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To be continued
Published October 8, 2007 General Stuff , Links , News from the Wards , Star Wards , Star Wards Ideas in Detail Leave a CommentReading something about ECT made me realise we’ve never intentionally used those letters in that combination. We’ve got a million opinions and ideas about medication whether voluntarily and informedly taken or forcibly administered, I’ve sounded off about the use of ‘mechanical restraint rooms’ in Continental Europe and stun guns (on mentally ill children!!) in America. But not a word about ECT.
There are three reasons for this. The main one is that ECT totally freaks me out. The second is also a personal one. There was, terrifyingly, an ECT room on the ward where I was at The Priory. But on the ward at St Ann’s (which inspired the setting up of star Words) the only things plugged into electrical sockets were toasters, TVs and hair dyers, Not people.
And thirdly, it just hasn’t come up. Why is this? Why aren’t magazines, journals, conferences, agendas regularly including stuff about the most intrusive, bizarre and controversial treatment? I have once been offered to be shown an ECT suite when visiting a hospital. Otherwise ECT has never been raised or seen.
Completely hypothetically, what sort of things could Star Wards do in relation to ECT?? In partnership with patients who have experience:
1. Think about the standards for ECTAS, the Royal College of Psychiatrists’ accreditation scheme for ECT services, to see if we think they are as robust and require services to be as ‘patient friendly’ as possible, if that’s not an oxy-moronic concept in relation to ECT. Liaise with RCPsych colleagues if we feel the standards and accreditation process could be improved. (We’re closely involved with the College through their sister scheme for acute wards, AIMS.)
2. Look at the following and think whether there are additional implications for patients experiencing ECT. Star Wards’ 75 ideas; information about members’ services, activities etc; AIMS’ standards
3. Spend time hanging around an ECT suite talking to patients, staff and carers:
4. Solicit ideas through articles, blogging, networking, conferences etc.
The sorts of things we’re likely to want to promote are examples of excellence in the physical environment (including waiting area), information provided, scope for patient control over the actual procedure and informed consent.
That’s what we could do. Whether I can get my past my own stuff, even far enough to liaise with a colleague about them taking this on, is another matter.
At least you don’t have to contend with bears breaking into the hospital, like they have to in Romania!
http://www.ananova.com/news/story/sm_2517311.html
Stunning news from America. Police are using stun guns on psychiatric patients!! Here’s what the Taser website says about its top of the range device:
The TASER X26 uses a replaceable cartridge containing compressed nitrogen to deploy two small probes that are attached to the TASER X26 by insulated conductive wires with a maximum length of 35 feet (10.6 meters). The TASER X26 transmits electrical pulses along the wires and into the body affecting the sensory and motor functions of the peripheral nervous system. The energy can penetrate up to two cumulative inches of clothing, or one inch per probe.
Nice. We’re thinking of diversifying into a new range of protective clothing for our American co-loonies, consisting of three ‘cumulative inches of clothing’. Also helpful for those cash-strapped hospitals which are having to cut down on ward heating.
There’s a Jewish version of April Fool’s jokes at the festival of Purim. That was months ago, so the following is not a parody. Unfortunately. The Associated Press report that:
- Juveniles were shocked by stun guns once in 2003, twice in 2004 and once each in 2006 and 2007. All but one of the incidents occurred at Brattleboro Retreat, a private psychiatric hospital where police have been called to help with out-of-control patients.
– On several occasions, officers have drawn Tasers but not shot them because suspects suddenly complied with orders when faced with the weapons.
Of six Taser incidents involving juveniles dating to 2003, five were at Brattleboro Retreat and four resulted in patients being shocked with the device, according to the records.
Mental health advocates and others are disturbed by those numbers.
“Our feeling is that there should be other ways of handling situations that require de-escalation,” said Ed Paquin, executive director of Vermont Protection and Advocacy, Inc., a private not-for-profit agency that protects civil rights and human rights of people with disabilities.
“It’s rare or almost never that the Vermont State Hospital calls in an outside entity, and they handle folks that are of greater intensity or difficulty than the Retreat does,” he said.
Ken Libertoff, executive director of the Vermont Association for Mental Health, said his organization wants a moratorium on Taser use on minors.
“It should not be acceptable to use a Taser on a child in treatment,” he said. “It’s time for a public conversation about how to de-escalate situations so that we don’t have need for calling in the police.”
The names of the people who were shocked with Tasers weren’t released. According to a summary sheet provided by the Brattleboro Police Department, the behavior that precipitated the Taser deployments included assaulting police, threatening to commit suicide, self-mutilation and destroying property.
“We never plan on calling the police,” said Peter Albert, director of external affairs for the hospital, a private facility specializing in psychiatric and substance abuse treatment.
“The police are never part of any treatment plan intervention. We call the police when it’s deemed to have moved from a clinical crisis to a simple matter of safety,” he said.
