Archive | October, 2015

Banned by the BMJ

29 Oct

Sing “Banned by the BMJ” to the tune of “Born in the USA” by Bruce Springsteen (click on the picture for link to the song)

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Removing references to forced treatment, seclusion and post-traumatic stress disorder, and links to patient blogs describing experiences of poor care, is to reduce a piece on coercion in psychiatry to a sanitised grumble about poor food, thin curtains and the wrong type of tea.

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This afternoon, I was informed by the British Medical Journal that, despite us having worked on the piece (commissioned by the BMJ) since September, it would not be published in the 7 November issue without the following deletions:

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DELETION 1

“… and avoid being assaulted. I was repeatedly medicated by force. I have since been diagnosed with post-traumatic stress disorder.”

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DELETION 2

“I was repeatedly subjected to forced treatment, as a first resort. I was locked in seclusion with no water, no food, no access to a toilet and no contact with the outside world, without even my glasses or shoes.”

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DELETION 3

“If patients can’t go elsewhere for medical advice because they are locked up and the law gives staff the right to use force, there’s no need to hone these skills.”

[The skills referred to in the preceding sentence are “engagement with patients and persuasion”]

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DELETION 4

Ref 1. – Smoking and psychiatric wards – Georgia Rambles blog, Dr Georgia Belam @GeorgiaBelam (30 September 2014) https://georgiarambles.wordpress.com/2014/09/30/smoking-psychiatric-wards/

DELETION 5

Ref 3. – Do you remember your first time? – Sectioned UK blog (16 November 2014) https://sectioneduk.wordpress.com/2014/11/16/do-you-remember-your-first-time/

DELETION 6

Ref 4. – A smoking ban for mental health workers in the workplace – Nurse With Glasses blog, @nurse_w_glasses (15 November 2013) http://20commandments.blogspot.co.uk/2013/11/a-smoking-ban-for-mental-health-workers.html

DELETION 7

Ref 5. – Smoking – Wardipedia, a World of Ward Knowledge, @WardipediaNews http://www.wardipedia.org/21-smoking/

DELETION 8

Ref 6. – How can psychiatric wards become better, healthier places? – Sectioned UK blog (26 October 2015) https://sectioneduk.wordpress.com/2015/10/26/how-can-psychiatric-wards-become-better-healthier-places/

DELETION 9

Ref. 7 – On the ward – abuse in the mental health system – Schizoaffected3 blog, @schizoaffected (27 June 2015) https://schizoaffected3.wordpress.com/2015/06/27/on-the-ward-abuse-in-the-mental-health-system/

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My piece is about coercion in psychiatric care. The  The BMJ would only permit me to refer to my experience as a psychiatric inpatient in the following terms:

“I am very much in favour of making psychiatric wards healthier and bringing about sustainable improvements to patients’ health. When I was fragile and detained, the ward environment was toxic. Food with no fibre, poor sleep hygiene measures, no access to exercise or fresh air, no therapy and nothing to do except sit round eating biscuits and drinking coffee [DELETION 1] [DELETION 5] There was no smoking reduction or cessation help avaiable. There is a great deal of scope for psychiatric hospitals to make wards healthier.” The BMJ would permit me to say, “Patients experience wards as coercive, not therapeutic.” However, the link to the blog post of @schizoaffected (reference 7) in which she describes her experience of a psychiatric ward, was to be deleted.

I was told I could not mention my personal experience of forced treatment unless the staff involved had been prosecuted. That’s akin to telling someone who’s been sexually assaulted that they cannot detail their own experience unless their attacker has been prosecuted. Expecting psychiatric patients harmed by poor services to prosecute staff before they can detail their own experiences is too high a bar for most of us to ever reach.

Removing the reference to use of forced treatment; removing the reference to post-traumatic stress disorder; removing the reference to having been held in seclusion with no food or water, no access to a toilet and no contact with the outside world, without even my glasses or shoes; removing links to two patient blogs describing our separate experiences of poor care; is to reduce a piece on the coercion that runs through psychiatry like words through a stick of rock to a sanitised grumble about poor food, thin curtains and the wrong type of tea.

To strip out a referenced blog piece written by a London psychiatrist; a piece by a community psychiatric nurse about a smoking reduction course; a well-known ward resource for inpatient psychiatric wards; and a collation of tweets where patients share how wards could be made better; is farcical. It smacks of inexperience, laziness or stultifying caution.

