Wednesday, 31 December 2014

design of new £3m (£4.4m) IPCU at Stratheden Hospital - what about the £1.4m? Are any experts by experience involved? Update

[Update to original blog post about new-build IPCU]

from Fife Herald 26 December 2014
Email response to my questions about £1.4m and patient/carer involvement in design plans, from Dr Brian Montgomery, Interim Chief Executive, NHS Fife, on 30 December 2014, my responding Email follows:

"Dear Mrs Muirhead

Thank you for your enquiry.

The total funding associated with the IPCU has not changed and remains at £4.4 million,  However there is more than one element to it and it is also being phased over more than one financial year.

I can confirm that service users including patients in IPCU and the low secure unit were involved in the early stages of the design.  The Board has now enlisted the assistance of Circle network to identify previous service users to work with us on the next stage.

Artist drawings were on display in the staff dining room for a period of time.  More detailed floor plans have been drawn up and will be considered when the Project Board meets in January.

Once the business case is approved there will be public engagement sessions.

Brian Montgomery"

My response in an Email, this morning, 31 December 2014:

Subject line: Re: what about the other £1.4million? I am still none the wiser. Staff centred services, no surprise there then. Hierarchical shenanigans and uncivil servants.

"Dear Dr Montgomery

Thanks for your response re the £1.4m enquiry and the question about meaningful involvement of experts by experience in the new build IPCU designs.

I am still none the wiser, regarding the £1.4million and what it is to be used for.  "more than one element" and "phased over more than one financial year" doesn't tell me, or any other non-NHS Fife health board folk, what is happening.  I would have appreciated some detail rather than what appears to be a fobbing-off reply.  As if you and the board are not going to tell a carer, activist and campaigner in Fife what is really going on. 

It's disappointing but not surprising.  I've sat through a number of health board meetings now and know the score.  Graphs and statistics that do their best to obscure the facts except when a point is being made.  Handpicked patient stories to praise services or government/parliament initiatives.

As for the "involvement" of patients and carers, I see none of the latter and the former doesn't appear to be either meaningful or rigorous in its execution.  As usual it's staff at the centre. getting the drawings on display for "a period of time".  Staff-centred services at Stratheden Hospital, what I have been used to, over the years since 1995/6 when my oldest son was an inpatient of Lomond Ward, was injured, had a critical incident with ECT, rushed to Ninewells, and I had to make complaints.  What's new?

"public engagement sessions" are not the same as consultations (mind you, to be honest, the government consultations haven't been the best use of my time, the civil/uncivil servants just write their own stuff anyway).  It sounds like asking for approval after the gate has shut, the horse has bolted.  Please do correct me if I'm wrong?  I speak as a community development worker of over 30 years. 

Where I was involved in setting up grassroots community projects (not mental health specific), involving stakeholders from the offset, empowering individuals and being empowered.  Working in partnership with statutory agencies, in South Lanarkshire, throughout the 1980's.  But things were different on coming to NE Fife in 1990.  It has to be said.  Like stepping back in time.  Since 1990 I've worked in paid posts (not mental health specific) in Fife and in Perth, the latter was more like the Lanarkshire experience.  More level playing fields and multi-disciplinary working. 

However since 2008 and setting up Peer Support Fife it soon became very clear to me that Fife mental health services were a top-down affair with little if any meaningful involvement of the real experts by experience.  The national situation wasn't and isn't that much better.  Hierarchical shenanigans, tokenistic involvement and cronyism abounding.  You can only climb the ladder of success if you tell them what they want to hear and keep quiet about your real opinions.  Otherwise exclusion.

I will put your response and mine into a blog post for others to see, 

Yours sincerely"


13 December 2014
I just came upon this information about the new IPCU planned for Stratheden Hospital, by chance when searching the internet:

"NHS Fife - Stratheden IPCU, Cupar

As part of the Graham Construction PSCP team under the HFS Framework Scotland 2 we are undertaking the design of a new £3m Intensive Psychiatric Care Unit for NHS Fife at Stratheden Hospital in Cupar. Construction works are scheduled to start on site in early Spring 2015."

So I have sent an Email to the NHS Fife Chief Executive Dr Brian Montgomery, saying:

"Can you please let me know where I can view the plans for this development?  I would like to be informed, particularly considering my activism in this area.  I am sure that others will also be interested.

I would like to know if any patients, carers, service users, people with experience of psychiatric settings from the customer perspective, have been involved in the design and planning process?  I haven't heard anything on the grapevine or from colleagues. 

I do hope that people like me are having a say from the beginning.  That our voices and experience are being recognised and respected.  I think it makes sense to invite us in rather than have us only spectating on the sidelines.  After all, we are the ones who may be having to engage with the service, support our family members who may find themselves detained in the IPCU.

