Friday, 28 November 2014

reports of a takeover have been greatly exaggerated (aka I heard it through the grapevine)

Yesterday I heard it through the grapevine that the mental health nursing programme at Dundee University would be taken over, transferred within 3 years, to Abertay University, which has set up a "centre of excellence" in response to a collective "vision".

I thought this was likely to be true because I knew of the proposed centre (although I was critical of a university programme calling itself "excellent" without any evidence plus I knew some of the people involved).  

Secondly, I also knew that Dundee University had been reducing its mental health nursing programme, had closed their Fife base.  An "on high" decision.  

Thirdly, the person who told me, who is usually accurate, had heard the news, along with other service users, from the mouth of an Abertay University mental health nursing student in a mental health setting.

So I had no reason to doubt the message.  It sounded about right.  And so I Emailed the various folk I knew at both Abertay and Dundee Universities, asking for confirmation that the message was true.

I got a response last night from a Dundee University colleague who said: "My information is that your source is not accurate".

Therefore I have to assume that reports of a takeover have been greatly exaggerated.  






Wednesday, 26 November 2014

'We need to step away from artificial targets' in Pulse @mgtmccartney & @PeterDLROW

'We need to step away from artificial targets' in Pulse, 7 November 2014

"As the lead of a new group tasked with examining the harms of overdiagnosis, Dr Margaret McCartney (@mgtmccartney) tells Pulse reporter Caroline Price why a wider debate is needed about the direction medicine is heading."

Excerpts:

"Dr McCartney has wasted no time in using her platform on RCGP council to take these concerns right to the top of the agenda. Since her election to council last year, she has instigated the creation of a new standing group, specifically tasked with addressing these problems and giving GPs more support and professional guidance on how to deal with the conundrum in their daily practice.

The creation of the group, she tells Pulse, has come out of growing concerns from GPs that the Government is shifting the focus away from those patients with the greatest need onto preventative measures for healthy people, for which the benefit-to-risk ratio is far less certain
."


and
"She says: ‘We’re interested in policies that drive over-diagnosis and under-diagnosis – in particular thinking about prescribing practices, guidelines and QOF and what could be done to try and help in those areas.

‘We’re also thinking about practice day-to-day. How to make good evidence-based decisions with patients in the stress of a 10-minute consultation – and quite often two or three problems from patients. So, what kind of information we need easily on hand within five seconds, to help GPs and patients make good decisions.’

But Dr McCartney is also clear these problems are part of a wider debate to be had with patients and in society in general, about the direction of medicine and how best to use limited healthcare resources.

She says: ‘I think it’s patients who deserve to know that the resources are not going in the right direction at the moment and that we should be redirecting it to people who are most likely to benefit.’"

and
"Similarly, Dr McCartney argues the controversy over policies to incentivise GPs to screen for and diagnose dementia marks a watershed – a time to ‘let go’ of targets and let GPs’ professionalism take precedence.

She says: ‘There is a revolution needed, we need to step away from targets… that create deprofessionalisation of our work, and let go.’

She adds: ‘Doctors are vocationally trained, reflective people paying attention to the evidence… peer review, being open about diagnosis rates, alert to criticism – that should be what we are basing our practice on. It should not be the creation of artificial targets.’"

[Read complete article]

Comment from Dr Peter J. Gordon (@PeterDLROW), Psychiatrist for Older Adults, NHS Scotland; 25 November 2014

"NHS Scotland had a financially incentivised approach to the "early diagnosis" of dementia. This was HEAT Target 4. The target was reached and the Scottish Government were triumphant about this presenting the achievement to Westminster in 2012 (All Party Parliamentary Group)

NHS Board in Scotland took robust measures to reach the target and thus gain the financial reward. Practice became skewed in many ways to reach the target.

This target was set by the Scottish Government. The most Senior Official for Mental Health in the Government (Mr Geoff Huggins) stated that the Government had been careful "to take out saboteurs" and that any disagreement by doctors or managers would be dealt with "behind the bike shed".

Wind on nearly 4 years and it is emerging that elderly patients were mis-diagnosed with "early dementia" as a result of this target. In fact they have static age-related memory loss and not dementia.

Scotland stands as evidence emerges of the harmful effects of an incentivised target based on "early diagnosis". It is no light matter to make a wrong diagnosis. Ask those mis-diagnosed.

