Friday, 29 March 2013

in the name of psychiatry

Today is Good Friday in the Christian calendar, a religious holiday remembering the crucifixion of Christ, leading on to Easter Sunday and the resurrection.  It has caused me to think even more of the religion or church of psychiatry with its belief system and set of doctrines.  For that's how it seems to those of us who were involuntary conscripts for a while then had to make our escape without looking back (like Lot's wife, pillar of salt).

Although I have a Christian faith I'm not very good at organised religion where I'm required to do certain things according to the church, to earn my place at the table or to be accepted/acceptable.  Being a non-conformist I always have to consider if the rules and regulations make sense and if they don't then I won't be compliant.  It's a matter of conscience and logic, also truth and fairness, as I see it.  

Therefore I haven't held positions in churches, since 1981 when I first became a member.  Rather I did other stuff like children's and youth work, visiting the housebound or playing the guitar and singing.  In 1983 I did try to become a lay preacher in the Church of Scotland and completed 2yrs of training.  But the church that I belonged to didn't accept women in leadership and I was labelled as an 'apostate' by the male minister.  Then in 2008, 25yrs later, I tried again to become a lay minister but again was turned away on the say so of a male minister, claiming I lacked effective communication skills.  Maybe I was too effective?

It's ironic to think that I'm now locking horns with another male dominated institution, psychiatry, with its belief in biomedical models of mental illness, lifelong psychiatric drugging and labelling.  And it's interesting to think that I've only ever had dealings with male psychiatrists who tried to convince me that I had severe and enduring mental illness that required lifelong lithium to maintain it.  I didn't believe it, took charge of my own mental health and recovered.

Maybe I'm the exception to the rule?  But I don't believe that either.  If they got it wrong with me then they must be getting it wrong with other folk.  It makes sense.  There's a lot of talk and government documents that mentions 'experts by experience'.  Well, if we are experts in our own lives, then it's up to us to decide if psychiatry has got it right and to choose whether to follow their religion or not.   The use of compulsion or force doesn't justify their stance but strengthens our cause and resistance to conformity in the name of psychiatry.

Sunday, 24 March 2013

The Segregation of Psychotics and Schizophrenics in Relation to Recovery

[on Mad in America 24 March 2013]

Speaking as someone whose whole family has been affected by psychoses and the subsequent psychiatric treatment I am fed up with the separation and segregation that continually is and has been our lot.  The schizophrenia labels and dead-end cul-de-sac of severe and enduring mental illness (SEMI) that requires resilience and strength to overcome.  The stigma and discrimination foisted upon us by a psychiatric opinion, non-medical, subjective, yet taken as gospel and written in the notes.  Tying us to a lifetime of psychiatric drugs and social control unless we can get out from under the regime and recover.

The two-tier recovery model hijacked by governments that offers hope to the many except those of us with schizo disorders who have mental illness and for whom there is no escape from oppression and tyranny or psychiatric care and treatment.  The hearing voices movement (HVM) has countered this culture of labeling and persecution, reframing the voice hearing and giving power to the voice hearer to be in control.  But in Scotland where I live the HVM isn't co-ordinated, doesn't have power and neither do people with psychoses who individually have to fight against system control and lay hold of the right to recover.

Having psychoses means no access to psychological therapies in mental distress and in Fife, Scotland, where I live, the prognosis is poor, the SEMI label is given, the pressure is on, to conform, take the drugs and keep quiet.  It's what others do, have done, and live with the consequences.  Choose bipolar if you can, the label of choice, it's become famous through celebrity endorsement, despite the disorder tagged on at the end.  It's a growing trend to be seen with bipolar, fashionable and acceptable, for everyone has mood swings, don't you know?  That's life.

But resist the schizophrenic label at all cost, do what you can to challenge this millstone round your neck.  It will affect your family and descendants, as in "family history of ...", and come back to haunt you in the psychiatric notes, at eye clinic appointments and, whenever you have to visit the GP, it will be a reminder to him or her of your madness and lifelong mental illness.  Forever singled out at the stroke of a pen you will be watched for any signs of losing it or of being a danger to society.  Unless you can take back the power, leave the label behind and forget about it.