Where to start with that? Using electrical shocks on mentally ill children in a psychiatric hospital?! Using them on people who are suicidal??!! Truly outrageous. And who’d have thought it from the country that created The Simpsons, hot fudge sundaes and lesbian softball leagues? (Oh. Well, they did also create the invasion of Iraq. Not an outstanding humanitarian triumph.)
To read the full gory details:
http://www.boston.com/news/local/vermont/articles/2007/09/08/police_records_show_how_and_when_cops_used_tasers/?page=1
There doesn’t seem to be a way to email the American Embassy in the UK, but you can ring them on 0207 499 9000. They’ll probably be pleased to hear someone furious about something that doesn’t include the words ‘civilian deaths’ or ‘unjustified imperialism’.
Alternatively, go straight to the top and try emailing Dubbya. The White House website says:
Please send your comments to comments@whitehouse.gov. Due to the large volume of e-mail received, the White House cannot respond to every message.
But Bright does so do let us have your comments! And we have an unblemished record of not invading and occupying other people’s countries.
New York City’s spooky looking and pre-post-modernly-ironically named Bellevue Hospital has diversified into book publishing. Not worthy tomes about exotic mental illnesses, but novels and other books ‘about the human condition’.
http://www.msnbc.msn.com/id/20361951/
Star Wards is planning a book project – Book Sanctuary, which we hope to run in partnership with the Arts Council. Perhaps we should think beyond books to read or look at and encourage hospitals to consider ones they create and publish? The energy and creativity of Star Wards’ members continually dazzles me so I wouldn’t be surprised if small hospital publishing houses start springin up all over the place.
A nice piece from Qatar, but could have been from Kettering, about a mass volunteering exercise. Involving local businesses is a good idea because:
1. employees are also neighbours, service users, carers….
2. having volunteered time, businesses are likely to be much more interested in and commited to the hospital and might go on to donate money
http://www.thepeninsulaqatar.com/Display_news.asp?section=Local_News&subsection=Qatar+News&month=July2007&file=Local_News200707313216.xml
What do Mao and geese have in common? Star Wards! I’ve been asking friends why they think that Star Wards has grown so fast and has unleashed such amazing energy and creativity. Richard Garside,
http://www.kcl.ac.uk/depsta/ppro/experts/expert/727
Bright’s chair but better known as a leading commentator on criminal justice (also known by what my mate Sarah refers to as as having “a brain the size of the planet”) said it’s Maoist. “Like the Let a Hundred Flowers Bloom campaign but without the execution of intellectuals.” I’d always thought that Percy Thrower had invented the concept of Let A Thousand (sic) Flowers Bloom. But no, it was the man responsible for millions of bicycles, snazzy suits and state murders. Intriguingly, we have inadvertently emulated some of the features of Mao’s approach to local change, at least in the initial stages of the Flowers’ campaign. He believed in setting out general principles centrally and then letting local people determine how best to implement these. (We’ll of course avoid the sharp reversal of the openness of Mao’s campaign, which resulted in the savage persecution of intellectuals who had been encouraged to criticise the official regime.)
A gentler comparison without a nasty ending was provided by my much-loved pal Phil Dourado. www.phildourado.com. Phil has just pre-launched what is likely to become an Internet sensation for leaders – the Leadership Hub. the world’s first online collaborative leadership development community.
www.theleadershiphub.com. Equally awe-inspiring is Phil’s role as a carer for his wife, Sandy, who has Huntington’s Disease. Sandy has written an amazing book about her experience of living with this devastating illness, and if you only read one book this year, or decade, read this one. Each chapter is written by a different member of the family, and if you only read one book chapter this year/decade, make it Danny’s. At 15 he has produced one of the wittiest, most insightful, courageous, compassionate and articulate pieces of writing I’ve ever seen.
http://www.phildourado.com/hdbook/
Phil and I have just come back from one of our regular city breaks, this time in Oslo. We were wandering happily in the opposite direction to our target destination of the Nobel Peace Museum. (Did you know that the Norwegian word for Peace is Fred? No, nor did we.) Either of us could lead an ambitious new social movement, but neither of us could find their way to the corner shop. We were chatting about Star Wards and Phil pointed out that it has the characteristics of a ’self-organising system’. He illustrated this with a description of water falling down a hill and eventually forming a river. But apparently flocks of geese or cranes also apply the same principles of ‘emergent behaviour’. “An emergent behaviour or emergent property can appear when a number of simple entities (agents) operate in an environment, forming more complex behaviours as a collective.”
http://en.wikipedia.org/wiki/Emergence
In other words, the sum is much greater than the parts. The wonderful Wikipedia (itself a fab example of emergent behaviour, with individual contributors creating the ultimate people’s encyclopaedia) points out that “In some cases, the system has to reach a combined threshold of diversity, organisation, and connectivity before emergent behaviour appears.” A nifty description of what Star Wards aspires to.
I’ve rather unwittingly got involved in issues around safety on wards. It’s pretty obvious that when patients have something constructive to do during the day and good relationships with staff and each other, the number of violent incidents is going to be minimised. This is confirmed by research – including the results of a survey of wards participating in Star Wards. 50% reported a reduction of violent incidents as a result of their involvement in the project.