I personally campaigned across the United Kingdom for an approach based on a TIMELY approach to diagnosis. This approach was completely rejected by the Scottish Government throughout my "engagement" with them. But CURIOUSLY the Scottish Government are now taking credit for a timely approach to diagnosis. This is quite sickening as Scotland could have offered an important lesson had the Scottish Government been open, honest and shown probity.

I agree with all those who say that chasing a crude uncertain population target, a target that is politically motivated and has been promoted RELENTLESSLY by the Alzheimer's Society is UNETHICAL.

This approach risks generating a huge amount of fear. It also risks medicalising too much of ageing such that those living with dementia are further disadvantaged as services get ever more stretched.

Above all a TARGET like this, and I realise that NHS England call it an “ambition”, ignores complexity and the parabolic distribution of cognition over our life course. Our elder generation deserve far far better."


 

being singled out for "special treatment"

I've never liked to be singled out for anything, whether it be praise or admonishment.  Didn't you do well.  Aren't you clever.  Go to your room.  You are banned.  That hairstyle suits you.  Where did you get that hat?

For I think that "special treatment" in mental health matters can be another word or words for patronising, patriarchal, bullying, stigmatising and discriminating behaviour from people who have labels after their name.  Rather than labels instead of their name.

For example.  I am a psychiatrist.  I am a social worker.  I am a mental health service user.  I am a schizophrenic.  I am a train driver.  

The other day I was speaking to a class of social work students and said that I call myself a psychiatric survivor.  Some said they found that term offensive, took it personally.  I said that for me it was empowering, it made a statement about my personal experience.  

To go about saying "I am a former mental health service user" or "I used to use mental health services" would definitely, in my opinion, single me out for "special treatment".  Same goes for being known as a "psychiatric survivor".

I'd rather be sent out of the room for challenging the system than stay in the room and be subject to patronising, patriarchal, abusive treatment.  That's for sure.  I've never been one to lie down and take it.





Monday, 24 November 2014

'Spirituality and hearing voices: considering the relation' Psychosis journal, October 2013

'Spirituality and hearing voices: considering the relation'
Simon McCarthy-Jones, Amanda Waegeli & John Watkins; 23 Oct 2013

Psychosis: Psychological, Social and Integrative Approaches, Volume 5, Issue 3, 2013
Special Issue: Voices in a Positive Light

Abstract 

"For millennia, some people have heard voices that others cannot hear. These have been variously understood as medical, psychological and spiritual phenomena. In this article we consider the specific role of spirituality in voice-hearing in two ways. First, we examine how spirituality may help or hinder people who hear voices. Benefits are suggested to include offering an alternative meaning to the experience which can give more control and comfort, enabling the development of specific coping strategies, increasing social support, and encouraging forgiveness. 

Potential drawbacks are noted to include increased distress and reduced control resulting from placing frightening or coercive constructions on voices, social isolation, the development of dysfunctional beliefs, and missed/delayed opportunities for successful mental health interventions. After examining problems surrounding classifying voices as either spiritual or psychotic, we move beyond an essentialist position to examine how such a classification is likely to be fluid, and how a given voice may move between these designations. We also highlight tensions between modernist and postmodernist approaches to voice-hearing"

Excerpt

"Spirituality may help voice-hearers in a number of ways, although many of these ways remain to be rigorously empirically tested. First, it may offer an alternative explanation for people not satisfied by medical explanations,2 which may be more meaningful and aid coping. As Cockshutt (2004), a voice-hearer, has noted, he wanted “an explanation. Not a medical explanation because in many ways that means little to me … The idea that the voices have a spiritual connection will certainly appeal to many” (p. 11). 

Voice-hearers’ pre-existing spiritual worldviews, or new ones they feel necessitated to develop as response to voice-hearing (Robin Timmers, personal communication, 3 May 2013), may offer a coherent framework to make sense of voice-hearing, increase ownership and feelings of control, and reduce distress. Indeed, in a study of religion/spirituality in people diagnosed with schizophrenia, Mohr et al. (2006) found that “when other sources of support are lacking, spiritual support makes explanations possible when no other explanations seem convincing, brings a sense of control through the sacred when life seems out of control” (p. 1958). This can reduce distress and anxiety (Mohr et al., 2006) and offer comfort."


Read complete article


Saturday, 22 November 2014

London demo 29 November 2012: 'bringing in the heavies at the perinatal psychiatry conference' with SOAP

[Remembering our day trip to London, joining with like minds in a protest]

Photos taken by Cheryl Prax, Speak Out Against Psychiatry.