I've always thought of psychiatry as a belief system, a religion that requires obedience to a set of rules and regulations.  And this has helped in my continual non-compliance, unbelief and complete recovery from psychoses, hospitalisation and psychiatric drugging.  It was obvious to me in 1970, on seeing my mother in a locked psychiatric ward in distress, that psychiatry wasn't doing the job right, regarding working with women and people in mental anguish.  I met with psychiatrists then, listened to what they said, they were all men, and made up my own mind about the situation.  I've been the same ever since and it's helped me personally going through the psychiatric system and helping many family members do the same.

I remember in 1982 or so, aged 30, doing a talk at a Christian event, following my first psychosis and hospitalisation in 1978, telling my story of psychiatric system engagement, avoiding ECT and making a complete recovery.  A woman came up to me after and said how she'd had many courses of shock treatment, was on psychiatric drugs and still used services.  She seemed OK about it.  My story was alien to her and she had many questions.  Also in the Lanarkshire village where I lived there were two other women I knew who'd had postnatal mental ill health although no hospitalisation.  Years later they were still on psychiatric 'medication' and experienced depression and anxiety.  My story was different to theirs.  I was young at the time and didn't understand why.  For me it was obvious not to accept what psychiatry said and to take charge of my own mental health and recover.

Now it's 2013 and nothing much seems to be have changed in Scotland, in relation to the psychiatric treatment of psychoses, except that it's even harder to resist the cocktail of psychiatric drugs, the prognosis of lifelong mental illness and to have a chance of making a complete recovery.  I managed it in 2002/4 but it was much tougher than in earlier episodes because of the "family history of ..." that dogs my family's psychiatric/medical notes and labels us as having recurring mental illness and being in remission rather than recovery.  It's very irritating having to fight against a belief system that is non-medical, in my opinion, and is more about social control.

Scotland's new mental health strategy, to which we all had an opportunity to consider and respond to in the prior consultation, still mentions the divide between schizophrenia and 'common' mental health problems in the opening paragraph of its Key Change Area 2: Rethinking how we Respond to Common Mental Health Problems:

"Common mental health problems such as depression and anxiety can be both severe and enduring, but the response they will generally require is different from that for illnesses such as schizophrenia."

After 40 years of unbelief and resistance to the psychiatric system's determination to separate my family from recovery focused mental health services because of psychoses and schizophrenic labels I am equally determined to challenge this segregation from the survivor perspective.  It is unfair to discriminate against people who are labelled with psychoses or hear voices or have spiritual experiences or are in mental distress.  Rather we should try to make sense of the psychosis and find alternative ways of working with people in mental distress or having out of body experiences.  It's not about altering brain chemicals or shocking the brain or doing brain surgery.  Leave our brains alone.  It's a mind and body thing, holistic and spiritual.  You're looking in the wrong place.  So stop fiddling, stop segregating, start working with us all towards recovery and wellbeing.

Wednesday, 20 March 2013

two tier user involvement and the irritating friendly fire

I want to say something about the two tier structure of service user involvement in mental health that's become more apparent to me as I have got more involved in mental health matters.  The fact that there appears to be a them and us in the user movement, those who are siding with the powers that be to bring about change and those of us who are trying to take back the power that is ours and belongs to us.

I do think that we're all trying to do the same thing, in a sense, but it becomes a battle within the ranks and a foray of friendly fire that feels anything but friendly.  And the powers that be aren't too bothered because it means they're not in the firing line.  It seems that some of our comrades are climbing the slippery ladder in their efforts to be accepted and affirmed.  That's up to them.  I'm not bothered about that. 

What does irritate me is their tendency to blame the activists and campaigners for trying to bring about real change just because it may affect their position on the ladder and at the table.  I say to them, lay off the sniping and backbiting, it's not doing the cause any good, and it could backfire on you anyway.  Let us speak out and do our thing.  It's a free country and we deserve to have our say.

