£4.4 million for new IPCU unit at Stratheden Hospital

In Fife Herald, 21 February 2014:

strathedenFifeHerald21feb14

My Email sent to NHS Fife senior staff in response to this news:

“My son and I have just read the news in our local paper, the Fife Herald, about the £4.4 million for new IPCU unit at Stratheden Hospital, which I’ve put in a blog post:

I note the statement by Mary Porter that says “The provision of hospital environments which offer privacy and maintain dignity is an essential element of good patient care.” and “this new unit will allow us to deliver the highest quality care to these patients in a therapeutic environment, appropriate to their needs.”.  And John Wilson’s quote “The replacement of the present unit with purpose-built accommodation has been one of our top priorities”.

 Two years ago, in February 2012, my son experienced dehumanising and damaging psychiatric inpatient treatment in the Stratheden IPCU.  In the time since we have been picking up the pieces after his traumatic treatment while speaking out about the injustices.  It’s not been easy.  For either of us.

 I do hope that this proposed new unit will provide a therapeutic environment.  However, to improve the inpatient experience, ensuring dignity and proper care, will also depend on therapeutic practices by staff.  This should include robust monitoring and evaluation processes, to gather feedback from all patients and carers, as to their experiences of the patient pathway, from admission to discharge.  In my judgement.

 I believe that it is only when you listen to the customers of the service that you will know if the care is of the highest quality.  I have learned, from what happened in Feb/Mar 2012 in Stratheden Hospital, to question if a service is truly person/patient-centred.  To test this by asking the patients and carers what their experiences were, to hear their stories.  That’s what’s important and what will make a real difference and bring about real improvements.  In my experience.

 I look forward to hearing positive feedback from Stratheden patients and carers that will confirm services have improved, that the environment is therapeutic, in all areas (RMO, nursing, OT, psychology, physiotherapy etc) from admission through to discharge.”

The origins of mental health services

An informative blog post from Joanna Moncrieff on the state of madness now and then.

Joanna Moncrieff

The Essez County Asylum (Warley hospital) The Essex County Asylum (Warley hospital)

In order to explore the current political context of mental health services, as I will be doing in some upcoming blogs, it is necessary to establish what the modern mental health system actually consists of and what function it serves. It is only by tracing the historical development of mental health services, and analysing how and why the system arose, that we are able to fully comprehend its actual purpose.

In England up until the 19th century, managing the problems posed by those who lost their minds was primarily the responsibility of the family, backed up by the social welfare system known as the Poor Laws.

Caring for the mentally disturbed was not so different from caring for the physically sick. Both groups needed feeding, clothing and housing. If the family was reasonably wealthy, the needs of one individual could be borne by the…

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meaningless involvement

I woke up this morning thinking about Scotland’s mental health world and my experiences over the last 7 years or more of trying to have an influence on psychiatric settings and community MH services.  The phrase “meaningless involvement” again came to mind as it has been doing more and more these days.

The feeling that it’s all just a sham, a tick-box, tokenistic exercise and pretense that people with “lived experience” have a place at the table, are respected as experts in their own field or have something valuable to say. 

I was used to being a community development worker and empowering people in different communities or settings, to be informed and to have a voice.  I didn’t expect the mental health world to be any different.  But it is.  I’ve been forced to admit it.  I have no choice but to tell the truth.  Let the cat out of the bag.  Pull back the curtain.  Expose it.

When the government documents spoke of inclusion, peer support, recovery, person-centred services, shared decision making, respect for carers, I believed it.  And got involved in local and national groups to have a voice and influence.  It only took a few months into 2008 when I realised that not everything in the garden was rosy.

[I liked this Lynn Anderson song when 18, danced to it, but it wasn’t real life]

The weeds and thorns are everywhere, choking the real life out of vividness, creativeness, individuality, spirituality, uniqueness, collectivism and humanity.  We might be mad but we’re not stupid.  Stop controlling us as if we were puppets.  The strings have been cut and we’re doing it for ourselves.  Leave off.  Do us a favour. 