The justification for these deletions is that, the BMJ claims, I will be identifiable at the Maudsley public debate; that staff on the ward where I was detained may be in the audience; that they may recognise me all these years later; and that the NHS trust responsible for the ward where I was detained could sue the BMJ for libel. To try to accommodate those concerns, I offered a number of different forms of alternative wording. I offered, in place of the deletions, the phrase “BMJ legal advice says I may not refer in this article to other experiences on ward or the impact it has had on me.” I offered to sit on the panel wearing a face mask. I offered to sit in the room next door to the lecture theatre – the room where a patient can sit if their case is presented to doctors or medical students and speak via video link – and participate in the debate via video link with my back to the camera. BMJ refused. It was the deletions in their entirety, or nothing.

As a result of the BMJ refusal, my piece will now not be published in the upcoming issue. Happily, however, within half an hour another journal had agreed to publish my piece (slightly edited for length), as well as invite me to comment on an upcoming editorial on a related topic. Writing the piece has forced me to think well in advance about the issues I should focus on at the debate and has hence been good preparation. It has not been wasted effort.

However, it has been an upsetting episode. I was shaking with anger earlier. It has felt as I were being silenced; as if my own descriptions – brief as they were – of what was done to me under the guise of “care” – were being sanitised from the scene, buried, denied. As if coercion in psychiatric care is so entrenched as to be unmentionable. Reflecting on what I was told of the legal advice given to the BMJ and the BMJ’s refusal to consider my suggestions, it seems clear to me that stigma and prejudice against people with mental health problems has played a part. People with mental health problems are often considered unreliable witnesses to our own experiences. We are not believed. The more we insist something is so, the more extreme our experience seems to be, the more – as in this case – it appears to deviate from the accepted picture of what care on a hospital ward should be like, the more our credibility with others appears to be undermined. Tell an extraordinary tale as a mental health patient and it will be seen as a tall tale. The BMJ and the barrister they consulted didn’t, it seem, consider they would have any defence in the unlikely event they were sued: after all, I’m just a mental patient.

As I wrote in this piece, it seems that, on the one hand, professionals want to be seen to be listening to diverse voices; and yet, on the other, they aren’t prepared to make any accommodations that would make invitations meaningful. Write like a doctor. Fit in this square expert-by-profession-shaped hole even if you’re very much an expert-by-experience round peg. Don’t frighten the horses with your personal experience of brutalising inpatient hospital care. The BMJ will not be shining a light on the realities of coercion in psychiatry for the benefit of a diverse range of doctor readers. I wonder what will appear on those two pages instead.

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Update smallClick on the pictures below to link through to the blog posts or Storify stories of tweets

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  1. BMJ refuses to print article ahead of smoking ban debate -  Velvet Glove, Iron Fist blog - Christopher Snowden (30 October 2015)

    BMJ refuses to print article ahead of smoking ban debate – Velvet Glove, Iron Fist blog – Christopher Snowden (30 October 2015)

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Reactions on twitter & conversation with the lovely twitter people (from 30 October 2015)

Reactions on twitter & conversation with the lovely twitter people (from 30 October 2015)

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Conversation with Simon Wessely (Storify story of tweets) (30 October, 01 November)

Conversation with Simon Wessely (Storify story of tweets) (30 October, 01 November)

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Tweets follow the discovery that the BMJ had hired a doctor unrelated to the debate to write a piece instead. (Storify story) (02 November)

Tweets follow the discovery that the BMJ had hired a doctor unrelated to the debate to write a piece instead. (Storify story) (02 November)

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Recovery In The Bin

BMJ Censorship Complaint – by RITB, 25 March 2016

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Banned by the BMJ (1) 

 

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How can psychiatric wards become better, healthier places?

26 Oct
llustration by Karolin Schnoor for The Pool

llustration by Karolin Schnoor for The Pool

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How can psychiatric wards become better, healthier places? Your suggestions please! What would make a difference to your experience of inpatient psychiatric care? What would make it more therapeutic? What would make wards healthier, better places – whether that’s a small tweak or more substantial changes?

I’d like to hear especially from mental health patients who’ve spent time on a psychiatric ward, but all suggestions are welcome including those from staff and carers: we all share the ward environment together, after all. This isn’t just about giving patients a “nice time” on ward but about making wards healthier – and produce better health outcomes for people.