Cheryl
More about the protest on 29 November by Speak Out Against Psychiatry at the perinatal psychiatry conference in London: 'Current Issues in Perinatal Psychiatry: Medication, Parenting Capacity and Ethical Issues'.  Where a small group of us, mostly women, challenged the psychiatric drugging of mothers and children, and the use of ECT/shock treatment, especially on pregnant women.  Asking for alternatives to be considered.


I arrived at the Hallam Conference centre at about 3.15pm to join the demo and immediately noticed the big security guard at the entrance, standing at the top of about 3 steps, a few feet from the door of the building.  A large muscled man of about 6ft 5ins, although I can't be accurate about height because at all times when speaking to me he was standing on the top step.  And he probably looked bigger than he was.  It reminded me of bouncers at nightclubs, although they are usually on the same level.  Or of psychiatric ward 'heavies' who are brought in to ensure compliance to treatment.

The demonstration was peaceful, as we handed out leaflets to people coming out of the building, and spoke out our concerns about pregnant mothers being given psychiatric drugs, the risks to their unborn baby, and I was asking the psychiatrists to consider alternative ways of treating mothers, before and after childbirth.  A very unsettling time for a woman, bringing a new life into the world, all the responsibilities that go with it.  Especially if the pregnancy and/or childbirth is difficult.  Which is what happened to me in 1978 and 1984.

Some of us were taking photos and filming the demonstration, and the security guard wasn't happy about this, or even about us being on the pavement at all.  Therefore as we engaged with people coming out and going in to the building, the bouncer began to engage with us.  I say 'engage' but it was more like telling us not to be doing this and that.  Of course it will be what he usually does, on the job.  Keeping order in the masses and looking out for trouble.  In addition another man, beard and glasses, about 50, slim build, kept coming out of the entrance, going back in again, looking worried.  Not sure who he was, he didn't engage with us. 

At one point the security guard said to me "you're not listening".  I replied that it wasn't appropriate to be saying this to me.  He repeated it again and was getting edgy.  I asked if he had undergone any training in communication skills.  He got more agitated, said he had been told not to allow any photos to be taken, then showed me his folder and instructions.  I climbed a few steps to look at it.  He was right, it did say 'no photos'.  So he was only doing his job.  As in 'he who pays the piper calls the tune'.

Then the Speak Out Against Psychiatry film maker, who had her big camera on a tripod, engaged with the bouncer, saying she was allowed to film us.  Cheryl said she had checked it out with the police and it was fine.  I said that anyone could be taking photos from across the road, in one of the flats, from behind the curtains, for example.  And anyway, were we now in a totalitarian state rather than a democracy? 

Meanwhile the bearded man from whatever institution was keeping an eye on us from inside, seeing our conversations with the bouncer.  And suddenly came out to say something like "I am sending for the police", but he didn't come up to us or down the steps.  Only shouted it from the door.  Like a threat and it reminded me of the growing presence of police in psychiatric wards.  I wondered if we were going to be lifted into a police van and taken into the police cells, or into a psychiatric institution.  It was exciting.  Like you see on the news.  Except for the fact that we were only expressing an opinion and trying to have an influence.  Against psychiatry.  Then the bouncer went into the building.  

Soon after the police appeared, two men in uniform but without guns, and spoke to us on the pavement.  One talked to Cheryl and the other to a group of us, saying that it was a free country and we could demonstrate, take photos, hand out leaflets etc, as long as we didn't block the pavement for passers by.  This sounded reasonable and when I asked him what he thought about pregnant women getting psychiatric drugs, he said that when he was in uniform then he didn't have an opinion.  A good answer.  (whether it's true or not is a different matter)
me and son Daniel

And so we continued to demonstrate, hand out leaflets, engage with psychiatrists and sing a group song (to the tune of Pink Floyd's 'another brick in the wall'):

"We don't need no medication
We don't need no mood control
No dark sarcasm on the ward round
Charge nurse, leave them souls alone


Hey, doctor, send them patients home
All in all, it's just another bed on the ward
All in all, you're just another bed on the ward"


St Peter's film #Omphalos - 'Seminary in ruins for quarter of century to be resurrected' Herald, 22 November 2014



St Peter's from omphalos

"St Peter's Seminary, just outside Cardross, was completed in 1967

It is now considered Scotland's most important "modern ruin"

This film tells its story.

The film is based on a visit by Dr Peter J. Gordon on the 8th December 2013.

