Wednesday, 30 April 2014

some observations and thoughts as a spectator at yesterday's NHS Fife health board meeting in St Andrews

Yesterday I was a spectator for the first time at the NHS Fife health Board meeting in the Medical School, St Andrews.  I'd only googled up yesterday to find out when the meeting was on after hearing from another activist, at the Poverty Alliance conference on Monday, that the public could view these meetings as an observer.  And found the information on the NHS Fife website.

Where it says:

"Fife NHS Board holds its Board meetings in public every other month. In the spirit of openness and in an attempt to meet local people, the meetings are held at different venues throughout Fife. Members of the public are welcome to attend and observe proceedings and at the Chair's discretion may be invited to contribute comment."

When I got to the venue there were printed papers on seats for the public which meant I had access to all the documents.  I'd had a quick look through before setting off from home and noticed that the meeting went on for most of the day, starting at 10am, so I planned to stay until the lunch break at 12.45pm. Which I did.  I had another meeting on in Dundee at 2pm, a workshop with the Scottish Medicines Consortium.

I recorded 5 pages of notes from the board meeting in bullet points, identifying topics, who said what and quotes that stood out from my perspective, also questions that I would have raised if a participant. 

Here are my observations from yesterday's board meeting in the morning session and points that stood out for me:
  • the first topic mentioned was the chair saying targets had been met or suchlike about "managing obesity in pregnancy".  My first thought was of when I was pregnant in 1976, 1978 and 1984, with my 3 sons, and how I put on much more weight than was recommended.  It's just how it was for me.  I was enormous when other folk hardly had a bump.  Nowadays I would likely be one of the "managed" pregnant women and I don't like to be managed.
  • I noticed throughout the meeting that consulting with the public or service users or carers was highlighted as being very important. Questions were asked as to what was being consulted on, the context and clarity. I was pleased to see this highlighted.  Tokenistic and tick-box exercises are the bane of my life in trying to be "meaningfully involved" in mental health service improvements.
  • Another interesting part of the morning session was an agenda item: Person Centeredness where yesterday a carer, who was also an NHS Fife nurse (in her uniform), spoke of her experiences trying to access support for her mother who had dementia and had a crisis, a psychotic episode.  Alongside her was a community mental health nurse who also spoke.  The main point that came across was the difficulties in accessing a social worker.  In fact this point was repeated while the CMHN input was praised by both carer and nurse.  I know from personal experience of being a carer how difficult it is to access a social worker, the waiting lists.  However the continual praising of NHS by these two nurses and the bashing of social work I thought detracted from the testimony.  It came over as biased and a conflict of interest.
  • Another observation about the carer testimony was the package of care at home eventually accessed for her mother who had a "full-blown" psychosis, "tried various meds" and was prescribed olanzapine.  The nurse didn't want her mother to be put in Stratheden.  I know how she feels.  I've had 2 sons in that hospital with psychoses, and was an inpatient there myself, and it was a risky business.  It would be useful if adults with psychoses could have the option of intensive home-based care and treatment.  It could be more cost effective in the longer term and help to prevent the "revolving door" scenario that is often the outcome for psychiatric patients in Fife who experience a psychotic episode and are mentally incapacitated, whether due to life circumstances or to neuroleptic drugs/medication.
  • Another question I have about working with a person experiencing psychosis: what about a clinical psychology intervention?  I noticed the head of psychology was present at the Board meeting but had no input to this conversation or in fact to any of the morning's proceedings.  I would like to see psychological therapies available for people experiencing altered mind states or psychoses as a first choice rather than drugs or nothing.  Psychiatric drugs are problematic in the longer term, causing physical health issues and disability, shortening lives.  It's not fair that mental health treatment continues to be the "cinderella service".
  • Next agenda item was the Health & Social Care Integration report by the lead officer in Social Work. I thought this was rushed through and would have liked more time spent on it but I suppose it was a health board meeting and not a social work one.  I want to study this report as it mentions their "organisational development approach" which on first reading seems to say all the right things, use all the right words but will it do what it says on the tin?  Eg "embed patients/clients and their carers in the decision making process".  How are they going to do this?  My experience of social work service involvement of users and carers is not a positive one.  Therefore I'm going to study this document and ask questions of the lead officer as to how they are going to implement the strategic objectives.  And I will keep on asking until I get a response.  I've learnt to be persistent when engaging with Fife public service managers.
  • Being a health board meeting the comments and input from the councillor on the committee, in a sense the odd one out, were a challenge to the group "norm" and he used phrases like "cuckoo land" when talking about budgets and overspend of £8million by NHS Fife.  When of course the Fife Council social work also has an overspend of £10.7million plus.  So tit for tat in terms of going into debt.  I think that it requires a persistent attitude to be the only council rep among health workers.  So well done to this councillor for sticking to his guns.  The other council social work high heid yin only came in to deliver his bit quickly then left.  You might describe it as ducking and diving.  There's no doubt that social work services nationally as well as locally are being targeted for criticism, and I heard this from the MSPs themselves at the carers parliament in 2012. 
  • I found that statistics were a major part of the Board proceedings but these don't show the whole picture and are only useful when the feedback from customers/patients/carers is equally taken into consideration.  Qualitative as well as quantitative feedback.  Complaints processes need to be robust, staff accountable for their actions.  In Fife psychiatric settings I haven't found this to be so.  Resulting in human rights issues and bad practice.  When patients are mentally incapacitated by an emotional crisis, mental health condition or psychiatric drug treatment then their critical voices may not be heard.  As in silenced.  This is where independent advocacy is needed.  Advocates who can help a person to speak up for themselves even when incapacitated.  A good advocate will get to know a person and be able to represent their views as if the person were speaking out themselves.  An advocate who isn't independent or who is unskilled will be of no use in helping a detained mental patient speak out.  In my opinion and experience.  I have advocated for people when a paid worker and for family members.  It is a crucial service that is emancipatory in its influence.
  • Finally there were other topics of interest to me like patient safety, delayed discharge at Stratheden, mention of "integrity", psychological therapies target, mental health strategy, FOI requests, MH Tribunals, serious incidents.
I found myself enjoying watching and reflecting on the proceedings, glad that I didn't have to be a member of the board.  I've never liked being on committees since the 1980's, living in Rigside, Lanarkshire, when I served on many, as chair, secretary or treasurer.  I'm more suited to writing, activism, community development, leadership and non-conformity than being a conscript and having to sit through reports and screeds of statistics that tell us little of human stories.