Saturday, 16 March 2013

Stigma Begins And Ends With Psychiatry: Time To Stop Labeling And Disabling

[uploaded to Mad in America 15 March 2013]

The problem with anti-stigma campaigns, to my mind, is that they are focusing on the wrong target, society, when the real issue is to do with psychiatric diagnoses, biomedical models of mental illness and lifelong psychiatric drug prescribing that can restrict and cause disability.  Therefore there will never be an end to stigma until there is turnaround in psychiatry so that patients become people and mental illness becomes life's problems that can happen to any of us.  Let's call a halt to the blaming of families and genetic fault-finding when it's obvious that mental distress and psychosis is a normal reaction to trauma, stress, transition and dislocation.

Of course it might be that the targeting of society is a stealth movement by governments in their attempts to control psychiatry, as in keeping both society and psychiatry occupied while they get on with the business of ruling the masses.  A balancing act that owes more to luck than good guidance.  The more I get involved in national mental health activities from the survivor perspective, the more I am aware that there are other agendas and games afoot.  There's a sense of puppetry and performance but I'm not sure if anyone's pulling the strings in the mad world of politicking and empire building.  A free for all with totalitarian undertones.

Millions of pounds going in to challenging stigma and discrimination while the grassroots activists and voluntary sector stalwarts are getting peanuts in comparison, and are expected to be happy with their lot.  Meanwhile statutory agencies and public bodies go through the motions and play the game, trying not to get too involved by keeping their distance and their sanity.  Involving service users in tokenistic endeavours, resisting survivor participation as the cost is too great, considering the stories they tell which are too near the bone.  No room for them at the table so give them a hard time and then lay the blame at their door.

For survivors like me are the folk who didn't believe the labels of lifelong mental illness and DSM charts of diagnoses, recovered and got back on with our lives.  Some of us came back in to the fray, sharing our stories of survival and recovery, only to be excluded and ostracized for daring to tell the truth, that the emperor is naked.  There's no such thing as mental illness and no need for ECT or brain surgery.  It's the psychiatric drugs that disable brain chemicals not the mental distress caused by the problems of living.  The use of force for 'non-compliance' is really psychiatric abuse, the bullying and intimidation of non-conformist people who find themselves conscripts in the cult or religion of psychiatry.  A belief system that demands obedience of its converts and is dismissive of unbelievers or those who recovered despite them.

As a child I remember playing games on the wasteground outside the flats where I lived, near the railway station in Perth, Scotland.  It was the early 60's and old buildings were still being demolished, half walls and bricks lay around, pear trees good for climbing, not so many cars on the road so we roamed here and there in gangs of girls and boys.  One of the games was 'kick the can' where the aim was to run and hide while the person who was 'it' had to count to one hundred, one by one, standing beside an old can, then try and go find someone before anyone else could kick the can.  And when one of us managed to outwit the 'it' person we kicked the can and shouted "the game's up the pole", meaning it had come to an end, was out of play, finished.  (The expression came from when ball games were played on the street and the ball got stuck in a roof gutter or in a neighbour's garden)

Well I think the game's up the pole regarding the biomedical model of mental illness and the power of psychiatric labels.  The survivors among us have kicked the can even if there are still gang members out there who think the game's still on.  Ironically it's the proliferation of psychiatric drug prescribing that has undermined the belief system with its resulting long term chronicity problems, brought to light by Bob Whitaker in Anatomy of an Epidemic.  Some of us always resisted the drugs and labels so it's satisfying to hear that we knew what we were doing in the midst of our madness.  It made sense to us even though psychiatry did it's best to make us conform and fall into line.  Rather we chose to go our own way and fall out of favour, or disappear into normal living, shaking the dust off our feet until the next encounter.

And so to stigma which is another way of keeping the mad folk in line and anti-stigma campaigns which divert the attention and blame, from psychiatry onto society.  The balancing act of social control and reinforcing stigma, observed by the psychiatric survivors who are sometimes entertained and often exasperated by the nonsense of it all.  But human rights abuses in psychiatric treatment and the use of force are no laughing matter.  Some of us will never get over this aspect of the game.  We may, or may not, forgive what was done to us or those we love, by psychiatry.  It's our choice and should be respected.