I will put this link on my Stratheden Hospital blog in the expectation of hearing more from you .."

[the original amount promised by Scottish Government was reported as £4.4million so I have sent another Email asking "what about the other £1.4m?", what is it being used for?  Eg Lomond Ward which is in need of restructuring, internally, so that female patients are not sleeping in dormitory accommodation overlooked by male patients in single rooms down the same corridor.]

Tuesday, 30 December 2014

"unnecessary and groundless interventions" @dchristmas

[Part 2: Dr Christmas MD Thesis

1.1 Overview:

I agree with this statement, in terms of there being no good reason to persist with brain surgery for mental illness because the drug treatment hasn't worked.  However the expressions "huge burden" and "driving force" I think reveal the almost messianic nature of neurosurgical manoeuvres.  As if powering ahead and saving lives.  

The phrase "treatment-refractory psychiatric illness" is like a double whammy to a person who has been hindered and not helped by psychiatric engagement.  First do no harm.  

Unfortunately it has been my experience of over 40 years engagement that a lot of harm has been done to my family, in the name of psychiatry.  Eight of us, that I know of, through 3 generations, from the 1950's until now.  From the advent of the antipsychotics to the polypharmacy of the present day.

You might say that we were "fortunate" not to be "treatment-resistant" although most, if not all, of us resisted the treatment at the first hurdle and were forcibly drugged until we complied.  The major challenge was to escape the labels, the drugs, the stigma and the discrimination of "mental illness".  Which I managed on 3 separate occasions.  Disappearing back into the normal world of mad people.

Some of us stayed in the system, taking the drugs and putting up with the disabling side effects.  Those of us who weren't overly depressed by the chemicals in our brains.  However I got clinically depressed with the antipsychotic and had no choice but to resist then get off the drug as soon as I could.  It got more difficult with the antidepressant era, Venlafaxine giving me suicidal ideation and bone loss.

But I broke free despite an eventual leg break and the scars to show for it.  I don't walk with a stick as my balance is OK, having got off all the psych drugs, although I did lose some sight in one eye due to a burst blood vessel, very glad it wasn't my "good" eye.  Another likely side effect of Venlafaxine which didn't lift my mood and probably raised my blood pressure, to boot.

I do wonder if I hadn't been an unbeliever in mental illness and hadn't tapered the psychiatric drugs myself, getting off them all under my own steam, resisting the lifelong labels, would I be a contender for NMD?  If I was desperate, depressed, no hope of recovery, told that I had treatment-refractory psychiatric illness, would I have looked for the solution in my brain?

Sunday, 28 December 2014

Robert Whitaker & Peter Gøtzsche, Copenhagen May 2014, PsychoVision Conference: Anatomy of an Epidemic

"Published on May 23, 2014
The Psychiatric Epidemic - does long-term use of medication decrease the chance of recovery?

PsykoVision in Denmark has recently translated and published Robert Whitaker's book, "Anatomy of an Epidemic". In honor of this, PsykoVison has invited Whitaker to speak at a small conference in Copenhagen.

This is Part 1: The Roots of the Epidemic, where Robert Whitaker guides us through the history of psychiatric medication and presents the scientific evidence that proves that the common wisdom about theses drugs is mostly based on falsehoods."

"Published on May 31, 2014
Robert Whitaker, author of "Anatomy of an Epidemic" is speaking here at PsykoVision's conference on the Psychiatric Epidemic in Copenhagen.

In Part 2, Whitaker digs down deep into the research pertaining to psychiatric medication and demonstrates quite clearly that the studies paint a very different picture that the prevalent common wisdom of our day.

What is the reason for this discrepancy? Misinformation? Disinformation?

"Published on Jun 10, 2014
Dr. Peter C. Gøtzsche is the head of the Nordic Cochrane Center. His book, "Deadly Medicines and Organised Crime" was published last year. Peter is speaking here at PsykoVision's conference on The Psychiatric Epidemic in Copenhagen."

"Published on Jun 14, 2014
Here, Robert Whitaker looks at the research that specifically deals with Children - especially ADHD but also so-called Bipolar Disorder. The evidence is clear: the ethics behind the use of these toxic medications on children is highly questionable."

Tuesday, 23 December 2014

Hearing Voices Network Dundee video: The meaning of Christmas... @HaVeN_Dundee

Published on Dec 23, 2014
Thoughts and feelings about Christmas from some of those who participate in the Voices Seen project at he Hearing Voices Network in Dundee (Facebook page)

Monday, 22 December 2014

Reblog: @PeterDLROW 'A little tearful (and McCall Smith)' Hole Ousia

Peter J Gordon Hole Ousia blog post:  'A little tearful (and McCall Smith)':

I was left a little tearful after Alexander McCall Smith contacted me this year to say that he was an admirer of my short films.


Why might I have been left a little tearful?