Saturday, 26 April 2014

on having to kiss a few frogs to find a prince

I was doing the hoovering this morning when a thought occurred to me.  As it often does when doing automatic (boring?) tasks like housework, cleaning and washing the dishes.  That you have to hang on in with stuff for a while before finding the bit of gold among the dross.

It happened recently when I attended an event which I thought would be more of the same old.  Which it was, up to a point.  But there was unexpected treasure to be found and glimpses of potential, of hope and of shared meaning.  

I know fine well that the frog kissing in life just can't be avoided, no matter how much you turn your cheek or put on the evil eye.  But I'm aiming to focus more on the possibility of prince charming around the corner.  These moments when the frogs clear and it all makes sense. 



Friday, 25 April 2014

the last straw

Yesterday was another experience of it being the last straw that broke the camel's back.

I'd been going to the "user/carer" group for years, hoping that the involvement would get more meaningful as relationships developed.  But there appeared to be a resistance to change among the "professionals" who just aren't prepared to rock the boat or take the people with lived experience seriously.

A new member came along to the group, a paid worker with a voluntary sector organisation.  It was apparent that the "professionals" were more comfortable in the presence of another "professional".  They discussed ways with this person about how they could be meaningfully involved.  In the presence of us who are still waiting for the privilege.

I first went to the group years back and identified myself as a survivor of mental illness.  Exposed my weakness.  Others did the same in the early days.  But they have fallen away.  Another survivor has recently come along to join us although he is careful with what he discloses.  Safer I suppose.  It's not a group to be identifying yourself as having or having had "mental illness".  You're more likely to be silenced or discriminated against.

The irony is that the group has a focus on talking therapies and training.



Thursday, 24 April 2014

clinical psychology in Scotland - handmaidens of psychiatry?

It seems to me that clinical psychology in Scotland does the bidding of psychiatry.  Is tied to the apron strings.  Has embraced the labels and constraints of the mental illness mantra.  And cannot break free for fear of the unknown.  Or of being consigned to oblivion, having no identity except for being under the authority of its master.

How then can their talking therapies do the real business of helping a person find release when they are bound by the same constraints?  Are they not just colluding with an oppressive system to keep the converts quiet and under control?

Is it the label "clinical" that ties them in to a system-centred way of thinking rather than a person-centred way of acting?  Two years ago our request for CBT was ignored and mindfulness given.  Our agency was disregarded and our voices not listened to.  You might describe it as being silenced. 

What use therapists who are not putting their clients and patients first?  But maybe a clinical psychologist is not a therapist first and foremost.  Maybe they are clinical team members before anything else.  Their loyalty lies with the doctor, the psychiatrist, the clinical lead in the health board area.

And this loyalty will likely translate into psychiatric system thinking.  Deciding what is best for a patient, regardless of what the patient wants.  Reading the psychiatric notes and taking what's written as gospel truth.  Believing the opinions of clinical staff before the voices and stories of the patients and carers.  

That's been my family's experience over many years.  Slanderous opinions written as fact then believed by clinical psychologists, passed on to their trainees.  Reputations destroyed by the stroke of a pen.  Stories unheard and voices silenced.

What then can universities do to shift the perspective of practising clinical psychologists in health board areas who are handmaidens of psychiatry?  Are they prepared to do anything or are they happy with the status quo, with psychiatric labelling, declarations of incapacity and badmouthing of character, based on nothing more than psychiatric opinion?

If they're not up for improving the situation for patients and carers, for providing person-centred talking therapies and for meaningfully involving people with lived experience in their training of clinical psychologists then what is the point of their endeavours?  It's just another tokenistic, tick-box exercise in the scheme of things.

Nothing to be proud of.




Joanna Moncrieff - ‘Angels and Demons’: the Politics of Psychoactive Drugs - on MIA

Joanna Moncrieff blog post on Mad in America - ‘Angels and Demons’: the Politics of Psychoactive Drugs.

