Saturday, 31 May 2014

I'm the guy in green at the front ...

which one are you?

incestuous relationships between Scottish Government and mental health service user leaders need to STOP!

An Email just sent to VOX (voices of experience), who describe themselves as "a National Mental Health Service User Led organisation", on the back of the Email sent to Fran Silvestri of IIMHL:

"VOX should be representing the voices of lived experience in Scotland and not kowtowing to government high heid yins. 

I contend that the VOX Board Chair's paid position with HIS (Healthcare Improvement Scotland) is a conflict of interest and compromises the work of VOX.  A Scottish national mental health service user led organisation should be standing with the psychiatric survivors and against psychiatric abuse."

Email just sent to IIMHL President & CEO Fran Silvestri

Here is the content of an Email just sent to Fran Silvestri, President and CEO of IIMHL, copied to leads at Healthcare Improvement Scotland (HIS), Scottish Patient Safety Programme in Mental Health (SPSP-MH), Scottish Government Mental Health Division, to the VOX Scotland (mental health service user organisation) Board Chair who also works with HIS (conflict of interest), and to Scottish Government Ministers:

"After I was told in a phone call yesterday by Ruth Glassborow, Healthcare Improvement Scotland messenger, of my IIMHL exchange exclusion she asked if I wanted Fran Silvester to phone me.   I corrected Ruth, saying that your name was Fran Silvestri.  I saw no point in discussing this with you as the HIS and Scottish Government mental health division minds were made up.  They didn't "feel it will be for anyone's benefit" for me to attend the patient safety exchange.  [I obviously don't count as "anyone"]

Four years ago in 2010 I raised issues with Geoff Huggins to do with Lomond Ward, Stratheden Hospital, near where I live in Fife, Scotland.  I told him about the risks to female patients in that ward, the inappropriate behaviour of male nurses, about a Russian female student from St Andrews University who wasn't keeping her clothes on and nurses drawing attention to this in front of male patients.  A mixed gender ward where male patients are in single bedrooms directly opposite the female dormitories.  No nurses about to keep an eye on behaviours.  Patient safety issues. 

For interest, here is a video prompted and filmed by Healthcare Improvement Scotland, involving Stratheden Hospital senior nursing staff, many of whom I know personally and who were in charge of the ward where my son in February 2012 was locked in a seclusion room for hours at a time, no toilet, broken hand untreated, light switch outside, unobserved, his life at risk:

In this video you will note that fun is being made of restraint.  [My son was face-down restrained in Lomond Ward after being assaulted by a staff nurse on 1 Feb12 prior to his being locked in the seclusion room]  HIS and NHS Fife called the film "fun stuff" when they uploaded it to the Scottish Patient Safety Programme in Mental Health website which is where I first saw it.  

I was horrified to see such a film made in a psychiatric ward dining room in Stratheden Hospital.  It looks like the IPCU ward where my son was dehumanisingly treated and the room in which I was bullied by a group of 5 nurses on 4 Feb12 for trying to film my son's broken hand and bruising.  I wasn't allowed a camera but HIS obviously was.

I had to complain on a number of occasions about this inappropriate video before it was completely removed from the SPSP-MH website.  Why was the film made in the first place?  Who thought it suitable?  I don't know as no-one has explained their actions to me.  I suspect that HIS staff are unaccountable to the public who pay their wages, to unpaid carers who are picking the pieces up after dehumanising psychiatric treatment and to people with "lived experience" who have had their human rights abused in psychiatric settings. 


I have asked many questions as to why dehumanising practice went on at Stratheden Hospital for so many years (30+).  My concern is that it's still going on and patients are at risk of injury, and women at risk of sexual exploitation.  I cannot be silent about these matters. 

I have asked SPSP-MH and HIS what they are doing to improve patient safety in Stratheden Hospital.  They have not responded.  And now I am banned from attending the IIMHL Scottish patient safety exchange so I won't be able to ask questions there.  My voice silenced.

You will understand my concerns yesterday on hearing of my exclusion from the IIMHL exchange with only 10 days warning.  The only reason given by HIS is that they don't "feel it will be in anyone's benefit" for me to attend.  I have no say in the matter.  HIS can do what they like.  Make fun stuff videos about restraint.  Not be answerable to the public.  

And these are the people tasked with leading on patient safety in Scotland's mental health and psychiatric settings?"

Friday, 30 May 2014

some tweets in resistance to banning from HIS

just heard that I'm banned from the IIMHL patient safety exchange in Scotland

Here's an Email I've just sent to IIMHL (international initiative for mental health leadership) exchange folks:

"I am writing to let you all know that I have just received a phone call from Ruth Glassborow, Healthcare Improvement Scotland, who tells me that I am not welcome at the Scottish Patient Safety exchange with IIMHL and therefore will not be allowed to attend on 9/10 June.  Ruth tells me that the decision was made by herself, Penny Curtis, Scottish Government mental health division, Johnathan MacLennan and Jo Matthews whose job title I believe is "head of safety".