Well of course it is wonderful to be appreciated by an Internationally renowned writer like McCall Smith.

We also share family experience in Africa.

But my tearfulness, and here I can only explain what I feel, was my appreciation that McCall Smith portrays in his writings, that moments of being really do matter.

Alexander McCall Smith had a career in bio-ethics.

Some time ago I made a film about the varied responses to my short films. This followed a formal letter, from NHS Forth Valley expressing “concerns” about my “films”. It later came to light that the senior manager who wrote to me expressing concerns about my films had not watched a single film made by me!

More recently, the Executive Clinical Director of Healthcare Improvement Scotland, wrote to my  former employers, that “this individual resorts to making films”.

Make of this as you will. I am interested in responses from those that have actually watched my films.

Responses from omphalos 

Maura O'Connell performs 'It Don't Bring You' on Transatlantic Sessions

Maura O'Connell performs 'It Don't Bring You' on Transatlantic Sessions, BBC Four, 14 October 2013:

Saturday, 20 December 2014

my experiences of OT in Stratheden, Fife, compared to Carseview, Dundee, and in the communities

"STRICTLY STAFF ONLY PLEASE" toilet Ceres Centre, Stratheden Hospital (taken Dec12)

I remember meeting with the head of OT for mental health (AHP Clinical Services Manager) in Stratheden Hospital, Ceres Centre (patients' cafe here), where she was based, late 2010 think it was.  I was unhappy about the lack of OT group activities in Lomond Ward when my son was a patient that summer.  I'd also asked for a meeting with the head of psychology (Head of Service, Clinical Psychology), for the same reason.  

I had witnessed there being no therapeutic activities in the wards for patients who were detained or restricted and thought this was detrimental to recovery and to the wellbeing of patients.  I'd noticed patients pacing in the wards, up and down, and going round in circles even.  Nothing to do.  Aimless and restless due to the medication/drugs. 

As a community education worker group work was central to what we did to empower and encourage learning in communities, of children, young people and adults.  From 1980 I'd been involved in grassroots initiatives, being part of groups, helping set them up and also leading from the front.  In 1998 I gained a postgraduate qualification to back up my work experience.

Therefore when I met with the OT head it was from a knowledge that groupwork was of real benefit.  However during the meeting of 2 hours and more I met with resistance from the offset.  There was no shifting her stance.  My words fell on deaf ears.  

In February 2012 my son became an inpatient of the Stratheden IPCU where the ward situation was dire.  An activity room locked for long periods, only getting pens to write with if two nurses were available to oversee.  Where were the OTs?  I saw one of them at the clinical meeting on occasion but never saw any working with patients. 

Then in late December 2012 another son of mine became an inpatient of the Carseview IPCU, then the open ward and eventually into the community, using day services.  I witnessed OT groupwork in a variety of situations, in the wards and in the community.  This is what I'd been looking for in Stratheden but didn't find.

In the Carseview IPCU there was an art group held regularly by an OT and I noticed this happening on one occasion when visiting, my son being part of the activity.  I saw the conversations and sharing of information, relationships formed and the art work was a bonus.  

There was a greenhouse out in the Carseview IPCU patio where a volunteer, a retired gentleman, planted out seedlings and patients occasionally helped while others smoked and observed from a distance.  Once a patient was allowed out of the ward they could join a horticultural group in the building, and my son did this although not a gardener in "real" life.  The main benefit to him and others, so I heard, was the human interaction.

The OTs were involved in helping patients to budget, to plan meals, to prepare for discharge, and sometimes went on buses down town with them so as to help build confidence and/or to find out information.  The engagement with patients and planning of activities was done in the ward.  

Unlike in Stratheden where appointments were made in the ward, to go to the Ceres Centre, and often the patients didn't turn up on the day because they didn't feel like it or weren't well enough.  I witnessed this happening and thought it wasn't a good use of time.  On occasion I tried to contact OTs at Stratheden but when I phoned the OT office was told that there was no diary for OTs so no-one appeared to know where any of them were.  Nice job if you can get it was my thought.  A service run for the staff.

My son has been using the Dundonald Centre services in Dundee since discharge from Carseview where there are a range of activities going on, by OTs and nurses who work together therapeutically with the people who use services.  Again there are volunteers involved in leading eg a weekly art group in the Centre.  The programme is flexible and adaptable.  Service users are able to join groups, to play pool, to get themselves a tea or coffee.  I've visited on occasion and the atmosphere is non-clinical even although nurse managed.

It hasn't been like this in Stratheden or in Weston Day Hospital, the latter of which lost the OT input a number of years back.  Not sure why.  It seemed that the OT strategy in NE Fife was to withdraw from involvement in clinical settings and to concentrate more on one-to-one work with patients, occasional groups in the community and management tasks.  This has been detrimental to patients and service users.