Excerpts:
"We are now paying people to take drugs they don’t like and don’t want, while we continue to invest vast sums of public money in efforts to curb the use of drugs that people do like and do want. Prescription drugs like antidepressants, antipsychotics and so-called ‘mood stabilisers’ are widely promoted as good for your health. But the history of prescription and recreational drug use is more intimately intertwined than most people recognise. Attempts to disentangle the two have created a false dichotomy – with prescription drugs, at least some of them, set up as the ‘angels’ that can do no wrong, and recreational drugs cast as the ‘demons’.

Distinguishing drugs in this way makes no sense pharmacologically, and does not help us to understand what effects they actually have. The regulation of drugs is driven by political imperatives to produce a population that remains productive, diverted and obedient. The masses must have their opium, but must not be allowed to be so free with their drug use that they infringe public order or undermine the efficient operation of the economy." ...

"In the early 1970s legislation was passed in the US and UK that attempted to put the genie back in the bottle. Amphetamines, along with other drugs like LSD and cannabis, became prohibited substances. Legitimate medical uses of amphetamines were restricted to narcolepsy and ADHD, and production quotas were applied. Prescription and diversion plummeted, but people turned to illicitly manufactured substances or imported drugs like heroin and cocaine. Meanwhile prescriptions for benzodiazepines continued to rise."...

"The regulation of psychoactive substance use is not necessarily wrong in itself, and every society will wish to preserve order and prevent the ravages that excessive drug or alcohol use can entail. We should remember that among those at the forefront of the campaign for Prohibition were women, sick and tired of the abuse they suffered at the hands of drunken husbands. The irrationality of current drug policy, however, acts as an impediment to the development of informed and responsible attitudes towards the benefits and dangers of psychoactive substances."

Read complete blog post



Tuesday, 22 April 2014

'The Manufacture and ‘Maintenance’ of Oppression: A Very Profitable Business' by Richard Lewis on MIA

Richard Lewis blog post on Mad in America - 'The Manufacture and ‘Maintenance’ of Oppression: A Very Profitable Business'.

Excerpts:
"Opiate addiction is neither a disease nor a permanent condition. Methadone and suboxone maintenance programs are beneficial and highly profitable to a small minority of people; to those being “maintained” it becomes nothing more than a modern version of chemical slavery.

Some statistics to keep in mind while reading this blog: Someone dies every 15 minutes in the U.S. from a prescription drug overdose in all categories of drugs; 36% of those deaths involve some form of prescription opiate drug; although methadone accounts for less than 5% of opiate prescriptions it is implicated in one third of the opiate related deaths; and in over 30% of all opiate drug overdose deaths the victim has benzodiazepines in their system.

There is a disturbing theme and common thread interwoven within the fabric of several recent news stories on opiate addiction. These stories should be of particular interest to all those people learning about and fighting various forms of psychiatric oppression. They reaffirm my strong belief that a profit-based system stands as an historical impediment to the advance of science, medicine, and the care of those people experiencing extreme forms of psychological distress."

Read complete blog post 
 
Richard and I at Redhall Walled Garden, Edinburgh, September 2013

the fallout from target driven outcomes in mental health where I live

A short rant about the problems as I see it with Scottish Government's mental health division obsessional focus on targets and the negative effects in Fife where I live.

We don't all live in Edinburgh, the capital where government sits and the Queen has a palace, where the trams are gearing up and there's a crisis centre for self referral.  Where jobs are ten a penny or so it seems while the rest of us are lucky if we can get shelf stacking work.  Where there's an international festival and a tourist mecca.

The postcode lottery of mental health care in Scotland means that rural areas like Fife are playing catch up and in fact are getting left way behind, despite government assurances that mental health improvements are happening.  The service user voices in Fife got "burnt out" a long while ago with trying to be meaningfully involved and finding out the game was a bogey.

Promises of change and user involvement in mental health service design and delivery were empty words as plans were scuppered and improvements didn't happen.  The user led advocacy groups got silenced and an English service provider came in to speak on our behalf, silencing the critical voices.  Human rights issues and abuses in psychiatric settings continue.

[I phoned yesterday to try and speak to a social work service manager in mental health, regarding user involvement, and was told all the senior managers are away to Auchterderran for 2 weeks, to do an "audit".  Of what?  I don't know, they wouldn't tell me]

And who is responsible for this sad and risky state of affairs in Fife where meaningful involvement is a thing of the past?  The people who definitely aren't to blame and who aren't responsible are the psychiatric patients, mental health service users, their carers and family members.  We're the ones who are picking up the pieces after traumatic psychiatric treatment and bad practice.

So what is Scottish Government going to do about it?  

Over to you.


Sunday, 20 April 2014

on sacrificing one for the many

Some random thoughts this Easter Sunday on the sacrificing of one for the many.

There is a green hill far away,
outside a city wall,
where our dear Lord was crucified
who died to save us all.

We may not know, we cannot tell,
what pains he had to bear,
but we believe it was for us
he hung and suffered there.

He died that we might be forgiven,
he died to make us good,
that we might go at last to heaven,
saved by his precious blood.

There was no other good enough
to pay the price of sin,
he only could unlock the gate
of heaven and let us in.

O dearly, dearly has he loved!
And we must love him too,
and trust in his redeeming blood,
and try his works to do.




"Mrs Cecil Frances Al­ex­an­der wrote this hymn as she sat up one night with her ser­i­ous­ly sick daugh­ter. Many times, tra­vel­ing to town to shop, she had passed a small grassy mound, just out­side the old ci­ty wall of Der­ry, Ire­land. It al­ways made her think of Cal­va­ry, and it came to mind as she wrote this hymn. Music by William Horsley."