Ruth said "we don't feel it will be for anyone's benefit" for me to attend (what about my benefit?).  And that if I attended then others wouldn't attend.  Not sure who the "others" are as Ruth didn't say.  In a sense I am being sacrificed for the "others".

Although I have been banned from the IIMHL exchange I will still be attending the Manchester IIMHL conference and have booked my train travel and accommodation, paid my own way.  I hope to catch up with you there, if you can risk it, and to hear what my Scottish colleagues are saying about patient safety in psychiatric settings here in my homeland.  I'm thinking that my story might be different to theirs. 

So much for "voices of lived experience" being heard.  Only in certain settings it seems."

My reaction to the news?  I laughed.  And I'm still laughing about it.  How daft.

Thursday, 29 May 2014

I am not happy at being used by SAMH as a stepping stone then dumped and picked on

In 2011 I met with SAMH senior managers on a number of occasions to discuss the topic of peer led crisis services in North East Fife and to plan "At the Sharp Edge' on 20 September 2011 in Dunfermline, Fife.  This conference was attended by over 80 people, including a group from SLAM (South London and Maudsley NHS Foundation Trust).  

I did most of the organising for this event, voluntarily, and SAMH shared the costs.  I am an unpaid carer and psychiatric survivor, supporting my son after dehumanising treatment in Stratheden Hospital in February 2012.

The plan was for SAMH to work with myself and others in NE Fife to set up a peer led crisis service, and so we had meetings until 2012 when suddenly the goalposts changed, the meetings stopped and nothing more happened.  Some of the senior SAMH managers left the organisation, the ones who we had been meeting with in Fife.

Now I hear that SAMH has won the contract for supporting long and medium stay patients out of Stratheden Hospital through the rehabilitation redesign programme.  My thoughts?  They used me to get a foothold in NE Fife and then dropped me to pursue their own interests.

I have been fighting a human rights campaign in Stratheden Hospital, challenging dehumanising treatment of patients, the use of a seclusion room, patients being locked in for hours at a time with no toilet, while SAMH have been making money.

Then recently at the See Me Dunblane event the SAMH chief executive threatened me with libel because I had blogged about him attending a big pharma event (blog about our Email exchanges).  It's a free country and I have every right to question the motives of Billy Watson, SAMH Chief Executive, if he is speaking at a Janssen pharmaceuticals sponsored event.  

I say shame on SAMH for using an unpaid carer then trying to bully me into silence.  Shame on you!  SAMH used to be an organisation that supported people with lived experience and stood up for human rights issues.  Now it seems they are all about profit and about using people with lived experience as stepping stones.

I am not happy at being used by SAMH as a stepping stone then dumped and picked on.

Sunday, 25 May 2014

let's hear it for 'One Flew Over the Cuckoo's Nest'! hip hip hooray!!

I am very grateful for the book by Ken Kesey and film 'One Flew Over the Cuckoo's Nest' directed by MiloŇ° Forman and starring Jack Nicolson.  

Hip hip hooray!  Hip hip hooray!  Hip hip hooray!

In 1978 when I experienced what psychiatrists called a "puerperal psychosis" due to hormone imbalance, after my 2nd son's induced birth, I voluntarily entered Hartwoodhill psychiatric hospital where I was put under pressure to accept ECT.  I knew what it was and didn't want it because my mother had many courses of shock treatment against her will, in Murray Royal Hospital, Perth, in the 1950's and 1960's.  She didn't want it either.

I managed to escape the threat of ECT by running out of the ward in my pyjamas at the visiting time, aided and abetted by my husband.  I had to go back in the ward because of muscle spasms due to coming off the chlorpromazine which they had forcibly injected me with, on my backside. 

But I avoided the ECT although the nurses gave me a telling off, saying I would have recovered quicker with the shock treatment.  I didn't believe them and thought they were mad to say this, lacking insight.

In 1981 I saw the film 'One Flew Over the Cuckoo's Nest' at a youth leaders' training weekend at Wrangholm Hall, New Stevenston, Lanarkshire, and thought it a wonderful, accurate portrayal of what it was like from the psychiatric inpatient viewpoint.

Then in 1984 I had another altered mind state right after the birth of my 3rd son, also induced by chemicals to deliver on the day shift.  This time around in Hartwoodhill psych open ward I saw no queuing up of people getting ECT and was put under no pressure to accept it.  I assumed the film had impacted on this.

Here is an article I just read today about the film in Psychiatric Times: 'We are still flying over the cuckoo's nest' by psychiatrist Steven Moffic who says: "Now, more than 50 years since One Flew Over the Cuckoo’s Nest was published and almost 40 years since the movie was released, the issues seem as relevant today as they were back then.". 

I agree.  Especially as in Scotland we are seeing shock treatment or ECT being promoted as a life-saving treatment by psychiatrists and brain surgery for mental illness or NMD being promoted by the Dundee Advanced Interventions Service.

I say let's promote alternative ways of working with people in altered mind states, psychoses and mental distress that doesn't involved forcing treatment into or onto a person via psychiatric drugs or shocks to the brain then needed brain surgery as a last resort.   

New pain for old is not a humane way of working with our fellow human beings.  In my opinion.