Format of this blog post:

  1. Tweets from the lovely twitter people about how to make wards better, healthier places
  2. Patients can experience wards as untherapeutic, even coercive, places
  3. Resources on making wards better, healthier places
  4. Writing by others on this topic

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1. Tweets where people share what they think would make wards better, healthier places:

Storify stories:

Selection of some tweets from those Storify stories:

.JudgeMental BsC making wards betterSuper Chow Chow making wards betterS B Hart Smith making mental health wards betterLeah making wards betterSevultra making mental health wards matter

Holly McCormack making mental health wards betterSchizoaffected making wards better (3)bc making wards better

Simply Positive making mental health wards betterCombat PTSD Angels UK making mental health wards betterNeil OooOooo White making mental health services bettersoniamaya81 making wards betterDan Beale Cocks making wards betterNicky Taylor making wards betterFoxie making wards betterk l parr making wards betterGeorgia Belam Lancet Psychiatry making wards betterReuben Bainbridge making wards betterJ L making wards better

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2. Patients can experience wards as untherapeutic even coercive places:

Flathooves making mental health wards betterSchizoaffected making wards better (2)Left Loon making wards better

However, shining a light only on poor experiences in psychiatric care isn’t enough to bring about positive changes. It’s not enough for staff and services to know what to leave behind: they also need to know where to head towards. Please help me share with others your views of how inpatient wards can become better, healthier places.

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3. Some resources on making wards better, healthier places:Code of Practice MHA illustration

  • Code of Practice to the Mental Health Act (January 2015)
  • Do the right thing: How to judge a good ward – Ten standards for adult in-patient mental health care – Royal College of Psychiatrists (June 2011)
  • Mental Health Advocacy and Human Rights: Your Guide (2013) – British Institute of Human Rights
  • NICE Guidelines (December 2011) – Service User Experience in Adult Mental Health – improving the experience of care for people using adult NHS mental health services (Clinical guidelines CG136) – “This clinical guidance offers evidence-based advice on ensuring Do the right thing RCPsycha good experience of care for people who use adult NHS mental health services.” These are the standards to which to hold NHS care providers.
  • Star Wards – Strapline: “Inspiring inpatient care”. Set up by Marion Janner (Twitter @starwards) – to promote excellence in inpatient mental health care. “75 practical, mainly low-cost & easy to implement ideas form Star Wards’ core, but our role is increasingly as a catalyst to change through inspiring, collecting and disseminating best practice in inpatient care.”
  • Twenty Commandments for Mental Health Workers by Nurse with Glasses (Twitter: BIHR mental health advocacy guide@Nurse_w_glasses), a Dutch community mental health nurse. Take a read, as she says, “because it’s not always as self-evident as we want it to be”.
  • Wardipedia“A world of ward knowledge”, the website from Marion Janner (Twitter: @starwards). “Welcome to Wardipedia: a collection of ideas, examples, information and research about therapeutic mental health inpatient care.” (Twitter: @wardipedianews)

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4. Writing by others on the topic of how to make ward experiences better:

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140 characters

20 Oct

I’m a tweeter. I tweet a lot. I’m always banging on about one thing or another on twitter – usually myself or about some piece of news that’s randomly floated across my twitter feed and fired me up. There are lots of subjects I tweet about. Here are some of them, in no particular order

  • Section 136, the useful police power to take someone they find in suspected mental health crisis in a public place to somewhere safe for mental health assessment; but which, due to a variety of reasons including lack of NHS “places of safety” (136 suites), especially for children, can mean people end up in police cells for hours or even days. I want the use of police cells to be banned outright to force the NHS to take people the police suspect are in mental health crisis (there would rightly be an outcry if police were expected to take people they suspected had a broken leg to police cells to wait for a doctor to come and assess them) and to limit this power to 6 hours, which is always going to be enough time for the police to drive someone they suspect is in mental health crisis to a healthcare venue and  hand them over to medics.
  • What I’ve called “pill shaming”, which is the underlying anti-psychiatric medication message that pervades mainstream
    Pill shaming bingo card

    Pill shaming buzzword bingo card

    media stories about about mental health written by journalists, commentators and therapists. Varios facets include taking medication is a weakness; all mental distress is psychological and therefore psychological means should be used to overcome it; and so on. There are also th anti-psychiatric medication messages from people who might be called ‘anti-psychiatry’ or ‘critical psychiatry’. This seems largely based on fears from the US insurance-based healthcare system and diagnostic categories, as well as of a USpharmaceutical industry that can market direct to the public, and of course US Scientology. These can be scary and vocal groups who hound people who speak up against stigma and discrimination – the scaremongering and pill-shaming on the #MedicatedandMighty hashtag was a recent example. Stigma about mental health problems stops people from seeking the help they need and harms real people’s lives. Shaming people and making their personal medication choices into some sort of public moral matter does the same. Pill shaming must be challenged. I use the hashtag #pillshaming.