Archive footage from the Scottish Screen Archive: ssa.nls.uk/

Music by Woodkid (live performance avec l'Orchestre National de Lyon): youtube.com/watch?v=mV7x8oCGHwc

Further background soundtrack from Dexter Britain (under common licence):

"The War In My Head" by Dexter Britain (dexterbritain.co.uk)
"Time Catches Up" by Dexter Britain (dexterbritain.co.uk)
"After The Week I've Had" by Dexter Britain (dexterbritain.co.uk)
"Going Under" by Dexter Britain (dexterbritain.co.uk)"




'Seminary in ruins for quarter of century to be resurrected


Prison Suicides: Chronicle of a Death Foretold in Private Eye, October 2014

In Private Eye, October 2014 (thanks to carer friend for passing on):




'Glen Parva has 'lessons to learn' after prisoner Steven Davison's death' BBC News 12 September 2014

'The Observer view on the desperate need for prison reform' 7 September 2014 


Thursday, 20 November 2014

the tipping point

blog post from 17 November 2012:

[I started writing this blog post a few days ago and then ironically experienced my own 'tipping point', something that happened to change my perspective and set me on a different course of action]

A tipping point is described variously as the threshold or moment of critical mass or the crisis stage in a process.  In physics it is "the point at which an object is displaced from a state of stable equilibrium into a new, different state".  Malcolm Gladwell in his book 'The Tipping Point: How Little Things Can Make a Big Difference' (2000) talks about a social epidemic being dependent on the involvement of a few people with a "particular and rare set of social gifts", the 80/20 principle.

And these people he describes as connectors, information specialists and persuaders.  With networks, knowledge and powerful negotiation skills.  Gladwell mentions wanting to show people how to start "positive epidemics of their own", making sense of the world and it being a "very fun ride".  In the crazy world of psychiatric services where consumers are in danger of being consumed, it might be the only way of bringing about transformative system change and a new way of being.

By understanding the tipping point Gladwell suggests that we have a way of "decoding" the world around us, and coming to terms with sudden change.  Which despite our best efforts is irresistible.  As in the movements of social change that have swept society along, started by the few with a commitment to change.  An exciting phenomena especially in terms of psychiatric system change.  For those of us who are working to transform a system that is oppressive, and where the threat of force is ever present.

I take hope from the reminder that "Things can happen all at once, and little changes can make a huge difference.".  Here's to little changes and huge differences.  

A toast

Here's tae us
Wha's like us
Damn few,
And they're a' deid
Mair's the pity!

May those who live truly be always believed,
And those who deceive us be always deceived.
Here's to the men of all classes,
Who through lasses and glasses
Will make themselves asses!

I drink to the health of another,
And the other I drink to is he
In the hope that he drinks to another,
And the other he drinks to is me.

Then let us toast John Barleycorn,
Each man a glass in hand
And may his great prosperity
Ne'er fail in old Scotland!


[proviso: this isn't an exhortation to drink alcohol as I don't drink it myself but rather an encouragement to keep on keeping on!]


misogyny and mental health

I do wonder if it's inevitable in a patriarchal system like psychiatry that we will be faced with misogyny at every level of our engagement in mental health matters?  I've found it at the grassroots with paid workers who think they have the right to bully women and mental patients who have been treated like women in psychiatric settings.

I've been faced with it recently.  Male workers trying to speak on my behalf and when that doesn't work then they have a go at bullying me into submission.  Which definitely won't work, that's for sure.  There is nothing more irritating to be patronised then picked on by people who are more ignorant than I am.  It means I have to "man up" and get them telt.  

They don't like to be told and it can lead to an argy bargy with them losing their "cool" and making a fool of themselves in front of others.  Then I just get bored with it.  Move on to other things more interesting. 





Wednesday, 19 November 2014

scapegoating and solidarity

Yesterday I experienced again what it feels like to be the scapegoat in a situation, the one singled out for "special treatment" because I had a different stance from the "others".  It didn't feel pleasant to be ganged up on.  It never does.  However I wasn't alone.  Friends stood by me.  In solidarity. 

It caused me to think of "mental illness" and my family where all of us through 3 generations have been in and out of the psychiatric system.  All of us subject to "special treatment".  Forced drugging, detained under law.  Some of us got ECT, others of us didn't.  Shared pain.  In solidarity.

I think our experience is special and something to be proud of.  A good thing, a bonus.  We have on occasion had to take each other into psychiatric settings and help each other out.  I've been more of a rescuer and an advocate for family members.  It's been a privilege.  A calling.