Wednesday, 21 May 2014

taking part in user testing the EUPATI e-learning platform

This week I'm taking part in user testing the EUPATI e-learning platform on Moodle.

"The consortium project "European Patients‘ Academy on Therapeutic Innovation" (EUPATI), funded by the Innovative Medicines Initiative, will provide scientifically reliable, objective, comprehensive information to patients on medicines research and development. It will increase the capacities and capabilities of well-informed patients and patient organisations to be effective advocates and advisors in medicines research, e.g. in clinical trials, with regulatory authorities and in ethics committees."

"The EUPATI Training Course aims to encourage participants to apply knowledge and skills acquired via three main areas: 

Patient Representation: EUPATI Patient Experts could actively engage in representing a patient perspective in the medicines development process by interacting with scientific committees, HTA agencies, industry, regulatory bodies, academia and other relevant stakeholders.

Communication: EUPATI Patient Experts could contribute to raising awareness on patient involvement in medicines R&D amongst lay patients, hard-to-reach patients and the lay public. Some examples of activities: writing articles and press releases; organising press conferences; facilitating cooperation with media; being a spokesperson in TV and radio programmes; utilising social networks and blogs.

Education/Training: EUPATI Patient Experts could play the role of facilitators/trainers by engaging in activities supporting the dissemination of the education and information programmes for audience 2 - patient advocates, and audience 3 – lay patients and the general public in their countries through their patient communities and networks. Some examples of activities: providing training to patient advocates; leading workshops; running information sessions for people interested in participating in clinical trials or wanting to learn more."

Tuesday, 20 May 2014

#ourfuture14 Health & Social Care Alliance conference 19 May 2014 on my Storify

A Storify of my tweets and photos from #ourfuture14 Health & Social Care Alliance conference 19 May 2014 and then the launch of the Health and Social Care Academy in the evening at the City Chambers, Edinburgh City Council. 

"Scotland – small country, big ideas – imagining our future…" The Alliance

Monday, 19 May 2014

giving a short interview at today's Health & Social Care Alliance conference #ourfuture14

Having my say and speaking to camera at today's Health & Social Care Alliance conference in Edinburgh, in the morning tea-break (cheers Nancy!):

Sunday, 18 May 2014

in today's Herald 'Urgent review as nearly half of health boards ignore pharma disclosure rule (Registers of Interest)'

'Urgent review as nearly half of health boards ignore pharma disclosure rule' news piece in Sunday Herald 18 May 2014 by Paul Hutcheon (@paulhutcheon).

"Government investigation has been launched after nearly 50% of health boards ignored NHS guidance requiring GPs to register their financial interests with the pharmaceutical industry.

Six out of 14 boards, including Greater Glasgow, failed to record if doctors are being paid by drug companies. Civil servants have launched an urgent review of the oversight. Several exposes have revealed the financial links between doctors and Big Pharma.

The industry paid £38.5 million to UK doctors last year, a sum that included consultancy services and fees for attending conferences. But drug companies do not have to name the doctors who benefit until 2016.

Dr Peter Gordon (Herald photo)
Dr Peter Gordon, a consultant psychiatrist at NHS Forth Valley, last year lodged a petition at ­Holyrood calling for legislation to ensure employees declared payments. It then emerged that NHS guidance had been in place for a decade.

The 2003 circular states that, in respect of the pharma industry, boards must establish a register of interest for all NHS employees and primary care contractors. Hospital doctors are classed as NHS staff, while GPs are primary care contractors. The Scottish Government wrote to the 14 regional boards about their compliance with the guidance. The responses reveal big divergences on the section relating to GPs."

Read complete Sunday Herald article

My comment on this article:
"Well done to Dr Peter Gordon for highlighting this important issue, of doctors not declaring their links with drug companies and being transparent about any potential conflicts of interest.

As an unpaid carer of family members who have been forcibly treated with psychiatric drugs and as a survivor myself of mental illness and coercive drug treatment I am keen to know the truth about what is euphemistically called "educational" talks by pharmaceutical companies. I remember being prescribed antipsychotics against my will which then depressed me. Following which I was prescribed venlafaxine, an antidepressant, which further flattened my mood and caused suicidal ideation.

This happened in 2002/4. In March 2005 I broke my fibula in 3 places when only walking down a stair, after a job interview. I got the job and started it after learning to walk again with a 6 inch metal plate in my leg. Recently I found out that maximum doses of venlafaxine, particularly for older people (I was in my 50's) can cause bone loss.

As a mental health activist and campaigner my aim is to help improve choices for people experiencing mental or emotional distress. So that drugs aren't the only tools on offer but a range of talking therapies, intensive if need be, are available at the point of need."

Friday, 16 May 2014

enjoying reading 'Cradling the Chrysalis' and 'I Haven't Had to Go Mad Here' - 2 sides of the same coin?

I recently got a copy of 'Cradling the Chrysalis: teaching/learning psychotherapy' by Mary MacCallum Sullivan (whom I know personally) and Harriet Goldenberg, from Ebay.  And around the same time my son lent me a 1979 paperback copy of Joseph H Berke's 'I Haven't Had to Go Mad Here: The psychotic's journey from dependence to autonomy'.