As a child this was a favourite hymn of mine when I went to St Matthews Church, Tay Street in Perth, aged about 9 or 10.   I remember getting dressed in my red coat and hat to go to the church myself, my mother helping me get ready.  My parents didn't go to church and I hadn't been christened as a baby but they didn't stop me from going.  I have a memory before this of going with a friend's mother to hear Gladys Aylward, missionary in China, speaking in a packed North Church, Perth.  As a child I believed in God and in prayer.

It was from an American psychiatric survivor activist that I first heard the phrase 'church of psychiatry' only in the last few years since becoming a psychiatric survivor activist myself.  It made sense because I've been involved with churches since 1981 when I became a Christian.

It's not been easy for me in the religious setting, as a non-conformist believer in Christ and non-believer in psychiatry.  There's something in me that won't keep quiet if something needs to be said.  It's got me into trouble in both places and has resulted in force or coercion, of one sort or another.  Then exclusion.  I have no regrets.

Religion and faith (or belief) are opposites to my mind.  The former is about having to do certain things to be acceptable whereas the latter is about being acceptable or accepted because of what Christ has done for us.  He has paid the price and become the scapegoat so that we don't have to. 

I think it's part of the reason as to why I can't be doing with psychiatric labels and the scapegoating of people for whom psychiatric treatment doesn't work.  The naming, shaming and blaming of the "treatment resistant", the "non-compliant", those "without capacity", who have "anosognosia".  When the truth is that the drugs don't work, they don't cure anything and they tie people in to a hierarchical, patriarchal system that infantilises its conscripts.

Now if people want to believe in the church of psychiatry, the dogma of mental illness and reductionist philosophy, then that is fine.  But please don't try to force it on me and other unbelievers.  The game's a bogey when you have to force your views on to others.  You've lost the argument.  





Saturday, 19 April 2014

'Investigation after killer hits out in hospital - Member of staff assaulted at Stratheden' Fife Herald 18 April 2014

Fife Herald news article, 18 April 2014 "Investigation after killer hits out in hospital - member of staff assaulted at Stratheden':




'21 Dead in Japan From New Johnson & Johnson Antipsychotic (Xeplion)' article on MIA

Mad in America article, 18 April 2014, '21 Dead in Japan From New Johnson & Johnson Antipsychotic (Xeplion)':

"The death toll among Japanese citizens who have taken Johnson & Johnson’s subsidiary Janssen’s schizophrenia drug Xeplion has climbed to 21, from 17 on April 10, prompting the Japanese health ministry to order the manufacturer to warn patients about its risks. Although a causal link between Xeplion and the deaths has not been established, the health ministry ordered Janssen to revise its package insert, considering the unusually high number of deaths since the drug’s recent release.

21 Users of Schizophrenia Drug Dead (Japan Times)"

"Among its (Xeplion) most frequently reported side effects are insomnia, headaches, respiratory tract infection, parkinsonism, increased weight, nausea, muscle and bone pain, tachycardia, tremors, abdominal pain, vomiting and diarrhea."


Friday, 18 April 2014

'Giving birth leaves mothers with post-traumatic stress' Herald article 18 April 2014

'Giving birth leaves mothers with post-traumatic stress' Herald article 18 April 2014:


"THOUSANDS of mothers in Scotland suffer from post-traumatic stress disorder every year after giving birth, according to experts.
Doctors believe that, like soldiers returning from war, women can suffer lasting psychological damage due to their experience.
Colin Howard, executive director of Manor Hall, Centre for Trauma in Stirling said that up to 6% of mothers in Scotland suffer from PTSD after giving birth, meaning almost 35000 women suffer from the debilitating disorder each year.
Experts say it can have a "disastrous" effect, with mothers suffering for years with traumatic flashbacks, and that it can damage their relationship with their child."
"One mother, who wished not to be named, said: "What was supposed to be one of the best experiences of my life, was the worst. Of course I love my daughter but it was all just too much.
I was in labour for over 24 hours and I had to have an episiotomy. While giving birth I ended up tearing and losing a lot of blood."
"Dr Alexander Yellowlees, medical director and consultant psychiatrist at the Priory in Glasgow said that he had treated a number of women who have suffered PTSD after giving birth.
Not many women talk about it, and I think that is why we do not hear about it. Like when soldiers came back from the war, they were just expected to get on with it, there is the same mentality here too." 

Thursday, 17 April 2014

Public Petition PE01493: A Sunshine Act for Scotland - date cancelled, to be rescheduled

The Public Petition PE01493: A Sunshine Act for Scotland by Peter John Gordon has been cancelled and will not now be considered on Tuesday 22 April 2014.  The date is to be rescheduled.

I believe that the reasons for this are to do with delayed responses to the petition from certain parties of interest.

"Calling on the Scottish Parliament to urge the Scottish Government to introduce a Sunshine Act for Scotland, creating a searchable record of all payments (including payments in kind) to NHS Scotland healthcare workers from Industry and Commerce":
http://www.scottish.parliament.uk/GettingInvolved/Petitions/sunshineact





it's all in the detail? (not in Scotland's national patient safety programme in mental health)

Just got sent this (meant to be) 2 page information leaflet from SPSP-MH - Scottish patient safety programme in mental health - for carers, patients, services users, called 'Safety First - It's all in the detail', which has no detail:


What is the point of writing a leaflet for folk like me that has nothing of real detail in it?