"You never really understand a person until you consider things from his point of view, until you climb into his skin and walk around in it." Atticus Finch in 'To Kill a Mockingbird'

Thursday, 14 March 2013

playing the game, straitjackets, bullying and being respected

Yesterday I attended the Fife mental health strategy consultation 'What matters to you?' in Glenrothes and during the proceedings there were topics discussed around tables facilitated by managers from NHS Fife and Fife Council social work service.  A facilitator at the first table I attended got annoyed at my input and recommended that I 'play the game'.

I laughed at the thought that my voluntary participation at this event meant that I should be playing the game.  What game was that?  Agreeing with compulsory psychiatric treatment and the use of force?  Being compliant?  Only expressing opinions that managers thought appropriate?  It was both funny and ironic.  Straitjackets at the ready.  Tokenistic tick box involvement as usual in Fife's mental health world.

I had to leave the event early to attend the Cross Party Group on Mental Health at Scottish Parliament in Edinburgh, a group I've been participating in for about a year or more.  An opportunity to hear about national mental health initiatives, good practice and different options, this time around counselling, psychotherapy and CBT available for people with mental health problems.  Mild to moderate was mentioned, as well as common and enduring.  I was listened to and treated with respect.

On trying to get away sharp from the Fife event, to catch the Edinburgh train, I was accosted by a senior NHS Fife manager who said I should be working with them to improve services (missed the train, had to drive).  She said that I couldn't have been bullied, it wasn't possible, even as she attempted herself to pick on me and put me down.  More irony since over the last year I'd raised a number of complaints about psychiatric services, many of which were not taken seriously or even believed.  The word of the psychiatric nurse against the psychiatric patient/carer.  Score one nil.  Getting away with it.

I was told by her that improvements had happened.  But what proof do I have?  They said the same thing in 2011, she and another manager, after I raised a number of concerns about psychiatric treatment in 2010 and then in February 2012 my son was forcibly treated, restrained and secluded in rooms for hours at a time with a broken hand.  I wasn't informed about his injuries and then was bullied by 5 psychiatric nurses a few days later for trying to see my son and assess his physical and mental health.  

Six months later I found out that the adult protection investigation led by social work had accused me of 'psychological harm'.  As usual trying to blame mothers for system failures.  [Collusion and Control - The Reality of Mental Illness]  Even getting the police involved in their shenanigans. I gave NHS Fife and Fife Council social workers a year to respond to my complaints, to take me seriously and to treat me with respect.  

I'm still waiting. 

Sunday, 10 March 2013

is the Mental Welfare Commission for Scotland just another psychiatric institution?

Have they replaced one straitjacket with another?  Why have the voices of lived experience been corralled within an organisation that demands we talk to the hand?  What has happened to the power of independent advocacy?  Where has the human rights movement of peer support gone?  And many other questions to do with democracy, freedom and speaking out in the land of my birth, Scotland.

As a community development worker and grassroots activist since 1980 I've always been used to speaking out and telling it like it is.  It wasn't a problem in community work where empowerment and lifelong learning were/are the cornerstones and foundations, of helping people to help themselves.  It wasn't about empire building or institutionalised behaviour but about developing projects along with local people then moving on when the roots were established.

It meant that I was never in jobs for long and got used to meeting new people, discovering the lie of the land quickly, garnering the skills and strengths, setting up systems, then letting go when the time was right.  A great career for me as I always did get bored easily if leadership was lacking or management flawed.  And nothing's changed now I'm 60 with a bus pass.

The Mental Welfare Commission for Scotland (MWC) is a powerful organisation in its watchdog role over psychiatry and my concern is that the power could go to its head.  Free speech and critical voices are necessary for keeping balance in society although not always welcome in institutions.  Therefore a sign of healthy organisational culture will be a welcoming of opposite and apposite views and thoughts.

Otherwise, to my mind, an organisation becomes an institution and is in danger of becoming a totalitarian state.  The challenge is to encourage critical voices and freedom of opinion, not easy in a mental health world that allows compulsory treatment and the resulting use of force on vulnerable people.  Because if a person speaks out are they going to be at risk of being forcibly silenced?