[I liked this Sandie Shaw song when 15, still do, but it wasn’t real life]

Mental illness is a psychiatric construct.  Psychiatry is a patriarchal system.  Some of us don’t accept the mental illness labels or that daddy knows best.  When you can accept this then we’ll have “meaningful involvement”.

Are you listening?  Have you got it yet?

Great arty news, awards and so on

great blog post and Dogboy film from Sarah K Reece and friends!

Sarah K Reece

I finally got back the marks for my Digital Media class last year – I think is the best result I’ve had for anything in my Visual Arts degree so far –

HD digi media

This is for the stop motion animation project I did in a small group. See more details about the project here. Apparently the animation is now being used as an example for future classes. Wow, nice!

Considering that my first involvement with the medium of film: Regeneration won an award in Canada recently, I’m wondering if this means I should give film/animation/digital media more serious consideration in my degree or arts practice?

It’s also making me think that I work well in teams, and to deadlines, despite what I’ve always believed. Maybe I need to seek out some collaborative art opportunities? 🙂

In other exciting news, I collected the keys to my new studio today! It’s…

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I wonder what the Scottish ECT Accreditation Network (SEAN) is up to?

It’s been a while since I perused the Scottish ECT Accreditation Network (SEAN) website so I’ve just had a quick look through to see what’s going down, in terms of involuntary shock treatment, the user reference group and what the statistics might be saying.

ect_treat

photo from University of Michigan website

Although the latter doesn’t really tell us anything about what the people who get ECT feel like.  There has been no service user controlled/led ECT research undertaken in Scotland.  And the SEAN figures are based on assessments done by the treating doctors.  It is not any sort of independent, controlled assessment of the usefulness of this treatment.

The SEAN 2013 annual report summary says that in 2012 there were 360 patients getting ECT, most of them with a depression diagnosis, 61% of these found anti-depressants to be of no use (like me) and 32% got it without consenting to it.  Which means involuntary or against their will.

Of the people who agreed to have it (and some may have been persuaded, as in if you don’t take treatment then you’ll have to stay longer in hospital, as I heard an older female patient about my age say in an acute ward last year) 43% didn’t show a definite improvement.  Which is nearly half of the folk getting it.  Nearly a third got headaches.  Five had critical incidents

I’m not seeing anything in the summary about ratios of women to men getting ECT so will check out the full report.   Ah yes, now I see it, 65% women to 35% men getting it.  As usual it says that this equates to the ratios of women to men being treated for depressive illness.  (you can see why men don’t want to see their GP if they are in a low mood).  And the mean age is 58 for both sexes. 

Checking out the SEAN reference group page on the website, service user and carer section, and it is blank.  Obviously nothing to report there then. 

More anon ….

Mary Beard: vocal women treated as ‘freakish androgynes’ in Guardian

Here’s an article that I can identify with, as a female psychiatric survivor activist and recent convert to feminism in my 60’s.  After reading Bonnie Burstow, feminist author and academic, and her comment that “ECT is a gentleman’s way of battering a woman” and that everyone is treated like a woman in psychiatric settings.

 ‘Mary Beard (@wmarybeard): vocal women treated as ‘freakish androgynes’: Academic who has faced online abuse says prejudice against women is hardwired over two

millennia, from Homer to Twitter’ – Guardian, 14 February 2014:

The first recorded instance of a man telling a woman to “shut up” was at the start of Homer’s Odyssey, when Telemachus, son of Penelope and Odysseus, tells his mother speech is a man’s business. The same language is used today in trolling, she argued. “What’s the connection between publicly speaking out in support of a female logo on a banknote, Twitter threats of rape and decapitation, and Telemachus’s putdown of Penelope?

Mary Beard OBE is professor of classics at the University of Cambridge

Mary Beard (from Guardian article)

 “It doesn’t much matter what line you take as a woman – if you venture into traditional male territory the abuse comes anyway. It is not what you say it that prompts it – it is the fact that you are saying it.

You can perfectly well say: ‘Look at you, Beard. You have got fantastic opportunities to get your voice heard.’ Yet the fact remains women who put their head above the parapet have a much harder time than men. We have got to think about that in a calm, historical analytical way.

 “We just have got to have a bit more onsciousness-raising, old-fashioned feminist consciousness-raising. How do we use language? Why does it matter? And how does it put women down?