However it's been my experience that in Fife psychiatric services any negative or critical feedback from carers, patients or service users is met with defensive attacks and a refusal to engage further.  They do not listen to the voices of experience and have been allowed to do what they like in and with their service, and not be accountable.  Great job if you can get it.

This is what was going on in the Stratheden IPCU in February 2012, I contend.  They had been getting away with it for years.  Using a locked seclusion room with no toilet or drinking water.  Leaving patients locked in for hours at a time, unobserved.  Locking other rooms in the ward, not allowing patients in to their bedrooms through the day so they had to lie down wherever they could find a space eg the corridor in my son's case.

I believe that the OTs were taken out of the Stratheden wards because of the dire state of affairs going on there.  Abandon ship.  Rather than stay onboard and try to sort out the problem, repair the holes, get everything shipshape.  Leaving the patients to suffer for it.  And the carers.  Well it's just not good enough, in my opinion. 

The failures in the wards at Stratheden Hospital are the responsibility of all the staff working there.  It's a corporate affair and you can't just turn a blind eye to human rights abuses, saying it's nothing to do with me.  Yes it is if you're on the payroll.  If patients are not being allowed pens to write with in the Stratheden IPCU, no freedom of expression, then the OTs and others who attend clinical meetings in the IPCU are witnesses and involved.

I will be sending this blog post, as usual, to the senior mental health managers employed by NHS Fife and based at Stratheden Hospital and to the heads of OT and clinical psychology, for their information.  If I receive any responses I will publish them.  So far I have had no response.  I would prefer a dialogue or a debate but I have no power to make this happen.

Friday, 19 December 2014

my comments on #SRN article 'Stigma, recovery and Scottish attitudes to mental health' 15 Dec14

SRN image
Here are comments I've just submitted to a Scottish Recovery Network (SRN) article 'Stigma, recovery and Scottish attitudes to mental health' 15 December 2014:

"As an unpaid carer and mother of two sons with mental health difficulties who are in receipt of DLA I can testify that stigma and discrimination is very much alive and kicking in Scotland, particularly in psychiatric settings and mental health services.

Here is an example of a recent incident that happened to one of my sons who was given a work placement by a council employability project worker, within a social work office.  On the second week of the placement my son was spotted by a Mental Health Officer who had worked with my son 18 months previously, hadn't seen him in the meantime.

Outcome? The MHO spoke with the senior social worker overseeing the placement, and didn't include my son in the discussion.  His workplace activities got curtailed, in case he overheard the MHO on the phone and breached confidentiality.  Which is what the MHO did by her very actions, demonstrating perfectly by her actions stigma and discrimination.  Our response?  My son ended the placement and I raised a complaint."

"To add.  I have a schizoaffective disorder label/diagnosis in my "notes" after experiencing a menopausal psychosis in 2002, however I made a full recovery by 2005, putting my story on the SRN website.

However in 2012 when one of my sons was a psychiatric inpatient it was written in his notes "family history of schizoaffective disorder" (me).  I contend my label was used to stigmatise and discriminate against my son, in respect of his unreasonable treatment, my complaint recently upheld by the Ombudsman."

'How neurosurgery works' from @MindCharity website - "on the frontal lobes of your brain"

"How neurosurgery works

There are three possible techniques used in neurosurgery, but all of the procedures are carried out on the frontal lobes of your brain, which are behind your forehead. This area contains the limbic system, which is concerned with your emotional responses such as rage, fear and joy, and ‘unconscious’ physical responses, such as changes in heart rate and blood pressure.

The aim of each procedure is to disrupt connections between nerves in very small areas of the limbic system that seem to be creating or contributing to persistent depression or obsessive thinking.

What does the procedure involve?

You are given a general anaesthetic. A specially constructed apparatus called a stereotactic frame is attached to your skull to hold the surgical tools firmly in position, so that the surgery can be very exact. The frame is attached through tiny cuts in your scalp, using skin folds wherever possible. Your hair is shaved only in these small areas.

A small hole (called a burr hole), is made in your skull using a special drill, and then a fine probe is put through this hole. Computer software is used alongside imaging, such as magnetic resonance imaging (MRI), to guide the probe precisely to the target spot within the brain (to an accuracy of one millimetre). When the probe is in the right place, an electrical current is passed through it. This generates heat to destroy a very small area of brain tissue at the end of the probe. The probe and the frame are then removed, and the cuts in the scalp are stitched and/or glued.

Neurosurgery for mental disorder (NMD) usually takes about one and a half hours, most of which is taken up by scans to monitor the position of the probe.

There is no international agreement on the best target site for the probe, and different techniques are used at different treatment centres. The following operations are used in the UK: 

Subcaudate tractotomy  
Two probes are inserted via burr holes made in your forehead, and guided to a part of your brain called the caudate nucleus. A very small part of this target area is then destroyed using an electrical current as described above. 