But I'm not prepared to be scapegoated by "others" for no good reason.  I will resist the "special treatment" because it isn't special or clever or nice.  I call it bullying and intimidation.  For that's what it is.  None of us deserves to be singled out in that respect.  I won't stand for it.  That's for sure.


Monday, 17 November 2014

Capacity and Consent - I agree with what you say - Scottish Parliament has to act - Scottish Government has to serve and be accountable

[An Email response I wrote this morning to a mental health human rights campaigner who had sent his paper on Capacity and Consent which was "relevant to the two petitions" that he "submitted to the Public Petitions Committee".  I was copied in to his Email along with a number of fellow campaigners, journalists, law experts, MSPs and others.]

"Dear ...... thanks for your Email.

I agree with you that "a conference that incorporated campaigners, mental health professionals, human rights experts and legal experts" makes perfect sense and would enable frank and honest discussions, all voices to be heard, more level playing fields and meaningful involvement.  

I was excluded from the Scottish Patient Safety Programme for Mental Health (SPSP-MH) events from its inception until the present day.  Why?  Healthcare Improvement Scotland (HIS) chair Denise Coia gave no full explanation and neither did Ruth Glassborow who used to work with Scottish Government and now works with HIS.  The only reason given was that if I attended then "others" wouldn't attend.  No good reason whatsoever.  And then I received an Email from Dr Coia, apparently mistakenly sent to me, which talked about me.  I also questioned the allocation of places for the IIMHL in Manchester, but as usual got no response.

I believe that I was excluded from patient safety events because of the dehumanising treatment perpetrated on my son in Stratheden Hospital in February 2012.  At the time this happened I was a member of the Scottish Crisis and Acute Care Network Steering Group, whose co-leader was Dr David Hall, also lead on the SPSP-MH,  The crisis steering group therefore was a party to all that happened with my son in the seclusion room of the Stratheden IPCU.  There could have been no dubiety because I wrote blog posts about it at time, in detail.

I complained again about being excluded, this time in June from celebrations at Edinburgh Castle where fellow psychiatric survivors and mental health service users were invited to an event with Alex Neil, MSP and CabSec for Health (I saw photos on Facebook), and I wasn't.  I wrote an Email about it on the morning of 24 June 2014, to Alex Neil, Michael Matheson, Nicola Sturgeon and Alex Salmond, then forwarded it to Geoff Huggins and his colleagues on the SG mental health division.  And then at 5pm 24 June I received a bullying and undermining Email from Mr Huggins which slandered my intentions and character. 

On 25 June I had been booked to present a paper at the Liverpool INTAR conference, on the Mental Health Act Safeguards, and had to give apologies due to being upset at Mr Huggins Email which hurt me because of its unfair allegations about my character.  Then on the 27 June my son had to call out the paramedics on my behalf due to blood pressure issues.


On 29 September 2014 I received a letter from SPSO telling me that my complaint against NHS Fife, in respect of "unreasonable treatment" of my son in the Stratheden IPCU seclusion room, was upheld.  He had been locked in for hours on end with no toilet, drinking water, light switch outside, broken hand untreated.  He had also been transferred in his underpants and bare feet, I was a witness, by porters, without any covering, between acute and locked wards, in a minibus.  I saw his shame from outside in the car park where I had been left to stand for hours.

I agree that there does seem to be a "cover up" and a silencing of critical voices in Scotland's mental health world.  No dissenters allowed.  Furthermore there is a maligning of reputations when we will not be silenced or "shut up and go to bed", as I was told by a VOX (national mental health service user organisation) Board member.  The chair of the VOX Board is employed by NHS, works with HIS.  A conflict of interest.  They are more of a focus group of government (FoG) rather than a member led group, to the detriment of "meaningful involvement".

Even the other week at a Mental Welfare Commission consultation in Edinburgh I had two VOX Board members bending my ear about their Board Chair and her links with HIS and Scottish Government.  As if I could do something about it.  No I can't.  I have tried and the game's a bogey.  If the world is watching Scotland in terms of mental health matters or the work of Healthcare Improvement Scotland then what they are hearing from HIS on social networking is nothing like the reality.  That's for sure.  

"If ye want to ken us then come and bide wi' us."  The reality of being a mental (psychiatric) patient in Scotland is one of Russian Roulette and a postcode lottery.  Nothing is guaranteed.  Patients aren't safe.  Mental Health Act safeguards don't work, in my experience of both NHS Fife and NHS Tayside, Stratheden Hospital in 2012, Carseview Centre in 2013.  I knew my rights and we knew the MH Act but that made no difference because the Act was not implemented properly or monitored effectively.