 Great stuff!

“World looks to Scotland after mental health care improved” – are you serious?

Friday 7 February 2014 article in the Herald: World looks to Scotland after mental health care improved

It features retiring Chief Executive of Scotland’s Mental Welfare Commission Dr Donny Lyons who says in the piece:

Dr Lyons believes that as a consequence of these changes being implemented Scotland now leads the world in many respects in terms of its mental health system. “I think mental health care has come on a long way in Scotland over the past decade,” he said. “There has been a shift in the culture of doing things to people with mental health issues to doing things with people.

 and

Over the past 14 years a raft of new laws – including the Adults With Incapacity (Scotland) Act 2000, the Mental Health Act (Care and Treatment) (Scotland) 2003 and the Adult Support and Protection (Scotland) Act 2007 – ushered in vast changes, giving more rights to patients, setting out more protections from ill-treatment and giving them more of a voice. Part of Dr Lyons’s job has involved monitoring this new legislation in practice.

On reading this I made an immediate response in a comment which was published:

As a mother, carer and survivor of mental illness and psychiatric treatment, living in Fife, I have to disagree with Dr Lyons regarding the efficacy of Scotland’s Mental Health Act for people with a “mental disorder” and their carers. It has been my experience over the last 5 years and more that the Act isn’t implemented appropriately and the safeguards within the Act aren’t safe. The principle of “Respect for Carers” hasn’t been practised where I live and the rights of the family member I care for were not protected under the Act.

Because of the human rights issues I have experienced and the lack of respect I now find myself a writer, activist and campaigner in mental health matters, and participate in many national mental health groups from the carer and survivor perspective. I speak out from personal experience and from the stories told to me my others, of the difficulties faced in psychiatric settings when someone is deemed to be “without capacity” and drug treatment is forced upon them, under the Act. 

 Unfortunately the mental health law in Scotland has been used by professionals to justify coercive treatment and leaving carers out of the loop. Confidentiality is used to keep information from family members and the named person role in the Act, if it is the carer, can be disregarded or not given its full place. I want to see safer psychiatric settings for detained patients under the Mental Health Act where the patient and their carer is listened to and respected, even when disagreeing with treatment. Having a “mental illness” should not mean disregarding a person’s wishes or overriding their concerns.

I only want what other hospital patients receive which is person-centred care and treatment in a safe environment with family members and carers respected and informed at every stage of the patient journey into discharge.

I’ve engaged with the psychiatric system in Scotland since 1970 and unlike Dr Lyons I haven’t seen major improvements in the care of patients.  In fact where I live in Fife things have got steadily worse since 1995 when I first had a family member an inpatient in Stratheden Hospital.

In my experience the mental health act hasn’t made it safer for my family members in psychiatric settings.  The Mental Welfare Commission and other safeguards within the Act, including Mental Health Officers, named person and the Mental Health Tribunal, have not protected the rights of my family when detained under the Act.

If it’s not working for me and mine then it isn’t working, in my opinion.  We can’t be selective in gathering evidence or proof of efficacy.  It’s not just about listening to patients and carers who have had good experiences.  And it’s not just about buildings being unfit for purpose.  

It is also about staff being unfit to practise.  Mental health acts not being implemented or monitored.  Safeguards that are not safe.  Until such time that it does what is says on the tin then I contend there is nothing to be proud of.

Thoughts of Equality, Freedom and Justice on the Road to Activism

[on Mad in America 5 February 2014]

I’m a relative newcomer in the field of mental health survivor activism and human rights campaigning, although an old hand at resisting psychiatry and recovering sanity.  I suppose the lifelong experience of psychiatric treatment made me loath to get involved in the power struggles of what I believed was an oppressive system until I was drawn in by the peer movement with its potential to shift the paradigm and bring about real change.

For me to make a full recovery from mental ill health and psychiatric interference it required a critical mindset and an independent streak.  For others it will be different because we are all individuals and make our own way in life, if allowed to.  I like to run free, in my mind as well as in my body.  I don’t like swallowing pharmaceutical drugs although I can take a mild painkiller for a headache no problem.  