A feast of reading and much to reflect on.  I don't want to read them too quickly.  For one, I'm savouring the experience, and two, I don't want to miss anything by rushing through.  Although I usually do skim pages or dip into the end bits when getting a book in my hands.  Old habit die hard.  Trying to see the end from the beginning.

Each of the books is an opposite or complementary to the other, in the man/woman sense but also in the pace and content.  However from what I've read so far there are similarities in the stance and getting alongside the mad person.  Level playing fields and human relationships rather than clinical objectivity and them/us.

I want to take notes and do further investigation of the quotes mentioned and the references given.  It should broaden my perspective on the psychotherapeutic approach.  I've had a hankering for learning more about the process and practice since hearing of the postgraduate course in psychodynamic counselling from Mary MacCallum Sullivan, organising tutor, now called the Diploma in Human Relations and Counselling.

I believe that there is a place for the psychodynamic and psychotherapeutic approaches in working with people in altered mind states and psychoses.  I'd like to see the drug "therapies" moving aside to let the talking therapies in to the mix.  

It will require action from health boards and government to create the breathing/talking space.  With agitation from the experts by experience at the grassroots.  So that a redistribution of power is achieved in psychiatric settings.  Nothing about us without us.

my Storify of tweets from Open Dialogue London seminar 3/4 May 2014

Here is a link to my Storify of tweets from Open Dialogue London seminar 3/4 May 2014

"Second weekend seminar at the Round Chapel, Hackney, London, hosted by Nick Putman and involving Jaakko Seikkula, Mia Kurtti and Markku Sutela from the Open Dialogue project, Tornio, Finland."

my father William Patterson
"My tweets from the London Open Dialogue UK seminar 2nd weekend.  I flew down from Edinburgh on the Saturday morning early 3 May and managed to get to Hackney by 10am for the start.  I did some sightseeing on the Saturday evening, getting a bus down to London Bridge then walked along to St Paul's Cathedral, on Sunday morning early also.  When I took another bus from my hotel to Trafalgar Square.  

I enjoy visiting London where my father was a writer with the Daily Express in Fleet St, 1956-1969, scripting Jeff Hawke, a sci-fi comic strip which became very successful.  Sydney Jordan was the illustrator and original creator of the character.  Jordan and my dad were childhood friends in Perth, Scotland, where I and my family lived.  The Jeff Hawke stories that my father wrote were republished by Titan Books, twice, in 1986 the year he died at age 57, and in 2008: in volumes The Ambassadors and Overlord.  


"Widely considered as one of the most important sci-fi comic strips ever published, "Jeff Hawke" is a benchmark in intelligent, adult-oriented storytelling! Jeff Hawke's not your average space-hero; focused on reasoning, diplomacy and moral virtues instead of brute force, he is frequently forced to be the ambassador - rather than the saviour - of mankind!  His universe is populated with alien species that meet humankind by accident or for commerce, but hardly ever for invasion. Patterson's subtle wit makes the strip's plots and characters as fascinating as they are amusing, and Jordan's highly expressive style fully captures the strangeness of the weird and wonderful aliens of Jeff's universe!"  on Amazon UK."

I have decided not to attend the 3rd and final Open Dialogue London seminar at the end of May.  Although there were many interesting and useful parts to the information sessions, the facilitators committed in their openness, I found the overall approach to be more clinical than I'd hoped for.  I'm looking for grassroots, peer led/run movements where survivors and people with "lived experience" are at the helm and at the centre of change.  Experts by experience leading and setting agendas.  That's the way to do it. 

Thursday, 15 May 2014

'Adult ADHD - Amidst the Chaos is a Disorder' conference Dunblane - promoting Strattera - who benefits?

Here is a link to my Pinterest and a poster about a conference that was held yesterday in Dunblane 'Adult ADHD - Amidst the Chaos is a Disorder'.  Sponsored by drug company Lilly, promoting Strattera or atomoxetine, of which "The FDA of the US has issued a black box warning for suicidal behaviour/ideation.".

Speakers included Scottish consultant psychiatrists Dr Prem Shah, NHS Lothian, and Dr David Hayward, NHS Tayside.  [my opinion?  Not sure why these psychiatrists need to be aligning with big pharma and pushing drugs.  Do they not earn enough money in the NHS?]

One of the workshops was called 'It's criminal not to treat ADHD' by a Fran Harland "ADHD coach/trainer", social worker who runs a business Wraparound Services. On the website it mentions "hidden disability".  [My opinion?  It's criminal to be pushing disability so as to make money out of it.]

Then there's a Dr Chris Bushe in the pay of Eli Lilly who says he's "arguably sane".  Whatever, there's no doubt he's making money out of the Big Pharma connection.  It also mentions "schizophrenia" as another of his interests[My opinion?  He who pays the piper calls the tune.]

As a psychiatric survivor and someone who experienced many side effects on antipsychotics and antidepressants I was concerned to read the list of side effects that can occur with atomoxetine, from very common to common.  

