“When managers rule”

@PeterDLROW: “So “was it worth it?” Despite the experiences I have outlined, I wish to document some personal successes:

  • I advocated a timely approach to the diagnosis of dementia, when virtually nobody else would. It is now considered the best approach across Europe.
  • I have promoted transparency across NHS Scotland (and will continue to do so)
  • I continue to advocate that we routinely consider ethics in every healthcare encounter”

Hole Ousia

The title from this blog-post is not mine. “When managers rule” was the title Professor Brian Jarman gave to his British Medical Journal Editorial published two years ago this Christmas.

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At the time that the Editorial was published my family, many of whom have had a career in healthcare, found themselves discussing it. The Editorial also attracted a significant number of written responses to the BMJ.

Two years on from the publication of Professor Jarman’s Editorial, my thoughts have returned to it given the recent short-life review of quality and safety in Aberdeen Royal Infirmary:

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I generally find that narrative is the best way of approaching, and perhaps best appreciating, complex matters such as this.

Here I shall set out a narrative of my two years as an NHS consultant since Professor Jarman’s Editorial. I hope that my experience can add, in some small way, to the wider appreciation…

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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]

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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.”

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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.]

 

Why you can live a normal life with half a brain

comment from a Tom Michael on blog post: “I think you need to make the distinction between a person who was born without a specific area of the brain, versus an adult who suffers a brain injury to a specific area.

I’m sure that you’re aware of this, but it might give a false impression to your readers that the adult brain has the same plasticity and capability to adapt after injury as the brain of a baby with a specific malformation.”

response from Tom Stafford: “Thank you for adding this note, which is absolutely correct”

Mind Hacks

A few extreme cases show that people can be missing large chunks of their brains with no significant ill-effect – why? Tom Stafford explains what it tells us about the true nature of our grey matter.

How much of our brain do we actually need? A number of stories have appeared in the news in recent months about people with chunks of their brains missing or damaged. These cases tell a story about the mind that goes deeper than their initial shock factor. It isn’t just that we don’t understand how the brain works, but that we may be thinking about it in the entirely wrong way.

Earlier this year, a case was reported of a woman who is missing her cerebellum, a distinct structure found at the back of the brain. By some estimates the human cerebellum contains half the brain cells you have. This isn’t just brain…

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Ethics, a doctor and his hairt-beat

Hole Ousia

I had several envelopes like this delivered through my letter-box.

Immediately recognisable, even before opening, I felt my heart (‘hairt’ in Scottish) beat much faster.

I shall try and explain why.

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This is another pattern that I wish to present.

Alexander McCall Smith, as an admirer of my films, wrote to me about our shared interest in patterns. He recommended this book “A pattern language” which has inspired some of my recent posts:

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The envelopes from NHS Forth Valley to my home address were always from Senior Managers and nearly always officially reminded me of “Good Medical Practice” as issued by the General Medical Council.

Here is an example from a letter from the Medical Director to me dated 21st May 2014. It was part of a wider letter.  The letter made references to my “behaviour”. The letter summoned me to another “informal” meeting with the Medical Director…

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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.

 

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

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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.”

 

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:

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