Here's the real root of the problem as I see it: the use of force in psychiatric treatment.  Juan E Méndez, UN Special Rapporteur on Torture and Other Cruel, Inhuman or Degrading Treatment of Punishment states in his report to the 22nd session of the Human Rights Council Agenda Item 3, 4 March 2013, Geneva: 

    "States should impose an absolute ban on all forced and non-consensual medical interventions against persons with disabilities, including the non-consensual administration of psychosurgery, electroshock and mind-altering drugs, for both long and short-term application. The obligation to end forced psychiatric interventions based on grounds of disability is of immediate application and scarce financial resources cannot justify postponement of its implementation."

I want to see the MWC working alongside people like me, listening to critical voices and different opinions, challenging the use of forced treatment in psychiatry so that it can eradicated once and for all.  Force is never justified and demonstrates psychiatric system failure.  I do hope that the people in power are listening to a mother's voice which is also a survivor testimony.

Monday, 4 March 2013

Brain Surgery For Mental Illness In Scotland: Going Under The Knife When Treatment Resistant

(on Mad in America 4 March 2013)

The Dundee Advanced Interventions Service (DAIS) at Ninewells Hospital, Dundee, Scotland, became a National Specialist Service in April 2006 and has been spearheading the advancement of neurosurgery for mental disorder or brain surgery for mental illness.  "The standard definition of Neurosurgery for Mental Disorder (NMD) is that provided by The Royal College of Psychiatrists: “…a surgical procedure for the destruction of brain tissue for the purposes of alleviating specific mental disorders carried out by a stereotactic or other method capable of making an accurate placement of the lesion” (Royal College of Psychiatrists, 2000)." from page 9 of DAIS 2012 Annual Report.

(Declaration of interest: CM has received no payment from any pharmaceutical companies and has no medical training but does have over 40 years experience of engagement with the psychiatric system, personal recovery from serious mental illness and has stood with many family members in their recovery journey)

In this short blog post I will attempt to critically evaluate DAIS from the survivor perspective, trying to make sense of an intervention that is irreversible and doesn't claim to be a cure, yet is apparently requested by increasing amounts of patients, some of whom may be detained under the Scottish Mental Health Act.  Like many other colleagues I have major concerns that this development is a retrograde step in mental health care and reinforces the biomedical model of mental illness, at the same time undermining the recovery movement.

Since 2006 there have been a total of 260 referrals, 152 women and 108 men, to DAIS and they "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.".  The DAIS leadership have diligently promoted their service throughout the UK over these years, assisted by psychiatrists in local areas, some of whom work for the Mental Welfare Commission (MWC) for Scotland, the organisation that oversees the rights of patients under the Mental Health Act.  Here is a RCPsych meeting programme from 2007 with presentations by the two lead DAIS psychiatrists David Christmas and Keith Matthews, chaired by an NHS Fife consultant.  And Fife, where I live, has the most referrals, percentage wise, of any Scottish area.

Fife also had the most 'Left Behind' patients still in long/medium stay psychiatric inpatient care, according to the 2011 MWC report, from their visits to people with 'severe and enduring mental illness'.  A label that Fife psychiatrists tried to pin on me back in 2002 (Mad in America year of publication) when I was given a schizoaffective disorder diagnosis following a menopausal psychosis, then psychiatric drug cocktails of risperidone, venlafaxine and lithium, and told that I had lifelong mental illness.  But I didn't believe it, took charge of my own mental health in 2003/4 and recovered.  It wasn't easy and required inner strength and resilience, to resist the prevailing culture.  Fortunately I'd had two previous experiences of complete recovery from psychoses and traumatic psychiatric treatment which gave me confidence.