Therefore the payoff in accepting an ADHD label (although children don't have this choice) are disabling side effects and thoughts of suicide.  Which is what I experienced when taking antidepressant venlafaxine.  Plus bone loss resulting in a fractured fibula and a 6 inch metal plate in 2005.

Very common (>10% incidence) adverse effects (of atomoxetine) include:

  • Nausea (26%)
  • Xerostomia (dry mouth) (20%)
  • Appetite loss (16%)
  • Insomnia (15%)
  • Fatigue (10%)
  • Headache
  • Cough
Common (1-10% incidence) adverse effects include:
  • Dizziness (8%)
  • Erectile dysfunction (8%)
  • Somnolence (8%)
  • Abdominal pain (7%)
  • Urinary hesitation (6%)
  • Tachycardia (high heart rate) (5-10%)
  • Hypertension (high blood pressure) (5-10%)
  • Irritability (5%)
  • Constipation (8%)
  • Abnormal Dreams (4%)
  • Dyspepsia (4%)
  • Hyperhidrosis (4%)
  • Vomiting (4%)
  • Hot flashes (3%)
  • Paraesthesia (3%)
  • Menstrual disorder (3%)
  • Weight loss (2%)
  • Depression
  • Sinus headache
  • Dermatitis
  • Mood swings
  • Ejaculation disorder (4%)

My opinion of this conference?  It's all about the money.


Wednesday, 14 May 2014

I've been asking psychiatrists I know if they have links with Big Pharma

For a wee while now I've been writing to psychiatrists I know to ask if they have links with pharmaceutical companies, as a consultant or through "educational meetings" and receive payments.  Email subject "declaration of funding, interests and links with pharmaceutical companies".  And I've received a mixture of responses.  

Some have said no links, another said that he was a consultant with Janssen but now isn't.  Another sent back an Email that seemed to be a cut and paste job, quoting her health board area bumph but not really telling me if she did or did not have pharma links.

One psychiatrist has not responded since I first Emailed him on 6 March 2014, followed up by 2 further Emails, all of these copied in to a senior Scottish government mental health division manager, a GMC (General Medical Council) manager, a senior contact with the ABPI (Association of the British Pharmaceutical Industry) and the Chief Executive of NHS Lothian.

This psychiatrist was one of my colleagues on the Scottish Crisis and Acute Care Network Steering Group which I was a member of for over 2 years until the beginning of this year.  I worked with this psychiatrist on a workshop at the network conference last year in Stirling where I presented on 'Pathways and Perspectives – A Tale of Two Cities'.

I'm not sure why this psychiatrist isn't responding to my request regarding any links he might have with drug companies.  NHS Lothian doesn't have a Register of Interests for their health board staff so I can't check up there.  And of other Scottish health boards that do have Registers they don't all have declarations from doctors and psychiatrists eg in NHS Fife.  

Psychiatrists/doctors are public servants, answerable and accountable to the public, is how I see it.  And I'm the public while also having been a colleague of this doctor in question.  Or I saw myself as a colleague and co-worker.  Maybe he didn't see us as equals.  I don't know.  Or maybe his Email isn't working.  

Hopefully this blog post will help oil the wheels of communication.

Tuesday, 13 May 2014

comparing NHS Fife to NHS Forth Valley in terms of Registers of Interest (drug company payments)

I've been checking out the Registers of Interest in NHS Forth Valley compared with those in NHS Fife.  The former is very detailed while the latter tells me very little about hospitality or payments from drug companies to health board staff.  

The Forth Valley Register details the pharma company eg Janssen-Cilag and amounts spent, on sandwich lunches or trips to London or "educational" meetings.  (some psychiatrists seem to have weekly lunches, not sure why)  Whereas the Fife Registers have very few doctors listed on them and the pdf documents have no hyperlinks to them, so the public can't see what's in them.

For example, here is the link to the Kirkcaldy and Levenmouth CHP Register of Hospitality and Interests 2013 where I am told there should be psychiatrists listed (a Fife psychiatrist told me this).  It appears to have only 2 doctors listed with Nil beside their names, neither of them psychiatrists.  What about all the other doctors and psychiatrists in Fife?  Does that mean they have something or nothing to declare?  Who knows, I don't.

I do wonder why government isn't holding doctors and psychiatrists accountable in respect of links with drug companies.  What is the point of having registers if they are not adhered to?  It seems to me, a non-medical person and someone who has been forcibly treated with psychiatric drugs, that doctors and psychiatrists are a law unto themselves. 

HDL 2003 62 is a Scottish Government guidance document "on joint working between NHS Scotland and the Pharmaceutical Industry, which is transparent and improves patient care".  It sets out Action by Health Boards and Trusts: "Chief Executives are asked to establish a register of interest for all NHS employees and Primary Care contractors and produce local standing orders specifying who is responsible for keeping and maintaining the register.".