It’s strange, and risky, writing a blog because it feels private but is the opposite. But I’ll stick out my emotional neck (?) and say that I find all this stuff very upsetting. I’m not at all bothered at the prospect of being clobbered by another patient. It’s the staff reaction to violence that freaks me out. In particular, ‘rapid tranquilisation’ – i.e. being forceably injected. But this feels almost mellow compared to practices in continental Europe. It turns out that they use the alarmingly named ‘mechanical restraints’. All sounds very Heath Robinson but is actually very low-tech. And ghastly. Being strapped to the bed, sometimes for hours. Left alone, in some hospitals in rooms whose sole purpose is to have patients strapped to beds. Aaarrgghh!
I went to Italy for a conference and planning gig of a European project. Italy is celebrated for passing a law in 1978 closing all of its psychiatric hospitals. These have been replaced with community services and not very many acute admission wards in general hospitals. I visited one of these and was told that thre are no activities for patients and no nursing plans. Patients are only there a short time (about 7 – 10 days) but it still contrasts strongly with what happens in the UK.
So I’ve returned full of gratitude and relief for the prevailing ethos and practices of our acute wards.
There’s a lot of preciousness about using ‘ordinary’ language about mental illness.
Journalists are regularly lobbied about words like ‘psycho’, ‘nutter’ etc
There’s a great article by Jo Brand, looking at the origin of some of these words and also at what some users/survivors think about them:
http://www.guardian.co.uk/g2/story/0,,2074299,00.html
I think that, like all language (spoken and perhaps especially non-verbal) it all depends on context, including who is using it. Not too many people flinch when I refer to myself as a lunatic. I think friends are rather relieved – that I’m relaxed enough to call myself this, and that they don’t need to be incredibly careful about how they talk about my illness. My psychiatrist/therapist sometimes responds to things I say with “Well, that’s just mad” and I enjoy the normality of the comment and it also makes a stronger impression than a technical interpretation might do. These are obviously contexts of trust and empathy.
While I wouldn’t warm to this sort of term being used with hostility, nor would I welcome any other terms! So if someone is trying to discredit me or something I say by referring to me being a ‘nutcase’, it wouldn’t really be any different to them saying “You would think that because you’ve got borderline personality disorder with accompanying dissociative states.”
Mainly, I like normal terms for madness because it makes me feel less stigmatised. (Not that I do feel stigmatised anyway…) People refer to themselves or others who aren’t mentally ill as ‘deranged’, ‘loopy’ etc. So they’re not just terms, or conditions, for those of us who have a diagnosed mental illness.
Unlike the service users in the article, I’m not anti-diagnosis. I’m anti excessive or inaccurate diagnosis, but as with all medical conditions, appropriate diagnosis can be essential in enabling us to understand what we’ve got, how we might have got it and, crucially, what we can do about it.
There are times, however, where the hostile use of common terms for madness is inexcusable. The best known example was The Sun’s front page ‘Bonkers Bruno’ headline when Frank Bruno was hospitalised. This prompted massive, hostile response from Bruno admirers and The Sun changed it in subsequent editions that day, apologised and carried out various other acts of penitence. The incident highlights some of the main features of unacceptable use of ordinary terms for madness, in addition to crude and hostile intent/impact:
1. being very public
2. attacking someone who at least in this context is vulnerable
3. the person has no immediate, equivalent way of responding/retaliating
4. the context of the comment, in this case an article, does nothing to undermine or challenge or prove the parody of the term
But in everyday, benign situations, I find it reassuring and humorous to be called barmy. Especially if the person using this term knows that I actually am.
When Patricia Hewitt gave a speech at the recent Mind conference she must have been bracing herself for lots of angry questions about the Mental Health Bill. But, amazingly, this issue wasn’t raised til right at the end of the Q&A session. Instead, there were question after question about the government’s apparent obsession with cognitive behavioural therapy. Delegates were scathing about this being further emphasised, or narrowed, by the innovation Hewitt had proudly announced – CBT online. Delegates pointed out that however useful CBT is, it can only address some mental health issues and other therapies are much more effective for other experiences.
I’m fortunate to have a rather niche psychotherapy – mentalisation based therapy, which has been designed for people with borderline personality disorder. Before my mental illness got really out of hand and I was sectioned, I’d been having CBT from a brilliant therapist. But I got worse and worse. I was amazingly lucky that the hospital, St Ann’s in north London, has one of the country’s leading services for people with personality disorders, the Halliwick Centre. And even more fortunate that Anthony Bateman agreed to take me on as his patient. Prof Bateman and his colleague Peter Fonagy have written a compelling article about how the wrong sort of therapy for people with borderline personality disorder can not only be ineffective but actually damaging:
http://bjp.rcpsych.org/cgi/content/full/188/1/1
Let’s hope that Patricia Hewitt does go back to the Department and reconsider the proposition that a blanket application of CBT is good for all people with mental health problems.