Mental Health Tribunals are weighted in favour of the "professionals", the patients are often drugged up before attending.  Advance Statements are altered by psychiatrists to fit their regime.  Named Persons if they also happen to be mothers and carers are not respected.  Independent Advocacy isn't independent and isn't available when you really need it, the workers are paid a pittance compared to other "professionals".  In my experience Mental Health Officers behaved unprofessionally and the Mental Welfare Commission were wise after the event and had no power to influence health boards to improve buildings that they had declared “unfit for purpose”.


I hope that you will be heard, that justice will be done, that Scottish Parliament will act and that Scottish Government civil servants will be accountable.

Yours sincerely,

Chrys Muirhead (Mrs)"


Thursday, 13 November 2014

Sunshine Act for Scotland petition Dr Peter J Gordon, Public Petitions Committee 11 Nov 14 Scottish Parliament (outcome? ask Scottish Government)

[update: I attended the Public Petitions Committee meeting on 11 November 2014, from 10am, and at around 12 noon the Sunshine Act for Scotland petition was considered. Action?  Two minutes mention of contacting Scottish Government to ask about the NHS Circular HDL (2003) 62 (Registers of Interest) progress.  My thoughts?  Swingball.  Pass the buck.]

The Sunshine Act for Scotland petition submitted by Dr Peter J Gordon was considered by the Public Petitions Committee at its meeting on Tuesday 11 November 2014, in the Robert Burns Room (Committee Room 1) in the Scottish Parliament. 

"Calling on the Scottish Parliament to urge the Scottish Government to introduce a Sunshine Act for Scotland, creating a searchable record of all payments (including payments in kind) to NHS Scotland healthcare workers from Industry and Commerce."

A substantially verbatim transcript of proceedings will be produced following the meeting and will be published on the Parliament’s website approximately one week after the meeting here.

Following the meeting the petition webpage will be updated and the outcome of the Committee’s consideration can be found here.


Posts about the Sunshine Act on Peter Gordon's Hole Ousia blog.

Herald Editor supports Dr Peter Gordon's Sunshine Act Petition, 18 May 2014

Doctor calls for drug payments register - Herald article 13 November 2013
 

Wednesday, 12 November 2014

"Oral evidence to Health and Sport Committee - I would like five minutes" Email sent yesterday evening to MSPs

Here is an Email I sent yesterday evening to a large group of about 50 people, in response to an Email from a fellow unpaid human rights activist.  The recipients included a host of MSPs, some of whom are on the Health and Sport Committee at Scottish Parliament, considering the evidence for the Mental Health (Bill) Scotland:

"...... thanks for your Email.  I agree with what you say and would like five minutes.

I attended Scottish Parliament today as a spectator and unpaid carer at the Public Petitions Committee and sat for two hours, silently, waiting for the Sunshine Act for Scotland Petition to be considered.  When it came up on the agenda the recommendation was to write to Scottish Government about the Registers of Interest and the NHS Circular HDL (2003) 62, to get an update.  Therefore as yet we have no Sunshine Act and no transparency regarding the links between doctors and drug companies in Scotland.

When at parliament today I saw people I knew from Scotland's mental health world, in paid positions, who were going to give evidence to the Health and Sport Committee.  In fact I knew all of the representatives' names on the list from the Mental Health Network Greater Glasgow, SAMH, the Scottish Independent Advocacy Alliance, The Alliance, The Carer’s Trust and Inclusion Scotland.  Many of them people I have worked alongside on initiatives or at meetings.  The only difference is that they were paid and I wasn't.


Since 1980 I have been a grassroots community development worker in Lanarkshire, Fife and Perth, some of it paid, much of it voluntary, and I remember it as a level playing field, whether paid or not.  However since getting involved in Scotland's mental health world in 2008, setting up Peer Support Fife, voluntarily, and then having to give up paid work to support my sons in and out of psychiatric settings, it has been anything but level, equal or fair. 

I would have been far better off, financially and reputation wise, if I had stayed in paid work and allowed the state to take care of my youngest son, locking him up in medium or high secure psychiatric accommodation.  It's happened to other young men in Fife.  Anything from £4000/week upwards in cost to NHS.   Let's do a calculation from April 2012 when my son was discharged and imagine that instead of coming home to me that he went into Orchard Clinic or the State Hospital (as mentioned by the RMO).  Let's say 130wks x £4000 = £520,000. 