Bilateral anterior capsulotomy  
Two probes are passed via incisions on each side of the midline on top of your head into your part of the brain called the internal capsule, which is close to the caudate nucleus. The target area is then destroyed using an electrical current as described above. 

Bilateral anterior cingulotomy  
This procedure involves a similar technique to capsulotomy, but targets an area of your brain called the anterior cingulate gyrus. 

Two days after the operation you should be able to sit out of bed; on the third day, you should be able to start moving about. Rehabilitation must be gradual, because recovery is a slow process."

[Dundee Advanced Interventions Service uses Anterior Cingulotomy

 "photo of 'Normalised' T1 MRI Scan showing targets for Anterior Cingulotomy"]   


Thursday, 18 December 2014

Christmas thesis strapline: "Functional neurosurgery for intractable mental disorder"

I have recently been engaging on Twitter and by Email with Dr David MB Christmas, Consultant Psychiatrist at the Advanced Interventions Service (formerly the NMD service), NHS Tayside, regarding his 2006 MD thesis 'Functional neurosurgery for intractable mental disorder: long term effects on mental health, neuropsychological performance, social function and quality of life'.  

Here is a screenshot of Dr Christmas (I haven't personally had a meeting with the doctor although I have asked for it) from the RCPsych CPD Online page module 'Neurosurgery and neuromodulation for mental disorder':

I am a critical voice against neurosurgery for mental disorder and believe it should not be a considered option for treatment of people for whom the drugs don't work, the ECT doesn't work and who are desperately seeking relief from mental distress.

I'm not clinically trained and don't have a medical qualification, however I do have nearly 50 years experience of working with family members in mental distress, on an occasional and at times regular basis.  Eight of my family over 3 generations have engaged with psychiatry, all of us forcibly medicated and some of us subject to ECT.  These are my credentials.

This is the first of what I intend to be a series of blog posts about Dr Christmas's 471 page Thesis.  I am not sure how it will pan out but I hope to work through the document and discuss points that stand out for me.  I will also publish any responses from Dr Christmas if they transpire, with his permission.  I would prefer a dialogue or debate.

I will try and resist emotional language when writing about the topic of NMD or brain surgery for mental illness, as I describe it.  It won't be easy as my gut feeling about the procedure is that it's wrong on every level.  However I want to explore this and to argue why I am justified in feeling this.  

The strapline of the doctor's thesis I didn't like from the offset.  The use of the words "functional" in respect of NMD and "intractable" linked to the term "mental disorder".  For NMD, or anterior cingulotomy as performed at DAIS, is a procedure using an electrical current through a probe to destroy brain tissue:

"There is no international agreement on the best target site for the probe" MIND website

The term "mental disorder" is used in mental health acts, in my opinion, to justify compulsory treatment.  I was given a (schizo) disorder label in 2002, it still sits in my notes even although I have made a full recovery.  I contend because it wasn't either accurate or true.  It was used to justify the cocktail of drugs I was prescribed which depressed me, gave me suicidal impulse, bone loss, high blood pressure, panic attacks, restlessness and eventually 3 fractures on my fibula when walking down a stair at a job interview.

The psychoses I experienced, after childbirth and at the menopause, had their roots in trauma and life transitions.  They weren't to do with brain cells but were influenced by external situations and internal responses.  The psychiatric drugs exacerbated the situation and caused further health issues. 
More anon.

[it's my grandchildren's Christmas service this morning in Dundee so I'm away to get ready for the off!]


Wednesday, 17 December 2014

'Imbalance of power between patients and doctors: the price of ignoring the shadow' Christian Koeck BMJ


Christian Koeck, professor

Published 15 December 2014;  BMJ 2014;349:g7485 

The price of ignoring the shadow 

"The human capacity to understand the world is truly astonishing. What began with a taste of the fruit from the “tree of good and evil,” has developed into our unlimited capacity to separate, differentiate, define, and analyse. Consequently, the natural sciences have handed humanity previously unimaginable powers to control and shape the world. In the words of Susan Sontag, we have expanded the boundaries of the kingdom of the well and gained control of significant parts of the kingdom of the sick.1

To make this possible, society has provided vast resources to the medical sector and given physicians powers no other profession has: to open the human body, to prescribe potentially lethal substances, and to cut, pierce, and replace organs and body parts. With great powers come great responsibilities and fears. In the “Role of fear in overdiagnosis and overtreatment,” Iona Heath eloquently described the everyday inner conflicts of patients and doctors.2  I want to build on her analysis by exploring the interactions between society and medicine and between patient and doctor.