Here's my Email just sent to Dr David Hall, SPSP-MH lead and his colleagues from HIS - healthcare Improvement Scotland - Johnathan McLennan et al, copied to NHS Fife mental health leads Graham Monteith et al, asking for more detail:


To be continued ...


my latest blog post on SPSP-MH - Scottish Patient Safety Programme for Mental Health

My latest blog post on SPSP-Mental Health: 'nothing to report':

"I wonder what's happening in Fife regarding patient safety improvements in psychiatric settings?

I ask this question because I really don't know what's going on in Stratheden Hospital, near where I live and where I was a psychiatric inpatient back in 2002, and more recently my youngest son, on a number of occasions.  We found it to be a very risky experience as an inpatient for all sorts of reasons, not least the lack the resource but also to do with poor management.

For me to know what's really going on regarding patient safety improvements in Stratheden then I'd need to ask the patients themselves and the carers, to find out what they were saying about it.  I'm not going to believe the reports which in the past said everything was fine.  And then I found out that wasn't the case.  It's a matter of trust.  

I did an FOI request about 6 months or more ago, to NHS Fife, regarding their procedures for gathering patient and carer feedback in Stratheden Hospital.  I'm still waiting for an answer.  I did get a selection of completed forms that were random and told me nothing about procedures.  I wanted to know how thorough the monitoring and evaluation of inpatient/carer feedback was.  For I know that when my son was a patient we didn't receive any feedback forms to complete.  I wondered if they only asked the folk who had a positive experience to feedback?  Who knows.  It's a mystery.

I have found that the more questions you ask NHS Fife about their policies, procedures, monitoring and evaluation, in psychiatric settings, the less information you receive and the door is closed firmly in your face.  They don't seem to be accountable to the public who pay their wages.  And it tells me that they don't have the systems in place to monitor what they do.  Has no-one been asking them to justify their existence?  I wonder.


Wednesday, 16 April 2014

selfie taken yesterday at Murray Royal Hospital, Perth, remembering my mother

Facebook photo and post just uploaded:

"Selfie taken yesterday in front of Rohallion secure psychiatric wards, Murray Royal Hospital, Perth. Built on site of previous Kinnoull Ward where my mother was a locked-in patient in 1970 and at other times. Where she got many courses of forced ECT, eventually was put on a depot depixol injection until the day she died on 19 March 1998 aged 68yrs young."


Lest we forget.


SOAP Protest - Justice for Victims of Psychiatric Assault - Royal Courts of Justice London, 9 April 2014

 





On Wednesday 9 April 2014 Speak Out Against Psychiatry (SOAP) organised a protest 'Justice for Victims of Psychiatric Assault' outside the Royal Courts of Justice, The Strand, London.

SOAP campaigns to end forced treatment, ECT, and the psychiatric drugging of children. They support survivors of psychiatry to Speak Out with regular protests. They educate the public about what is happening in our psychiatric system and promote humane approaches to helping people in distress.

"It is nigh on impossible to get a case into court for the physical and mental damage caused by psychiatry - coercion, restraint, psych drugs and Electroshock - ECT.  Due to the low possibility of success, 'no-win-no-fee' solicitors will not take on your case. If you represent yourself you risk having to pay the costs for the other side which can exceed 

£50,000"

SOAP Facebook page








Sunday, 13 April 2014

We should all be feminists: Chimamanda Ngozi Adichie at TEDxEuston

TEDxEuston talk - We should all be feminists: Chimamanda Ngozi Adichie




"We teach girls to shrink themselves"
"Many men do not notice gender"
"Gender and class are different forms of oppression"
"Culture is about the preservation and continuation of society"
"Culture doesn't make people.  People make culture"

"Chimamanda Ngozi Adichie a renowned Nigerian novelist was born in Nigeria in 1977. She grew up in the university town of Nsukka, Enugu State where she attended primary and secondary schools, and briefly studied Medicine and Pharmacy. She then moved to the United States to attend college, graduating summa cum laude from Eastern Connecticut State University with a major in Communication and a minor in Political Science. 

She holds a Masters degree in Creative Writing from Johns Hopkins and a Masters degree in African Studies from Yale University. She was a 2005-2006 Hodder Fellow at Princeton, where she taught introductory fiction. Chimamanda is the author of Half of a Yellow Sun, which won the 2007 Orange Prize For Fiction; and Purple Hibiscus, which won the 2005 Best First Book Commonwealth Writers' Prize and the 2004 Debut Fiction Hurston/Wright Legacy Award. In 2009, her collection of short stories, The Thing around Your Neck was published. 

She was named one of the twenty most important fiction writers today under 40 years old by The New Yorker and was recently the guest speaker at the 2012 annual commonwealth lecture. She featured in the April 2012 edition of Time Magazine, celebrated as one of the 100 Most Influential People in the World. She currently divides her time between the United States and Nigeria."


Saturday, 12 April 2014

Inclusion Scotland AGM & Conference 11 April 2014 on Storify

Here is my Storify of tweets from yesterday's Inclusion Scotland AGM & Conference, 11 April 2014, in Glasgow.