  • The “headclutcher”, those standard pictures trotted out by picture editors whenever there’s a mental health story and
    'Head clutcher' montags

    ‘Head clutcher’ montags

    which consist of someone in lonely isolation, typically with their head in their hands. I was tickled pink to be part of the development of Time to Change’s brilliant new (and still developing) free online library of pictures for use in mental health stories, Get the Picture (#GetThePicture). It’s a welcome development and something that can be pointed to whenever a head clutcher picture is used. I tweet on the hashtag #headclutcher.

  • Halloween, when all the stereotypes about people with mental health problems being unpredictable and potentially violent that float around in the general public and media, as well as scary representations of what psychiatric hospitals are like, suddenly turn into a seasonal industry, Ridiculing and demonising people with serious health conditions for fun and profit isn’t about ‘offence’, it’s about harm – the real harm that is caused to real people’s lives every day. It’s a pretty despicable practice, but one thing I do notice since the big #AsylumNo campaign challenging Thorpe Park’s scary mental patient horror maze Asylum 2 years ago is that now businesses respond more quickly, and generally favourably. The challenges still need to be made, but there seem to be fewer, as well as fewer people who then want to put their resources into defending this discrimination in this way. Good news – but no cause for complacency.
  • Human rights, which mental health folks sorely need, but which seem too often to be ignored entirely by human rights organisations – that is,  unless we fall into one of their existing favoured categories like people in detention. There’s enormous scope for use of human rights arguments for people with mental health problems, whether that’s use of force or voting rights or taking away people’s phones on inpatient wards or the new Code of Practice to the Mental Health Act, even if most human rights organisations aren’t interested. I’m a big fan of human rights.
  • Use of forced medication, restraint and seclusion in psychiatric wards and how in some places this has become routine, a first line of attack rather than a final line of defence. So far as I know, the only nationally-collated and reported statistics in mental health are the annual report on deaths and self-harm – purely physical measures in supposedly mental health care. I want use of any form of coercion to be nationally collated and reported annually so that pictures of best practice can emerge and so we can know where places of bad practice exist.
  • Stigma, stigma, stigma – the negative assumptions about people with mental health problems that come up again and again.
  • Use of terms related to mental illness as metaphor, as insult, to emphasise disapproval – “crazy”, “fruitloop”, “loon”. Use of mental health terms this way reinforces negative associations and harms real people.
  • The difficulties in accessing good, timely mental health care. My own experience if of toxic coercive ‘care’ in hospital followed by neglect in the community. Parking me on welfare benefits and meds without any other form of help and support has simply compounded problems which, with proper help and support, could and should have seen me back in work within months. It’s a false economy. Here I am, over four years out of hospital, still waiting for treatment and support which cutbacks to historically under-funded services make less likely to be forthcoming as every day passes.

I’m always talking about these subjects on twitter. It suits my short attention span and lack of concentration and focus and the fact I have no editor to help me polish my rambling thoughts into something more ordered and punchy. Sometimes (rarely) when I have time I save my twitter conversations in Storify. Sometimes (more rarely) when I have time I stick a link to a Storify story on this blog, with the intention (rarely achieved) of writing it up into a blog later. Sometimes I write a blog piece and (even more rarely) I’m able to publish it. But mostly, mostly my writing is on twitter. That’s where my work is. That’s where my scattered thoughts are. There are a lot of them. But they don’t often make it onto this blog.

I find twitter suits me. I don’t see the 140 characters as a limit but a discipline, a spur to be succinct, an enabler of freedom that only requires me to keep focus till the end of the sentence. And in any case there’s no rule that I can only tweet once: I treat a tweet as a sentence in a paragraph, often linking tweets to make that more explicit. There’s no reason complex thoughts and concepts can’t be expressed on twitter, even if, as in my case, there isn’t any planning beforehand.

I get invitations to write for this journal or that publisher, to take part in this debate or that consultation, but twitter’s where I’m most at home. Writing in more than 140 characters can be a struggle.

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