The Scottish Recovery Network was "launched in 2004 as an initiative designed to raise awareness of recovery from mental health problems".  I have a paper copy of the original proposal document entitled 'Creating an Expectation of Recovery: A joint proposal for support to create an expectation of recovery from the effects of mental health problems in Scotland, 2004-2006".  It was a collaborative proposal by a group of mental health organisations, including Penumbra, ENERGI (Fife mental health group), Working to Recovery, NSF (Support in Mind Scotland) and SAMH. In the activities and expected outcomes within this founding document, SRN was to be hosted by a "user"organisation and it would have a co-ordinator "but much of the work is done by the membership".  According to the SRN website Penumbra hosts SRN and they have a strategy group of representatives from 'stakeholder groups'.

It seems that 'expectation of recovery' became 'raising awareness of recovery' during the formation of SRN, at the same time as I was making a full recovery from lifelong mental illness.  I expected to recover although I wasn't encouraged to recover, being in the severe and enduring cul-de-sac or dead end street.  Is this why the expectation of recovery was modified, because of the biomedical model and patients who are deemed to be 'treatment resistant' or have 'treatment refractory' depression?  In whose opinion?  I was depressed when on risperidone and venlafaxine, took an overdose of the anti-depressant and the dose was maximised, followed by lithium to 'augment' the venlafaxine.  No change, still flat as a pancake, no motivation, mornings were worst, my sense of humour had deserted me, along with my singing voice.  I had no option but to take back control, to survive.

Mary O'Hagan writes in a specially commissioned SRN article 'Legal coercion: the elephant in the recovery room':   "Legal coercion, through mental health legislation, empowers selected mental health professionals with support from the police and the judiciary to detain people in hospital, treat them without their consent, place them in solitary confinement (seclusion), and in many jurisdictions to compel people to take treatment in the community. Legal coercion erodes all the cornerstones of the recovery philosophy, yet it remains a core response in our mental health systems"

It seems too easy to resort to force when the option is available and I've seen little improvement since 1970 when I visited my mother in a locked psychiatric ward.  The use of ECT declined after pressure and now there are stronger combinations of psychiatric drugs, forcibly injected if necessary, when the patient is unwilling or non-compliant.  I have personally witnessed the major side effects of a clopixol acuphase injection where the patient experienced severe headaches after 24hrs, became aggressive and was banging their head off tables and doors.  And very recently a cocktail of psychiatric drugs, including haloperidol, olanzapine and sodium valproate sending a mentally distressed patient into a full-blown psychosis, whereupon they were diagnosed with schizoaffective disorder.

More women in Scotland are referred for advanced interventions, brain surgery for mental illness, and the mean age is 47 with an 18-84 years spread.  Similar to ECT in Scotland where two thirds women to one third men get the treatment, one third involuntarily or deemed to be 'without capacity', see Scottish ECT Accreditation Network report.  Of women over 60 getting ECT, half of them get it against their will.  To ensure that I won't be a candidate for either ECT or brain surgery for mental illness, I've written this in my Advance Statement which was completed in discussions with a psychiatrist who has witnessed my statement and put it at the front of my psychiatric notes.  My youngest son will be my Named Person if I ever happen to be detained under the Mental Health Act.

I believe that anterior cingulotomies and other brain surgery for mental illness exist because of the biomedical model in mental health which acts as a deterrent to recovery for certain groups of patients, those for whom the psychiatric drugs and ECT don't work.  I know that the drugs don't work for me and make me depressed, having been forced to take chlorpromazine in 1978 and 1984, then risperidone, venlafaxine and lithium in 2002/3.  Fortunately I managed to avoid ECT in 1978 when it was a 'popular' treatment, because my mother had many courses of it against her will in the 50's and 60's, and had a distressing time as a psychiatric inpatient.  She was persuaded/forced to eventually take a depixol injection every three weeks for life, until her death in 1998, aged 68.

The Dundee Advanced Interventions states that it "represents one of only a few clinical teams internationally who provide neurosurgical interventions for psychiatric disorders". In 'Status of neurosurgery for mental disorder in Scotland' by Keith Matthews (DAIS and Dundee University) and Mufta S Eljamel, BJPsych, 2003, the authors write:    "To assert that the brain of an individual with chronic, severe depression or OCD represents ‘healthy’ tissue now seems ill-judged and implausible. We can no longer conclude that neurosurgery for mental disorder is targeting ‘healthy’ tissue."
The DAIS team are committed to keeping brain surgery for mental illness alive and well in Scotland, and spreading their message far and wide.   They obviously believe that their service is valid and valuable, and have persuaded psychiatrist colleagues of the need for surgical intervention in cases of severe and enduring mental disorders that don't respond to psychiatric drug treatment or electroconvulsive therapy.