But having to take psychiatric “medication” was like swallowing mind-altering drugs and being brainwashed, losing my personality and what made me “me”.  If I’m feeling pain there is a reason for it.  Don’t force a painkiller on me until I ask for it.  Why should this request be unreasonable?  Putting a psychiatric label on me shouldn’t give anyone the right to coerce me into ingesting drugs that make me worse and take away my freedom.

In 2009 I reached a crossroads in my new life as a promoter of the peer support model and self management in mental health.  It came after a trip to the IIMHL (international initiative for mental health leadership) conference in Brisbane, Australia, with an exchange in Auckland, NZ, as a carer representative funded by Scottish Government.  [this year it’s in Manchester, England, 9-13 June]  I’d got the opportunity to take part at the last minute, after raising questions about the selection process of people with “lived experience”.  It seemed that my keenness was being rewarded.

There were various issues that arose during my trip that caused me when back home to consider giving up working in mental health and going back to what I was doing before, working as a lecturer or in community development.  By the end of 2008 I’d been getting excluded from Scottish mental health developments because of speaking out about inequalities or cronyism.  And I’d only been really involved since the January of that year.  I could see that my values, personality and life experience wasn’t going to fit well into the culture of the user movement in Scotland. 

I considered and reflected, wrestled with the thought that it wouldn’t get any easier trying to be “meaningfully” involved.  How could I thole (put up with) it?  I’m not a patient or tolerant person if faced with hypocrisy or ignorance, and don’t like being told what to do by someone with less experience or knowledge which happens more and more, the older I get.  But I couldn’t let go and had to keep going.  Why should I let myself be excluded and badmouthed?  Stubbornness won the day and I got back into the ring.

If I’d known what was ahead of me then I might have had second thoughts.  Just as well we don’t know what’s coming around the bend.  It’s been a rollercoaster of a ride the last 5 years which took me from peer support to writing, survivor activism and human rights campaigning in mental health matters.  I’ve had to  advocate for my sons in psychiatric settings, challenge forced treatment and mental health safeguards that aren’t safe.  Through it all there have been allies and antagonists, in equal measure, and I’ve developed a thick skin and a sharp tongue.  It’s inevitable in an activist role and I’ve come to accept it.

But I still have a hankering for the peer agenda and seeing the development of proper peer run crisis alternatives in the local Scottish areas.  Alternatives to clinical models of mental health and psychiatric drug “therapy” (an anachronism to my mind).  That’s why I got involved in the first place, to see changes, sea changes, paradigm shifts, people before systems, first do no harm.

It will require a taking back the power and not just empowerment, which is fine in the real world but not in the mad world of mental health where the softly, softly approach just won’t wash.  For who ever likes to give up the power they have so that others can have more power?  Let’s get real.  That’s not to say I’m advocating force or coercion.  Look what happened in animal farm.  It’s going to require a range of tactics for ensuring level playing fields and straight paths.  And ongoing adjustments to see that it remains so. 

Interestingly the more that I’ve got involved in activism the more that other activists have tried to influence my work or to have me join their cause.  It’s been like “give them an inch and they’ll take a mile”.  At times very irritating but par for the course, when people have been disempowered and believe that justice hasn’t been done.  I know what that feels like, the sense of injustice at human rights violations in psychiatric situations where complaints processes favour the professionals and the voices of the “mentally ill” are silenced.  By chemicals or notes or slanderous accusations.  And I’ve come to realise that being a writer, activist and campaigner in mental health matters is all about justice.

There will be justice … when those who are not injured are as outraged as those who are.” Thucydides

Patriarchy, Infantilisation and the Blaming of Mothers

I’ve become very familiar with the characteristics and personality of the patriarchal system that is psychiatry.  “It’s a man’s world”  Where women are kept under control and men are treated like women.  Psychiatric drugs are the tools of choice and voluntary means detained if you refuse to go by the rules.  When mothers challenge the system and stand with their children, grown up or otherwise, there is a “divide and conquer” mentality, and psychiatric notes speak of difficult and demanding mothers, troublesome creatures who just won’t let the men get on with the job.  Of power, control and infantilisation.Image

The punishment for psychosis is a stigmatising label and forced drug treatment if non-compliant or resistant.  Never mind if the altered mind state was reasonable in the circumstances, a coping mechanism for dealing with trauma or body changes.  Daddy knows best.  Close your eyes, hold your nose, open your mouth and swallow the pills.  Or else.