'Watchdog attacks neglect of elderly hospital patients (Royal Edinburgh)', Tuesday 13 May 2014, Herald Scotland

Herald Scotland article 'Watchdog attacks neglect of elderly hospital patients', Tuesday 13 May 2014, by @HelenPuttick

"A health watchdog has sent a damning report to NHS Lothian about the treatment of patients with dementia symptoms at the Royal Edinburgh Hospital.

It comes just months after figures revealed hospitals were finding it harder to discharge patients. In February, it emerged the number of patients stuck in hospital beds for weeks because of care shortages in the community had risen 165%.

The Mental Welfare Commission document raises concerns that people are spending months on the Royal Edinburgh's wards with little to do there, leaving them in a distressed state, because of the lack of care homes.

Staff shortages and the prescription of powerful sedatives to patients are also highlighted as issues in a covering letter to NHS Lothian chief executive Tim Davison."

"Relatives of Peter O'Malley, of Haymarket, who died at the Morningside hospital, obtained the documents under Freedom of Information legislation. Edinburgh Carers Council, an independent advocacy service, has also written to the hospital's management with its concerns about the wards.

Catherine Thompson, Mr O'Malley's daughter, said: "My father experienced significantly poor care while trapped in that hospital. His clothes were lost and he suffered repeated falls. Other families and vulnerable elderly people should not have to share our experiences. They deserve to be treated with dignity."

'Hospital was the scariest thing I've ever seen' - The daughters' lament:
Mr O'Malley's daughters (Herald photo)

"Mrs Thompson says: "It was his worst fear that one day he would go to hospital and never get out. The hospital was like One Flew Over The Cuckoo's Nest. It was the scariest thing I have ever seen."

She says the family were given no information about what to expect after his admission, and the state of the hospital and lack of activities left their father distressed and despondent. 

Mr O'Malley described counting the leaves on the trees he could see through windows because he was so bored."

[my opinion: yet again it seems the Mental Welfare Commission for Scotland are wise after the event.  It takes family members to highlight the human rights issues of psychiatric patients before the commission does anything]

Monday, 12 May 2014

Speaking up as a Mother

Yesterday was Mother's Day in the United States, an event that originated with the women's peace groups and "as a day recognizing women's social action":

"In the United States, Julia Ward Howe (1819-1910), a Boston writer, pacifist, suffragist, and author of the words to the Battle Hymn of the Republic, first suggested a Mothers' Day in 1872. She saw it as a day dedicated to peace."

In Scotland and the UK we celebrated Mothering Sunday on the 4th Sunday in Lent, 30 March this year, and historically a time when people returned to their "mother church".  

I wanted to write this blog post both in praise of and defence of mothers.  Thinking especially of mothers who have been in and through the psychiatric system as mental patients and mothers who have supported family members in and through that same system, and who may have had to walk the plank or put on a flak jacket for the privilege.  For it's been my experience as a carer of 3 sons with "mental disorder" labels, and as a mother labelled with "schizoaffective disorder", that the patriarchal psychiatric system has a habit of targeting mothers, blaming us in the process.  

Well I'm fed up with the naming, shaming and blaming of mothers and of their offspring.  It's a man's world and it's way beyond time I think that men should share the responsibility for a mucked-up world and for expecting mothers to pick up the pieces.  I've become a feminist in my 60's, better late than never, after a lifetime of being a homemaker and someone who made soup, baked cakes and kept the home fires burning.  I enjoyed the role and embraced the "housewife" mentality while still retaining the freedom to be myself, to keep on learning and to enjoy the adventurous parts of life.  It was my choice and there was no coercion.

It was reading some of Bonnie Burstow's work [Electroshock as a Form of Violence Against Women] that shifted my perspective and brought me into a more feminist frame of mind.  I suppose I was headed that way from childhood when climbing trees, playing "kick the can" with the boys and going about proudly aged 10, in my cowgirl outfit with guns and holster, shooting the "baddies".  I also played with dolls and prams.  I had the best of both worlds and my parents encouraged this.  Looking back I consider myself very fortunate in my parenting and having grandparents nearby who I stayed with when my mother had "nervous breakdowns", disappearing into the mental hospital for spells.

Recently I attended two weekend seminars on Open Dialogue at the Round Chapel, Hackney, London, in March and at the beginning of May.  It was an opportunity to find out more from the Tornio team about their family therapy approach of working with people experiencing psychosis.

"The presentations will cover topics such as the history of the Open Dialogue approach, the structure of the service in Western Lapland and the principles that underlie it, the practice of meeting with (family) networks, the use of medication, working with people experiencing psychosis, the evidence base for the approach, and the roots of the approach (Gregory Bateson, Milan Systemic Therapy, Need-Adapted Treatment, the work of Tom Andersen, social constructionism, and Bakhtin and dialogical theory)."

Three generations of my family have experienced psychoses/altered mind states as a normal occurrence, at times of transition and/or stress.  From my mother to my 3 sons, each of us has had to go in and through the psychiatric system, and be subject to coercive treatment when resistant to psychiatric drug treatment.  We have all received "mental disorder" labels and some of us have been disabled in the process.  As a mother and now grandmother I am very keen to learn about and promote alternative ways of working with people in psychoses.  