I say that the need for brain surgery in mental health demonstrates psychiatric system failure and therefore the recovery movement in Scotland hasn't fulfilled its expectations.  I want to see a renewed focus on recovery for all, a rediscovery of people's strengths and resilience with no recourse to irreversible brain surgery for mental illness.  Let's find better ways of treating people who are resistant to psychiatric treatment.  It makes sense.

Sunday, 3 March 2013

independent advocacy - been there, done that, got the straitjacket?

I remember working in advocacy from 2000-02, at the time of the Same as You Review for people with learning disabilities, one of the aims being that people would have more say and control over their lives.  I also worked in mental health, helping a patient in a locked forensic ward have a voice.  He eventually was discharged and came to volunteer in the organisation I worked in.

I remember attending Allies in Change, weekend courses in 2001, led by the Scottish Human Services Trust:

ALLIES IN CHANGE is a programme to promote the involvement of people with mental health problems and their families and friends.  The programme was developed by a consortium that brought together people who use services, carers and the organisations that provide services. It has been funded by the Scottish Executive from 1999-2002.  The main elements of the programme are:
• information packs, to give practical advice to people involved in formal meetings
• a series of newsletters, showing examples of different types of involvement
• the User and Carer Participation Route Map, to identify the strengths and limitations of current arrangements
• leadership development training for user and carer activists and staff who work in services
• events organised in partnership with local networks.
[from Partners in Change Newsletter 2001]

Then in 2002 I had another engagement with psychiatry, recovered in 2004 and got back on with my life for a few years until getting back into mental health matters through the peer support movement, and the SRN conference in December 2005.  It seems that in the intervening years something happened to the user/survivor voices in Scotland.  As in, they were assimilated or co-opted.

I remember the human rights movement aspect of advocacy, the expectation of mental health service and psychiatric system transformation.  Advocacy a powerful tool in the hands of ordinary people who stood up with others for the right to be heard, to be included.  Peer support following on from advocacy in standing with the person in and out of the psychiatric system. 

Now it seems that advocacy in Scotland is losing its place and has been superceded by the establishment.  Funding to Scottish Independent Advocacy Alliance is being reduced, 10% a year.  Meanwhile the Mental Welfare Commission is employing people with 'lived experience' of mental ill health, to do visits.  

Independent advocacy is one of the safeguards under the Scottish Mental Health Act:
    "The new Act gives every person with a mental disorder a right of access to independent advocacy and puts duties on Health Boards and local authorities to ensure that independent advocacy services are available. This right to access advocacy applies to all mental health service users, not just to people who are subject to powers under the new Act."

The tendering of advocacy services in health board areas in my opinion has weakened the position of independent advocacy and its effectiveness as a safeguard.  (Fife now has Circles Network managing)  If jobs and management are under threat then the resulting insecurity will mean that advocacy workers will be less inclined to risk their position by speaking out on behalf of the person with a 'mental disorder'.  It's obvious.

There appears to be no system of quality and improvement in advocacy services apart from in the localities where it's more like an add-on or afterthought to the main business of social work service delivery.  Advocacy workers are on low pay scales compared to the other mental health 'professionals'.  But not as poorly paid as peer support workers.  

The discrepancies in pay and position undermines the voices of experience who are coming to the table with cap in hand.  Grateful for the crumbs or so it seems.  Rather than having pride of place which they deserve, as survivors of the system.  For we have something important to bring to the conversation and should be encouraged to speak out with a critical voice.

I want to see independent advocacy restored as a strong safeguard and rewarded with the proper remuneration and support.  Otherwise human rights issues in psychiatric treatment will persist and power imbalance continue.  We've come too far to let ourselves be taken over and subsumed.  Resist the pressure, stand up and speak out.  You know it makes sense.