Analytical psychology teaches us that any need or feeling is balanced by a complementary quality. Early in life we learn that some behaviours are rewarded and make us successful while others are punished or provide no benefits. We develop behaviours that are related to success and suppress those that aren’t. Suppressed feelings become hidden in the unconscious, what jungian analysts call “the shadow.”3

Our ability to separate, define, and categorise underpins our scientific advances. But to survive as human beings we also need to connect and relate. While our scientific abilities make us powerful, our human needs (their shadow) limit our freedom and make us dependent. The complementary feelings to power and control are helplessness and weakness. 

Sickness and the inevitability of death trigger fears of loss of control and power. To cope with that fear, modern society has colluded with modern medicine to promise that disease can be defeated and death postponed, if not avoided. The same applies to the relationship between patient and doctor. Patients yield up power to physicians because one has knowledge and the other is apparently ignorant. Doctors decide and patients follow. Consequently, the patient-doctor interaction is unbalanced, encounters are short, and communication is replaced by diagnostic intervention. The information patients could provide is ignored, devalued, and not used in the search for treatments appropriate to that patient.

Although treatment decisions should be reached co-creatively between experts (one in medical knowledge, the other in the needs and desires of the specific person), communication often runs only from provider to patient. As a result, the disease is isolated from the patient. Separating and categorising are useful skills when analysing problems, but they are not enough when searching for the right treatment for individuals. Relatedness, empathy, and an understanding of co-dependency are necessary for this.

Both sides pay a high price for this unbalanced interaction. Patients often do not receive optimal treatment because their knowledge is never used and their needs and abilities have never been fully understood. Disconnected from their disease and care process, they may be unable to follow the treatment and are consequently labeled non-compliant.

In their turn, doctors feel overwhelmed and suffer from depression, substance misuse, and the highest rates of suicide among the academic professions.4 5 6  From a psychoanalytical perspective, this is unsurprising. Tremendous powers are being given both to the profession as a whole and to individual doctors. But with the power comes the shadow—the complementary fear of failure and feelings of loneliness, isolation, and being overwhelmed.

It is right to be impressed by what medicine can achieve, to feel soothed and calmed by its power to heal and to reduce suffering. The danger arises, however, when doctors let patients, desperate to suppress their fear of suffering and death, seduce them into taking on responsibilities they cannot bear and powers they cannot handle.

It separates patients from their care and leaves doctors in danger of isolation, exhaustion, and unbearable fears of failure. Instead patients need to be handed back the responsibility for their own bodies and diseases. Doctors can provide only help, not salvation.

Healthcare professionals need to recognise their limits and truly accept that disease and death are part of the human condition. They need to understand that successful provider-patient interaction is a co-creative process, involving two experts, interacting on the same level of hierarchy but with different skills. And they need to resist the grandiose expectation that no human can fulfill: the power to defeat suffering and death."


my comment on today's @Ayrshirehealth post - iPledge by @dtbarron #makeadifference

my comment on today's @Ayrshirehealth post - iPledge by @dtbarron #makeadifference:

"I am pleased to see that Tommy is making a difference and that his past career of being a tour promoter is helping with this.

Regarding your comment Derek: "not by shouting and protesting, tying himself to railings" I have to come in here and say that sometimes it requires active resistance for cultures to shift and radically change.  I am thinking of suffragettes and civil rights movements, without which the world would be a poorer place, in my opinion.

As an unpaid carer I support two sons who are disabled because of mental health difficulties, one of whom lives with me.  I get £61/week for the privilege.  I also voluntarily write and campaign for improvements to mental health and psychiatric services, and sometimes this does involve a protest, speaking out, although up to this point I haven't had to tie myself to railings.  But I would be prepared to if it made a difference."

See blog post 'London demo 29 November 2012: 'bringing in the heavies at the perinatal psychiatry conference' with SOAP'.  Photos from protest, taken by Cheryl Prax:

Saturday, 13 December 2014

"let me finish" he kept saying but it was me who was there to be heard: counsel for the defence

The other day I was at a meeting in Cupar, the final stage of a complaints process which I had raised against the CEO of a national mental health carer organisation because of letters written by her, about me, sent to my home address.  I contend an invasion of privacy and a data protection issue.

My complaint therefore was twofold: I did not give permission for the CEO to use my home address for sending letters and secondly the tone of language and words used towards me in the letters I contend was patronising, belittling and derogatory, inappropriate for someone heading up a national carer organisation.

I had to negotiate a meeting in my local area because at first they wanted me to travel down to Edinburgh, 40 plus miles, to be heard.  But I wasn't having it.  I was the one who raised the complaint, an unpaid carer.  It was their responsibility to accommodate me.

A couple of days prior to the meeting I was told that only one person from the Board would be attending with a note taker.  I took a digital recorder so as to have my own record of what was said.  I know from past experience that notes taken at meetings can read like a work of fiction.