I’d been in the habit of choosing the “or else” but in 2002 did as I was told and swallowed the pills, and was the worse for it.  I ended up having to swallow a lot of pills, anti-psychotics and anti-depressants, that weren’t “anti” anything.  In fact they made me more depressed, flat, humourless and obedient.  Good girl.  Then when I made a feeble protest at a psychiatrist appointment I was given lithium to “augment” the anti-depressant.  Daddy knows best.  Still no change, flat as a pancake, no singing voice, grey days.  Time for action but difficult to do when unmotivated and having got used to obeying orders.

Yet inside there was a rebel voice, a mother who would not let them get away with it.  The labelling, drugging and blaming.  Family history of.  It must be true, it’s written in the notes.  Well I’ll have to write my own notes, tell the real story, name and shame, as they have done with me and mine.  Let the battle commence.  But first I had to get out from under the mire of fatherly influence, brain altering chemicals and feelings of hopelessness.  That suck you down and make you conform.  I had to become my own woman again like at puberty.  Breaking free, on my own terms.

ImageYou see it’s easier to control the mad people if they become like children.  The difficulty is when they resist, refuse to obey and remain in their psychoses or mad states.  That’s when the schizophrenia label appears and remains in psychiatric notes to warn the world that this person is a troublemaker.  They won’t lie down and take it.  How dare they! We’ll sort them out.  With indelible labels and slanderous accusations wrapped up in medical jargon to fool the world outside the system.  Stigma will keep them chained.  Self doubt and shame will keep them silent.

But some of us won’t lie down or be quiet.  Our voices keep rising up, speaking out, whatever the cost.  Especially if they try it on with our children.  A step too far.

In 1982, four years after my first psychiatric inpatient experience, following what the psychiatrists called a “puerperal psychosis” due to hormone imbalance, I was invited to speak at a church event about how I came to faith.  Part of my story included running from the psychiatric hospital to avoid ECT, and then the escape from psychiatry by tapering and getting off the psychiatric drugs.  

At the end of my talk a woman came up to me and said she’d had many courses of ECT and was still under psychiatry.  She seemed OK about this and that somehow I was the odd one out.  Ar 30 years old I realised that my story of resistance was not “normal”.  In 1984 I had another baby, they were looking out for signs of psychosis and I ended up in the psychiatric ward only a day or two out of the maternity hospital.  Again I was forcibly injected with chlorpromazine, separated from my children, tapered the drugs within a year and got back on with my life.

In between this episode and my 2002 incarceration I had good mental health, no more babies (my husband got a vasectomy or I would have had a fourth child) and I supported other family members in and through psychiatry.  My mother, two younger sisters and my oldest son who had a breakdown in 1995 after leaving home to go to university.  My middle son experienced similar in 1999 after leaving home but I made sure to get him out of Fife and back to where he was living, in a different health board area.  I didn’t want a repeat of what had happened to my oldest son, physical injuries in the psychiatric ward, complaints made by me, attempts to label him, forced ECT and a critical incident.  The same ward I entered in 2002 and where my youngest son was an inpatient in 2005, 2008, 2010 and 2012.  Ending in psychiatric abuse and bullying of mothers.Image

I moved my mother to Fife where I live, in 1993, where she continued to go for her 3 weekly depixol injections until her death in 1998, a gentle woman who led an ordered life and did the best she could for her children.  The system now had our family’s psychiatric notes from mother to daughter to grandsons.  Family history of.  I believe this is why it was more difficult in 2002 for me to both resist psychiatry and to recover.  Fortunately my mother wasn’t around by then, for her sake, although I miss her a lot.  

Since I got my life back in 2004 I have continued to advocate for family members while also getting deeper into mental health involvement, activism and campaigning.  It’s not been easy, I didn’t choose to get involved but sometimes circumstances compel you to take a stand, to speak out and to resist.  There’s nothing else for it.