This year there will be a report on what has been done to implement the UN Convention on the Rights of Disabled People.  Inclusion Scotland wanted to find out about the views of disabled people in Scotland on:

• What positive progress has been made?
• What needs to be done to make more progress?
• What should be the priorities for action in a future Scotland?


Some tweet excerpts:









Wednesday, 9 April 2014

empowerment, emancipation and lifelong learning (in the real world)

That's what being a community worker was all about in the Scotland that I worked in and was involved with from 1980 up to 2008.  Land of the free where anything seemed possible if you had the will to do it and persisted in it.

I remember in one of my last paid jobs, in Adam Smith/Fife College 2006/8, where I set up and managed a student mentoring project, also found work placements for students with disabilities and others who were long-term unemployed, that a manager said to me I'd never be able to find placements because the last person wasn't able to.

Well, I thought, what a daft thing to say and didn't believe it.  I found many placements for students, some of whom got jobs out of it.  Others had a life affirming experience being treated with dignity in a workplace, learning to be part of a team.  Here are a couple of newspaper article about a placement at KingdomFM, for which I wrote the strapline, and another one about a workshop I organised in the Leven campus:


see me front right!

I had a great time working at the college where I also achieved another postgraduate qualification, in care lecturing.  I went from this emancipatory setting, which had hierarchical stuff going on, into Scotland's mental health world as a recovery trainer, promoting the peer support model.  

And came face-to-face with a bullying, discriminating environment where I was excluded from many meetings and events for being myself.  Much of this badmouthing and backstabbing came from the user movement and the hangers-on.  I soon learnt to watch my back and practise my skills as a resistance fighter.


tokenistic participation of "service users" in Scotland's mental health world - like throwing scraps to the animals

I've just sent an Email with this strapline to G (not God) about my take on his dealings with the voices of experience, the service users and survivors in Scotland who want to be meaningfully involved in mental health matters but in reality have been marginalised and patronised.  In my case, silenced for speaking out and having an independent voice.

G has moved on to a higher place (not heaven) and is acting a part.  That should suit G as I've always thought he was a good actor.  He's also a good writer but not a good leader or manager.  Unfortunately.  Because the roles he's played required these skills more than the acting and writing.

Although I'm very annoyed with G on one level, on another level I can understand where he's coming from.  However that doesn't affect my activism and campaigning.  Because my family are everything to me.  G will know what that means.  

Scotland needs effective leadership and management in its government departments, especially in the area of mental health.  It's not enough to be able to write fine rhetoric or to be a skilled actor.  We need leaders with vision who are team players and willing to take risks.  

Nothing less will do in Scotland's mental health world where my family have all been conscripts.

the challenge of keeping voices of experience independent in Scotland's mental health world

Today, in Emails with a government high heid yin, I've been reminded of the issues around government funding of national mental health user voice groups and the challenges of independence, being free to speak out about human rights abuses and incorporating critical voices into the mix.  I wonder if it can be done, bearing in mind the history of user involvement in Scotland?

I've heard that in Fife there were voices of experience speaking out and being involved back in the 1990's and into the 2000's but they soon became burned out and disillusioned with tokenism and tick-box (TT) exercises.  This happened before I got involved in 2008 with Peer Support Fife and WRAP facilitation, and then in 2009 campaigning against the advocacy tendering in Fife. 

Since then in Fife there has been little meaningful involvement (MI) of people with lived experience, according to the local voluntary organisations working in mental health.  I know of one activist who is involved elsewhere, out of Fife, in another setting but still having an influence.  

But the ground here is barren towards any real fertilisation of MI seeds.  They are too used to TT involvement as I think it's less effort for statutory agencies and easier to make targets by saying they've asked service users' opinions.  They admit it's a focus group, I'll say that for them.  They're under no illusion that it's meaningful. 

In the national scene VOX purports to be a mental health user led and member organisation, representing the views of its members, but it's not an automatic membership process and applications have to be filtered through their board of management.  This is the case for individuals and groups who have to be "approved" by the high heid yins at Voices of eXperience.  

Which means it might only be certain voices and not others who are heard.  I've tried being a member and it didn't work out.  I found out that when my son was dehumanisingly treated and I was in pain then there was no support from VOX.  They weren't in solidarity and did nothing to help me.  So what use membership of a group that has no benefit when times are hard?  A fair weather friend.

I blame the government's mental health division for the exclusivity of VOX and its having to weed out the awkward among us.  The VOX board chair works with a government quango and this is a conflict of interest which I've already highlighted and others have agreed with me.  It muddies the water for the cause of independent voices.  Compromises the membership's viewpoint which will be moderated to fit.  

For the government high heid yins just don't like critical voices or to be challenged in their thinking or doing.  It's a nuisance for them having to "accommodate" people like me who just won't "be quiet and go to bed".  Rather we speak out continuously about human rights abuse in psychiatric settings at every opportunity.  

The team at government haven't got time to listen to our grievances and prefer the voices that are more accommodating, that hang on their every word and agree with the fine rhetoric and impossible targets.  Resulting in actors and puppets, reading their lines and dancing to their tune.  It looks good and ticks a box, meets a target, everyone's happy except the people with lived experience who are struggling on the ground.

Government doesn't want a hard life of having to be accountable to user groups with critical voices, demanding their human rights and to be treated fairly and justly.  Much easier to use the voices of experience as a focus group for gathering views and ticking boxes.  Commitment 1, tick.  Commitment 2, tick.  And so on.  Ad infinitum.  As usual.