I went to the meeting expecting the Board Chair to be there but it was a stranger.  He welcomed me with a crushing handshake which I drew attention to and he apologised.  The minute taker was a woman, a staff member.  The man later said he had only been a Board member for 24 hours.  Although he'd been on the Board in the past.

And so began our dialogue which I later described to a friend as "thrust and parry" and my friend responded using the term "boxing ring".  An apt description.  For I was up against it.  My resistance fighting skills came into play.

I had to continually defend my corner and challenge the attack.  The Board man said he didn't approve of Twitter and tried to get me to justify my tweets.  I thought to myself, what a load of nonsense.  I later found out he was linked to Healthcare Improvement Scotland.  (see blog post about HIS code of conduct and social media guidance)

'Psychiatric patient's treatment slammed'
The Board man was a psychiatric nurse to trade.  I wasn't surprised.  He had also been involved with the Mental Welfare Commission and we touched on this topic and many others during our adversarial conversations.  Thrust and parry.

The Daily Express we had in common (we were also born in the same year), having fathers who worked there, my dad Willie Patterson a writer, of Jeff Hawke, sci-fi comic strip, 1957-69, based in Fleet St, London.  The Board man had read my son's story in the Sunday Express, 5 October 2014, and thought it authentic (that's OK then).

At the finish of our combat/meeting the Board man said he had enjoyed the engagement.  I replied, saying something like "unfortunately I can't say the same".  I got the feeling that my opinion didn't matter much, to him or to the organisation he was on the Board of.  But it matters to me.

Here is a paragraph from the formal complaint letter Email I wrote on 6 September 2014:

"....... is an organisation that professes to "support and empower all those affected by mental illness".  If ..... is not doing what it says on the tin then it will be liable for critical feedback.  Bloggers are people who often write critically about various topics.  It's a free and democratic country and we are entitled to have our say.  Blogs and social networking have become media in their own right.  It has given power to the people.  As an organisation ..... cannot just do what it likes and give carers a telling off.  That is patriarchal and nonsensical.  It wouldn't exist without carers and it can't just have carers who agree with everything they say."

The Board man eventually asked me what I wanted from the complaint meeting and I said an apology from the CEO.  I didn't want a justification for the bullying behaviour or any attempt to lay the blame on me.  I just wanted her to say sorry.


Jeff Hawke 'Counsel for the Defence' April 1987 Titan Books (my copy)

my father Willie Patterson c1963 Perth, Scotland

Friday, 12 December 2014

@seemescotland workshop feedback: "I'd rather have action, stories, voices, emotion, the nitty gritty of life"

I viewed this see me Scotland video of workshop highlights:

tweeting as I did so:

and then put this comment on their video page:

"I'm disappointed overall in these highlights from your workshop. I was looking for something more dynamic, challenging stigma at the roots.  Activist voices. A range of media and styles of presentation. Less lecturing, more storytelling. It comes over as diffident and apologetic.  I'd rather have action, stories, voices, emotion, the nitty gritty of life. Without the reality we are not going to change anything. I'm involved to bring about change, not just to tick a box."

Thursday, 11 December 2014

HIS: "engaging in social media requires resource – a commonly held view that it is simple and easy to do is misleading"

Recently I had to take the step of making a complaint about a senior manager in Healthcare Improvement Scotland (HIS) who I noticed was using Twitter inappropriately.  To harass another healthcare professional who had different opinions and a questioning voice.  

I am very sensitive to this type of coercive behaviour, having been subjected to it myself on occasion by people in high positions who think that they are entitled to patronise, bully and exclude me because I speak out from an opposite viewpoint or with a critical voice.

When making my complaint to the HIS Chief Executive I asked for a copy of their Social Media Policy.  However I was informed that they "do not hold a formal policy on employee use of social media".  Rather the HIS staff are guided by" their "code of conduct policy" and a "Social Media Guidance" document.

Here are the points in the Code of Conduct which stand out for me (bolding is mine):

"Holders of public office are accountable for their decisions and actions to the public and must submit themselves to whatever scrutiny is appropriate to their office."

"Everyone is responsible for their own actions and behaviours and must take steps to ensure they conduct themselves appropriately at all times."

"All staff who undertake work for the organisation act on behalf of Healthcare Improvement Scotland and are responsible for demonstrating the values of the organisation through positive behaviours

  • treating one another with respect
  • giving each other their dignity
  • accepting and being sensitive to each other's differences
  • being professional in relations with each other
  • building constructive working relationships"

"By the nature of Healthcare Improvement Scotland work, staff come into contact with many people and organisations from outwith the organisation. It is important that, at all times, staff treat all people with courtesy and respect, and without bias or prejudice."

And here are the points which stood out for me from the HIS Social Media Guidance (bolding is mine):

"Things we must not do (HIS employees):

Make comments which could negatively affect the reputation of the organisation, employees, patients, stakeholders or partners.

