien concept.