And eventually back out "in the community" he would require daily support from a housing association and a social worker and a CPN etc.  Whereas we got no support except for occasional meetings with a psychiatrist where I supported my son in tapering the Haloperidol, within 5 months, which was forced into him in the Stratheden IPCU, in the locked seclusion room which had no toilet, no drinking water, light switch outside.  My son has been disabled by the system.


As a reward for advocating for my son and challenging his treatment I was accused in the Fife Council Adult Protection Investigation report of causing my son "psychological harm".  I was badmouthed in the hospital records so as to justify their "unreasonable treatment".

Despite all this unfairness and injustice I kept up the campaigning, spoke out and eventually had my complaint against NHS Fife upheld by the Ombudsman, 32 months after first raising a complaint, receiving the letter a day after my 62nd birthday, at the end of September 2014.  Yet still I am not permitted to give evidence in person at the Health and Sport Committee in Scottish Parliament.  For five minutes.

Disheartened, Chrys"

tweeting responses today @brobson3 and @GeoffHuggins

For interest, a few responses from me on twitter to Dr Brian Robson, "Executive Clinical Director of Healthcare Improvement Scotland, Health Foundation / IHI Fellow and GP @brobson3", and Geoff Huggins "practicing contrarian working in health views someone else's @GeoffHuggins:
My response:
and


My response:
and


My response:
and


My response:
and


My response:


FOI request - ECT prescribed and given to children and adolescents in Scotland over 5yr period 2008-2013


Here is an Email I sent on 9 November 2014 to Dr Alistair Hay, Consultant Psychiatrist and Vice Chairman of the Scottish ECT Accreditation Network:


"Dear Dr Hay

I am writing to you with an FOI Request as to the statistics for ECT given to children and adolescents in Scotland over a 5 year period from 2008 to 2013.

I was hearing on Wednesday at the Mental Welfare Commission for Scotland consultation on their Visits Programme, from a fellow psychiatric survivor/service user, that children in Scotland get ECT.  I was shocked to hear this and didn't think that children in Scotland got ECT.  Hence this FOI request to confirm or allay my fears.  I'm thinking that my colleague may be wrong as I have checked through the latest SEAN report and can't see any mention of children getting ECT.

However there was a review this last week in the BJPsych of the book 'Electroconvulsive Therapy in children and adolescents' by lady doctor and psychiatrist Gordana Milavic, SLaM, where she seemed to be saying that ECT for children was of no risk whatsoever (children being under the age of consent for most things but apparently not shock treatment).  Here is my blog post about it:
http://chrysmuirheadwrites.blogspot.co.uk/2014/11/electroconvulsive-therapy-in-children.html

I want to know details about numbers of children 16 and under receiving ECT in Scotland.  I would like a breakdown of numbers getting ECT in every health board area and for what reason eg diagnosis or condition or whatever.  Age ranges eg 12-16, 8-12, 5-8, and under 5.  Or whatever age ranges are used in the monitoring and evaluation of ECT to children.  I want to know about any "critical incidents" or deaths due to ECT given to children in Scotland.  I would like to know how many boys compared to how many girls are getting ECT in Scotland.  And any other details which are, and should be, available on this topic.

I am copying in Linda Cullen, head nurse for ECT in Scotland, Colin McKay, Chief Executive, MWC, Paul Gray, head of NHS Scotland and chief of the Health and Social Care Integration, and Geoff Huggins, acting director for Health and Social Care Integration and chief wrangler at Project Ginsberg, for their information.

I look forward to hearing from you,

Yours sincerely"

I received these responses on 10 November 2014:







Saturday, 8 November 2014

'Electroconvulsive Therapy in children and adolescents' "spearheading" doctors "re-introduce" ECT, book review in BJPsych

"It would appear that there are no absolute medical or neurological contraindications to ECT

so says Gordana Milavic, Clinical Director of the Child and Adolescent Mental Health Services at SLaM, as well as a consultant psychiatrist with the CAMHS Mood Disorder Service, Maudsley Hospital London, in this book (£37.50) review from the British Journal of Psychiatry.

and

"Side effects in young people appear to be generally mild and transient"

[I notice that the word "appear" is used rather than a more definite article.  I recommend Dr Milavic to try out a course of ECT on herself, 8-10 treatments, repeated if "treatment resistant", then come back and do another book review to see if her opinion appears to have changed]