Post content that could be viewed as unlawful, libellous, harassing, defamatory, abusive, obscene, sexually-oriented or racially offensive or of a bullying nature. Harassment, threats, intimidation, ethnic slurs, personal insults, obscenity, racial or religious intolerance and any other form of behaviour prohibited in the workplace is also prohibited on social media channels.

Use social media channels for internal business communications between fellow employees. 
It is fine for employees to disagree, but never use your external blog or other online social media channels to air your differences publicly."

"How to use social media effectively for work:

A different way of thinking:

• Employees who engage about topics relevant to our work should always be aware that their disclosures are not private or temporary. Social media disclosures live online indefinitely, and employees should remember that they will be visible to a broad audience and possible even read out of context. A good maxim is when in doubt, leave it out.

• Once initiated, conversations on social media cannot be controlled and you may hear/see things you don’t like; it is OK to have a variety of views expressed which conflict with your own.

• Social media is immediate – be aware that the types of conversation that happen in social media channels require a degree of immediacy that challenges organisational culture and the way organisations have traditionally worked. So engaging in social media requires resource – a commonly held view that it is simple and easy to do is misleading."

I believe it is the responsibility of the very senior managers at Healthcare Improvement Scotland to ensure that their employees are abiding by the Code of Conduct and behaving appropriately on Social Media.  

Guidance not followed is like a chocolate teapot, in my opinion.

[Further reading: 'Social Media policies (NHS Scotland)' Hole Ousia blog post]

Wednesday, 10 December 2014

Reblog: #HoleOusia 'Social Media policies (NHS Scotland)'

'Social Media policies (NHS Scotland)', Hole Ousia website, 9 December 2014:

"In the previous post I outlined my experience of seeking transparency in the Health Board in which I was employed.

I was asked by senior managers to reflect on my “behaviour” for seeking transparency. From the senior managers perspective I had not followed the social media policy issued by my Health Board. I was thus invited to meet with senior managers about this. It was eventually concluded that I had not breached any of my employers’ policies.

More than a year on I still feel the angst that this meeting caused me. A meeting where I had been summoned, was told I could “bring” a union representative, and where I ended up having to defend my professional character. This meeting was designated by my employers as an “informal meeting” (I assume in terms of employment law). The result is that any such “informal” meetings do not need to be recorded by the Health Board. My concern over such an arrangement is that it risks facilitating an imbalance of power that favours the employer. I am aware of health professionals who have resigned from health boards following such “informal meetings”.

In my particular case, the senior managers  focussed on one policy in particular. This was the Social Media policy of the Health Board. Actually to be factually correct, the NHS Board in which I was employed had two social media policies: one for “personal use” and another for “business use”. To me it felt like these policies were being used to stop me seeking transparency. Furthermore it was very much as if the Health Board’s priority was not the same as mine. I was trying to put patients first.

I have no expertise in developing policies for Health Boards. However, it is clear that there are significant differences between different Scottish Health Boards in terms of their approach to employees use of social media.

For example, employees of Healthcare Improvement Scotland are encouraged to use social media at work. Many staff, including senior staff have what would appear to be professional social media accounts. It is most surprising then that Healthcare Improvement Scotland have no social media policy for their staff. [FOI request: reply from Healthcare Improvement Scotland, dated 18 June 2014 “We do not hold a formal policy on employee use of social media”]  It has recently been clarified that Healthcare Improvement Scotland staff are guided by” a “code of conduct policy” and a “Social Media Guidance” document.

NHS Ayrshire and Arran has a social media policy (now 4 months beyond review date) that is publicly accessible. It is a clearly written 6 page policy that is strikingly different in approach to that of NHS Forth Valley

NHS Highland takes a similar approach to NHS Ayrshire and Arran and both would appear to be of the view that social media can bring benefits to continuing education of healthcare staff when used with careful guidance but not exhaustive restrictions.

Some thoughts:
Views on use of social media will naturally vary. Social media have the potential for both good and harm. Rev Eli Jenkins in “Under Milkwood” would likely agree.

“We are not wholly bad or good Who live our lives under Milk Wood, And Thou, I know, wilt be the first
To see our best side, not our worst.”

Some NHS Boards encourage use of social media as part of employment whilst other NHS Boards ban it outright. Some boards seem to go as far as monitoring personal use.

My view is that having no policy, such as Healthcare Improvement Scotland, risks loss of reasonable professional boundaries. The other problem is that if Healthcare Improvement Scotland wishes to use social media to support improvement work and education across Scotland, social media policies in some areas will prevent this.

I would like to see greater consistency across NHS Scotland in terms of extant policies in the use of social media.

Personally I would support the approach taken by NHS Ayrshire and Arran where there is a clear policy in place which allows the use of social media as long as this is consistent with good professional practice for all healthcare workers."