Tuesday, 8 April 2014

rattling cages or fighting for human rights?

I'm wondering, after Email exchanges today with a government high heid yin, if the man in power sees his engagement with me as something like this:




whereas I see my exchange with him as something like this:




or this:



Onwards and upwards as an old mentor used to say to me ...


revealing yourself

I wanted to say a few words about the difficulty in Scotland's mental health world of being the person that you are and revealing this to others.  For me it's easier to be myself and to be congruent.  Especially if it's about human rights abuse in psychiatric settings.  I can do no other than speak out about it.  Especially if it's about me and mine.

I've noticed at mental health meetings and events that people with lived experience are in the habit of playing a part, and noticed this recently at the #seeme14 event in Dunblane.  Where on one occasion it was like a scene out of a Shakespeare play with a king and queen in residence.  Acting out royally.  I made a sharp exit so as not to spoil their performance.  I'd seen it many times before.

The reasons for people hiding their true selves I think will be many.  Firstly, and I suspect mainly, for protection.  So that others won't attack them for expressing their opinions which may be unpopular or too honest.  (how can you be too honest? I don't know as I prefer honesty)

So when I came into the mental health world in 2008, to be "meaningfully involved", I came in without a mask and not playing a part, just being myself.  Before too long people wanted me to hide my true self, conform, play a part, just like them.  They said I was "scary".  As a community worker of nearly 30yrs, in many settings, I'd not heard that said to my face before.  It was puzzling.

I'm non-conformist, it's why I survived psychiatry, made a complete recovery, and there's no way I was going back into the box, no matter how much they tried to make me fit in.  So I got excluded, pushed out.  Still I wouldn't conform.  Why should I?  That wouldn't be me. 

If you're in the habit of playing a part and hiding stuff then it's likely to be very difficult to start revealing yourself to all and sundry.  Easier to be the real you with a chosen few confidantes and wear the mask in public.  However I'm one of those folk who can't resist looking behind it or even yanking it off.  To get to the real person underneath.

It's the child in me that enjoys the game and the adult in me that appreciates a whodunnit, a mystery to be solved.  What's going on, why did they do that, who is the real person behind the mask?  Or as my 5yr old granddaughter puts it, who are the goodies and the baddies?


Little Boxes by Malvina Reynolds


Little boxes on the hillside,
Little boxes made of ticky tacky,
Little boxes on the hillside,
Little boxes all the same.
There's a pink one and a green one
And a blue one and a yellow one,
And they're all made out of ticky tacky
And they all look just the same.

And the people in the houses
All went to the university,
Where they were put in boxes
And they came out all the same,
And there's doctors and lawyers,
And business executives,
And they're all made out of ticky tacky
And they all look just the same.

And they all play on the golf course
And drink their martinis dry,
And they all have pretty children
And the children go to school,
And the children go to summer camp
And then to the university,
Where they are put in boxes
And they come out all the same.

And the boys go into business
And marry and raise a family
In boxes made of ticky tacky
And they all look just the same.
There's a pink one and a green one
And a blue one and a yellow one,
And they're all made out of ticky tacky
And they all look just the same.

Words and Music by: Malvina Reynolds



Monday, 7 April 2014

Reflections on Scotland's Re-Founding Anti-Stigma Campaign Event 3/4 April 2014


Last week I was a participant in the 'see me' now (#seeme14) anti-stigma campaign, "re-founding" 2 day event in Dunblane, Scotland, which was advertised as a "Movement for Change" and wanted people who were "passionate about challenging stigma and discrimination" to join in.  

I couldn't resist and put my name forward for a place, not expecting to be invited, yet I was.  And so I went along with my critical hat on as usual, expecting to be challenged and hoping not to be bored.  I find that these days life is too short to be putting up with dull affairs or hierarchical shenanigans.

I'd been asking around before the event, to find out who else was going among the allies I have in Scotland, people of like minds who if all else failed then at least I could pass the time of day with them at the tea-break or lunch time.  It seemed that not everyone had got a place and on the opening first day we heard that the event had been oversubscribed and that we were indeed the "chosen ones".  I looked around the hotel conference room and saw about 70% or more were women, and when I asked about this later was told that yes more women had applied to attend although they'd tried to encourage more men to apply.

arriving Thursday morning at Dunblane Hydro
Many of the folks attending were staying overnight at the hotel, part of the deal for taking part, although I preferred to drive home on the Thursday evening, after dinner, to sleep in my own bed.  I knew fine well that if I spent too much time in everyone's company I'd be even more intolerant on day 2 of the proceedings.  

For it's been over 6 years of trying to be meaningfully involved in Scotland's mental health world that has tried my patience and given me a thick skin, having to resist what I see as cronyism and conformity with its resulting exclusion and scapegoating if not falling into line.  And I've never been very good at falling into line, doing what I'm told for no good reason except to be popular.  I'd rather be an outcast.

I'd come to the event with a certain level of skepticism about a social movement happening because they were announcing it.  In my experience social movements are grassroot uprisings of dissatisfied customers and collectives who are not prepared to put up with any more nonsense (or stronger word).  As a community worker since 1980 this is the very soil in which I've worked and lived.  In ex-mining communities and council house (social housing) schemes where we started up projects ourselves in response to local need eg playgroups, youth clubs, visiting the housebound.  We got help from statutory agencies in the way of resources, training, funding, information, and set up the systems to deliver the service.  As volunteers we put our whole hearts into it because it was in our community and would benefit all of us and others too.