From Amazon UK:

"This is a pioneering book and is the first book of its kind. The book offers guidance about the use of ECT in adolescents with up to date and concise information. The editors of the book are Neera Ghaziuddin MD, MRCPsych (University of Michigan, Ann Arbor, USA), and Garry Walter, MD, Ph.D. (University of Sydney, Australia) who spear-headed the re-introduction of ECT as a safe and an effective treatment option for a subgroup of adolescents with severe psychiatric disorders. This book offers a review of the existing literature, firsthand experience of the authors regarded as experts in their respective field and highly informative case descriptions." (bolding is mine)

My opinion:  They should try and do their best to find other, more compassionate, less invasive, treatments for distressed children that do not involve causing further trauma. 


a reworking of a Shakespearean comic woodland tale from the mental health perspective

I woke up this morning thinking of when I was in the Brownies as a girl and a member of the Pixies or the Elves (can't remember which).  Working for
Brownie promise badge
badges to sew on my shirt like sewing and knitting, nature study and collecting.  I enjoyed the Brownies but found the Guides too serious and restrictive.


This led to thoughts of hobgoblins and Shakespeare's comedy in a woodland setting which had undercurrents of mischief and malevolence, not unlike the hierarchical shenanigans in Scotland's mental health world settings. Where the powerful play at games, favouring the few who bow the knee and leading others on a merry dance that isn't very merry when you're on the receiving end of it.

Here's my own short story introduction based on a scene in the woods where Bottom becomes an ass, Puck is outed, Quince has his say and Hippolyta gets her own back.

Characters
Puck (Robin Goodfellow), a hobgoblin, prankster, wise knave
Bottom (Nick), representing a troop called The Mechanicals
Quince (Peter), an author surrogate, representing William Shakespeare, comically
Hippolyta, queen of the Amazons, who possessed a magical girdle she was given by her father Ares, the god of war
 
Once upon a time in the forest there was a meeting of minds and justice was done.  What led up to it was a series of pranks perpetrated by Puck involving Bottom and the Mechanicals which impacted on Quince and therefore caused irritation to Hippolyta who was a strong woman used to standing up to men and getting her own way.

It was the donkey's head that did it.  Making an ass of Bottom had a negative effect on Quince who was both writing and directing the play.  He wasn't a perfect writer but then who is.  Hippolyta had the benefit of the magic belt which was a protection.  Puck was no goodfellow when it came to making a fool of The Mechanicals.

Something had to give.  Someone had to go.  And the donkey's head had to be prized loose off Bottom so that reason could prevail and the troop become more or less Mechanical.  It made sense for Hippolyta to get meaningfully involved and the girdle gave her the strength to do so ...


more anon ....

Thursday, 6 November 2014

feedback from yesterday's Mental Welfare Commission for Scotland consultation event on their Visits Programme

I attended the Mental Welfare Commission for Scotland consultation event yesterday in the COSLA conference centre, Haymarket, Edinburgh, on the topic of their Visits Programme.  We were a small group of service users, psychiatric survivors, carers, advocacy workers, others and MWC staff.  I found the event to be better than expected. 

Best bit about it, as ever, was engaging with fellow experts by experience.  Peers.  People like me who have been subject to psychiatric treatment and have survived, independent opinions intact.  We were speaking out in solidarity, sometimes in agreement, sometimes not, but that was OK.  We're not clones.

The MWC staff listened to us and the independent facilitators did their best to co-ordinate the discussions.  I went off on my own from time to time so as to chat with a MWC worker or to the COSLA catering staff or to look at the feedback being gathered.  Tweeting on occasion.  Complaining if I felt the need (the need for programmes, preferably before the event, so that we were informed and empowered).  

Mostly I was left alone to do my own "thing".  To join in with the table groups when I felt like it and to say what I thought.  Nowadays I like to test out events to see if there is the freedom to be an independent person.  To find out if straitjackets are at the ready.  If voices are being silenced.

The lunch spread was nice and the catering staff who served us were helpful.  Some of us stayed chatting for a while during and after lunch, catching up and also getting to know each other.  Sharing experiences.  I heard many stories during the morning and that's a good sign I think. 

Here are some photos I took of feedback yesterday on post-its, flip chart sheets and tablecloth:


my doodle

valid point (I'd go further, use word "retaliation")

what rights if sectioned? (sometimes none) my bit in red/blue below

collective responses (mine on the left)

my response "nothing much"

Rights in the pink, a good selection from folks