In September 2011 I had organised 'At the Sharp Edge', a dialogue event on peer led crisis alternatives, in Fife, Scotland, with a range of speakers, including Ron Coleman, Shery Mead and Fiona Venner (manager of Leeds Survivor Led Crisis Service).   The aim was to have discussions around working with psychosis, trauma, hearing voices, peer led initiatives and crisis alternatives.  I'd hoped that it would help in the development of a crisis alternative in my area of Fife. 

I'd also invited Bob Whitaker to Scotland in November 2011, when he gave a lecture on Anatomy of an Epidemic, in Cupar, Fife, near where I live, introductions at the event made by Prof Phil Barker and a vote of thanks by his wife Poppy Buchanan-Barker, architects of the Tidal Model of recovery, a mental health nursing approach.   

However by the end of 2011 my youngest son required crisis support which wasn't forthcoming at the point of need, despite his having a community psychiatric nurse.  This resulted in traumatic psychiatric inpatient treatment and my advocacy support of him in the clinical setting.  You might describe it as ironic that what happened to my son highlighted the inadequacies of the coercive, drug treatment approach.  In January Bob had asked me to be a writer on Mad in America, my first post was published on 29 January 2012, Navigating the System.  Then on 1 February my son ended up in a locked psychiatric ward, with injuries and so began our fight for justice and for our voices to be heard.  Writing on MIA helped me as a mother to have a voice and also for my son to be heard through my advocating for him.  It helped us to take back some of the power in the midst of our disempowerment.

Getting back to the London Open Dialogue (OD) seminars which were mostly attended by "professionals" from many NHS health board trusts in England, although there were some of us there identifying as psychiatric survivors.  I'd flown down from Edinburgh, Scotland, to attend the seminars, staying overnight in London, paid it for myself, a reduced rate price for unwaged.  After the first weekend I had some concerns about the seminar programme and the OD approach although I wasn't sure exactly what it was that bothered me.  I remember Emailing colleagues about it in the March, mentioning the sales pitch, also how on one hand it was about "hearing every voice" but on the other, at the small group discussions, it seemed that some voices weren't welcome.  I decided to attend the second weekend, of three, to find out more.

On the first day of the second May OD weekend there was a dialogue about a mother and son from the stage.  Markku Sutela, Mia Kurtti and Jaakko Seikkula were facilitating.  Something was said about the son being put on more medication because of the mother being anxious.  A question from the hall asked why not put the mother on medication/drugs.  I said that she probably already was on them.  Markku said he didn't think so.  He'd also mentioned being annoyed at the mother.  I tweeted what did the mother think of him.  Because it seemed that we were only hearing the "professionals" side of the story and not that of the mother and son.  When at the first OD weekend we kept hearing how nothing was said or written about the family without their being there or hearing it or suchlike.

Here are some tweets from the 2nd Open Dialogue weekend:

It felt at the second Open Dialogue seminar that the "blaming of mothers" reared its head.  Maybe because of the mother/son story being told from the third person perspective and personally, as a mother, and my mother before me, that we've been targeted by psychiatry as in "family history of", "difficult and demanding mother".  As if the psychiatric system has to dominate us and put us in our place, under the authority of men.  I've never been keen on being forced or made to conform if it doesn't make sense, if the teacher is boring or if there is institutionalised thinking.  The Open Dialogue language seemed medical and clinical, more aligned to systems thinking even though demonstrating level playing fields in their philosophy and approach.

I suppose I'm looking for radical thinking and paradigm shifts.  Like that of Scottish psychiatrist and visionary RD Laing, of whom Phil Barker and Poppy Buchanan-Barker conclude in their piece 'The caring focus of RD Laing' 2001:

"Ultimately, however, Laing could not sustain the wild trajectory of his own personal growth. The caring emphasis of his work – often focused on severely disturbed women – suggests that he had spent his professional life trying to rehabilitate, metaphorically, the mother who had treated him with such callous, if not pathological, disregard. Finally the pins that his mother inserted in that voodoo doll found their spot and the light went out on young Ronald. Fortunately, his ideas have inspired a succession of voices, eager to develop his alternative vision of humanitarian psychiatry. The Laingian legacy remains in light."

Sunday, 11 May 2014

'Breaking from Your Parents' book by Daniel Mackler and remembering mothers

It's Mothering Sunday today in the US and I'd noticed on Facebook the latest book by Daniel Mackler being promoted by a "friend": 'Breaking from Your Parents'.  

"'Breaking from Your Parents' explores such topics as confronting parents, dealing with siblings, becoming financially independent, doing self-therapy to strengthen ourselves, grieving our losses, dealing with the world’s judgments and negative pressures, healing our childhood traumas, making respectful friends and living a healthy lifestyle. The book is direct, straightforward and supportive—and takes the point of view that there can be great value for us all in our taking distance from our parents."  

My immediate reaction to this title wasn't positive, I've got to admit it, I felt resistance.  For family are everything to me, always have been since I was a bairn.  And being a mother has been the best thing ever in my life, next to my Christian faith.