The #seeme14 event had a focus and foundation of "people with lived experience" and the majority attending fell into this bracket, confirmed by the voting through electronic button devices on tables.  These devices were useful at some points but at others I got fed up with the choice of answers on them eg what animal would you describe something as (can't remember what).  The choices available weren't ones I would have chosen so I ended up not doing the button-pushing by day 2.  The novelty had worn off.  So I gave my button device to someone else so they could have two goes at it.  Same with the raffle ticket for winning a night at the hotel.  It felt like being at a bingo tea or outing for the elderly.

I'm a psychiatric survivor activist and human rights campaigner so the term "people with lived experience" doesn't really do it for me.  But that's OK if other folk are happy with it.  However some high heid yins at the event on the Thursday weren't happy with the blogging I'd been doing that mentioned them.  I engaged with one of them in the passing and they were annoyed, using words like libel, to which I responded, daring them to sue me, to take me to court.  As an unpaid carer living in a council house I've got nothing to lose except the clothes off my back.  My dander was up.  I'd been bored with the table task where we'd had to sit writing stuff on bits of plastic in the shape of leaves, and welcomed a bit of debate.  I knew it wouldn't be long before the straitjackets were out.  Another guy got angry with me when I wouldn't agree with his viewpoint.  He must have been bored too with the leaf writing.  But no excuse to take it out on me.

The leaf writing stuff was about getting people's views on this and that, so as to collate them in an action plan for taking forward.  It was described as an engagement tool, involving everyone equally but I thought it favoured the writers among us who could speak at the same time, like me.  Therefore it wasn't really an effective inclusion tool.  That's one of the reasons I got bored with it.  While I wrote ten leaves others were still getting round to writing their first one.  It was an unfair advantage and I couldn't just sit there waiting for everyone else to catch up. Patience not being my strong point.  So I went on a wander and a sparring with objectors, tweeting and checking Emails on the way.

view from hotel window at tea-break
The Dunblane Hydro hotel sits on a high vantage point looking over the countryside so it was a restful venue at the refreshment breaks, a chance to catch up with folks and to make new connections.  This for me was the highlight of the 2 days, the networking and sharing of stories, at the breaks, workshops and tables.  Despite the tasks set for us and the hierarchical shenanigans of some high heid yins there was time to engage and connect if you resisted the other pressures and were persistent.

I participated in the "re-branding" workshop which was a positive affair led by skilled facilitators (makes a change) and discussions at my table helped to shift my perspective about past achievements of the 'see me' campaign, of which I've been critical.  I could see that their work with volunteers has had a positive effect.

‘see me’ Scotland postcard ‘Crowd Surf
However I am keen that iatrogenic stigma, the labelling and disabling of the "mentally ill" by psychiatry and mental health services, should be a focus of the future Scottish anti-stigma campaign.  Society hasn't been the main culprit in my experience of naming, shaming and blaming.  Providing you keep quiet about any mental illness labels and only share with people who have insight.  

It's in the psychiatric setting that my family has been discriminated against in the main because of the biomedical model of mental illness tying us to lifelong prognoses and disabling drug treatment.  Some of us didn't believe or accept the labels and made our escape.  Others of us stayed in the system or services and lived with the effects of medication/psychiatric drugs.  Each to their own but for me it had to be a breaking free when possible.  I am very opposed to coercive psychiatric treatment and drugs being the only tools of choice for people with psychoses or altered mind states.

Prof Alan Miller, Scottish Human Rights Commission, addressed us on the first day, topic of 'Human Rights Based Approach in Mental Health'.  He spoke of the move in services from a needs to a rights base, from systems to people, and that with the Scottish Independence Referendum happening in September there was more of a focus on values, integrity and dignity.  Prof Miller mentioned Scotland’s National Action Plan for Human Rights (SNAP), "a roadmap for the realisation of all internationally recognised human rights ... based on evidence and broad participation".  I had submitted an individual response to this plan and have participated in collective events also.

A thought-provoking question was posed to Prof Miller by a fellow participant:

"Trying to get hold of human rights is like trying to get a grip of a handful of steam.  In the North Sea I worked with Louisiana oil men who used to say: 'When you're up to your a@s in alligators it isn't the time to be draining the swamp'.  Why is it so difficult in today's Scotland when having experience of mental illness to access your human rights?".

I don't remember the question being answered although I do remember Prof Miller saying something about "capacity".

In conclusion, having gone to the #seeme14 foundational event with a critical voice and a skeptical view I came away from it with a mixture of feelings and thoughts that, after a night's sleep, surfaced as seeds of hope that change is possible.  Because of the people with lived experience, the psychiatric survivors, who throughout the 2 days told their stories and shared their experiences.  And I was one of them, in solidarity.

There was equality despite the hierarchy.  There was a unity despite the differences of opinion.  Voices were heard despite the silencing that went on.  I look forward to seeing what develops in Scotland, from the grassroots, in the movement to make straight paths and level playing fields.  Meaningful involvement of people with lived experience.  The potential is there.  The challenge will be in the doing of it.