I know that the reality for some, and maybe many, people is that they have no other option but to separate from family completely so as to heal and have quality of life.  I'm thinking of people who may have been scapegoated in a family, blamed for this and that, singled out for shame or for not being like everyone else in the "gang".  

I think it's good that Daniel has written this book as a help and support for people who have to break from their parents to have a life.  To stop the scapegoating or shaming so as to survive.  But at the same time I want to see more support for families to sort themselves out.  Not a blaming of mothers or fathers but for a healing process so that families can stay together and work things out, if possible.

On this day which remembers mothers I want to remember my mother, my father's mother and my mother-in-law, all women who did their best and who were role models for me as a mother.  It's hard these days to be a mother with all the pressures of life in a patriarchal society where the expectations on women are immense and at the same time the objectification of women is everywhere present and insidious.

I hope that for anyone who has to break with their parents to survive and thrive that there is also a way back in to having a better relationship with their mother and father.  For healing and forgiveness.  

I remember my mother's end of life and the precious months I spent with her before her passing, from lung cancer.  She had a good death and was at peace.  We had a church service after around the theme that she did the best she could.  We sang the hymn 'Great is They Faithfulness' and thanked God for my mother's life.

my granny and grandpa (father's parents), 1960's photo
me with my mum and dad, 1953
my mother-in-law circa 1976

(reblogged) Critical psychiatry: Still depressed even though treated for bipolar

Critical psychiatry: Still depressed even though treated for bipolar

"I've commented before on the expansion in the diagnosis of bipolar II disorder (eg. see previous post). Reading Nassir Ghaemi's forward to Jim Phelps' book, Why am I still depressed?, indicates that at least part of the motivation for this development was to "move away from simple-minded diagnoses and prescriptions about depression". The necessity for this was because antidepressants are not "the panacea that many once thought". However, are the benefits and limits of so-called mood-stabilisers any different from antidepressants (eg. see another previous post)? And is the concept of bipolar II disorder valid or merely motivated by wishful fantasy?

And once the concept of bipolar disorder II has been accepted, then the notion is that antidepressants may actually make the disorder worse by increasing the risk of (hypo)mania. Better stick with just mood stabilisers in the treatment of bipolar II disorder. But is manic switch more theoretical than what actually happens in practice, particularly in bipolar patients compared to unipolar? The evidence, for what it's worth, is that the switch risk has been overinterpreted. Keep quiet about this so the myth of bipolar II disorder can be perpetuated."

Friday, 9 May 2014

NHS Lothian still does not maintain a Register of Interests for all employees - why not?

I made an FOI request to NHS Lothian on 30 April 2014, asking if there was now a Register of Interest for all employees, in particular to find out if any psychiatrists in this health board area, where our Scottish Parliament sits, receive payments from drug companies.  

Answer: No Register of Interest for all employees.  Eleven years after Health Boards were all asked to do so.  In the interests of transparency and improved patient care.  Therefore the public, patients and carers have no access to information about doctors who may be receiving payments from pharmaceutical companies, as consultants or other remunerated posts.

HDL 2003 62 is a Scottish Government guidance document "on joint working between NHS Scotland and the Pharmaceutical Industry, which is transparent and improves patient care".  It sets out Action by Health Boards and Trusts: "Chief Executives are asked to establish a register of interest for all NHS employees and Primary Care contractors and produce local standing orders specifying who is responsible for keeping and maintaining the register.". 

Here is my request:

"I am writing to you to ask for information about declarations from doctors in NHS Lothian, regarding their links with and monies received from drug (pharmaceutical) companies.

I know that NHS Circular HDL (2003) 62 makes it clear that all health boards should establish a register of interests for all NHS employees and primary care contractors.  I have read in the Hole Ousia blog post, from a letter dated 6 July 2013 written by Alan Boyter, that there are no centrally held registers in NHS Lothian, apart from board members;

I would like to know if the position has changed in NHS Lothian in the 9 months since.  Recently there have been a number of media articles and TV programmes highlighting the payment of doctors by pharma and the conflicts of interests that arise.  I want to know if NHS Lothian are now complying with HDL 2003 62 and with the NHS Circular MEL (1994) 48 Standards of Business Conduct For NHS Staff.  This 20 year old standard mentions staff declaring "relevant interests".  A prescribing doctor linked to a drug company by way of payment I contend has to be transparent.  For after all drug companies are about creating customers not cures."

Response received today:

"I must advise that information in relation to NHS Lothian’s Register of Interest for Board Members and the Gift and Hospitality Register is available via the following link:

There are no other centrally held registers available within NHS Lothian and any such register would not necessarily identify payments to staff.  Normal practice would be to declare the interest, not the financial amount.  If someone received payments through secondary employment, we would not have that information.  Ideally any transactions should be on a firm footing directly between the Board and the company.  The appropriateness of the relationship should be considered before it is pursued.

.... we do not maintain a standing register of interests for all employees.  Employees are meant to declare relevant interests as and when required, and then it will be recorded and considered accordingly within the personnel record.  The position has not changed in the last nine months." (bolding is mine)

Here is link to the NHS Lothian FOI Response Letter dated 6 May 2014.