Hopefulness

I’m a little bit in shock. I’m still not sure how to put it. It seems too good to be true. It’s taken nearly 3 years to be able to say this:

I’m being seen by a psychiatrist who seems to relate to me as a human being, wants to get to know me as a person and work with me in partnership.

What’s puzzled me so far is why all the psychiatrists I’ve seen haven’t been like this. I know they’re intelligent, caring professionals. So it’s been a genuine puzzle to me why the mental health care I’ve received so far has been so bad or inadequate, and in so many different ways. It’s one thing having one bad experience of care: it happens. But for it to happen repeatedly, with different professionals? It’s a puzzle.

I had no idea that, two years after joining twitter, I’d still be banging on about bad experiences of care. (It’s not because I like them!). I never thought I’d still be going on about what was done to me in hospital. (I’d much rather have had treatment for the resulting PTSD.) I never imagined I’d still be moaning about my bad experiences of community mental health care. (I thought I’d learn how to work the system to get what I needed.)

In fact, just so you know, I don’t do nearly as much moaning on about my supposed “care” as I could. (It would sound way too negative!) I’d summarise my experience of mental health care as having been brutalised, traumatised then parked on welfare benefits and sedating meds. Mental health nurses & doctors who’ve treated me so far have been akin to veterinary staff: they’ve observed, diagnosed and neutralised me.

Non-medically trained staff have related to me with humanity. But, ultimately, they’ve all had to defer to the doctors and nurses. It’s almost as if mental health training gets in the way, prevents staff from seeing the human being experiencing human distress right in front of them.

Does training prevent health care professionals from seeing that what’s in front of them isn’t a diagnosis but is a human being experiencing distressing symptoms? Is the human experience so broad and varied that mental health staff steel themselves to stick rigidly to assigned roles and designated boxes?

Let’s be clear. When I’m in mental distress, it’s not about mental health staff being “nice” to me. It’s not about them being my mate. I don’t need a new friend.

I need a competent professional who’ll work with me in partnership: I’m the expert in me; they’re the expert in mental health care.

No matter how unwell someone is, they’re still a person with thoughts, feelings, quirks, preferences, friends, family and a life to return to. They’re not a puzzle to be solved, a problem to be fixed. They’re a human being, not an animal.

I want to be able to write about good psychiatric care, I really do. I have a vested interest, after all! It’s just not been my experience. I’d much rather have been able to write about fantastic treatment by great nurses and doctors; and about how much better I was in myself. I’d even have settled for half decent care and a bit of respect, mediocre care with a modicum of interest. What I got instead was damaging.

I have seen excellent psychiatric care elsewhere: caring, effective, transforming treatment and support. (Though still with no talking therapy.) I’ve just not received it myself. The comparison is bitter sweet.

Is now my time? Am I on the threshold of receiving effective help? Can I get excited about it yet? Am I on my way to living a full life? I’m not silly. I’m not going to pin all my hopes on one busy professional “fixing” me. I know it doesn’t work that way. But … I feel a sense of anticipation.

I’m hopeful the new psychiatrist and I can come up with a plan that will achieve good results going forwards. I’m hopeful the plan we come up with will include meaningful support and help going forwards, so I’ll be able to get back on my feet. And, this time, it feels as if my hopefulness could be a realistic. I’ve been getting by on wishful thinking for too long.

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• Collated tweets (Storify) – My tweets (and some initial responses from the lovely twitter people)
• Twitter conversations – Responses and conversations with the lovely twitter people (these are really interesting – take a look!)

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Starting a family when you have a mental health diagnosis: unfit to be a mother?

Photo by Bicycle Bill

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Scroll down to the web links section for links to all the coverage & commentary on the Essex forced caesarean & adoption story

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On starting a family when you’re managing a mental health problem: reality and scare stories

Earlier today, a story about a mother with a diagnosis of bipolar disorder broke which was so utterly grotesque that it has caused a storm of protest on twitter and elsewhere. Questions are to be asked in the House of Commons. Although so far we only have a story reported in the Telegraph newspaper (based on incomplete information), there appear to be 2 main aspects. These fall into familiar media narratives:

1. “Evil social workers steal our children.” And, in this instance, rip a baby from it’s mother’s womb in an enforced caesarean the mother didn’t know about till she came round to find the scar in her abdomen. As reported in the Telegraph, a woman with a diagnosis of bipolar disorder, visiting the UK for two weeks from Italy, was sectioned and taken to a psychiatric hospital. Without informing her, social workers went to court and a judge made an order that a caesarean section could be performed on the woman and the baby taken away. Without warning, the woman was forcibly sedated and, when she woke up, a caesarean section had been performed on  her and her baby removed. She has never seen the baby.
2. “Women with mental health problems are unfit mothers.” The Telegraph reports that, subsequently, the mother went to court to seek the return of her baby. The judge decided against returning her baby because – despite the fact she was currently well – he said her lifetime risk of relapse meant she was an unfit mother.

There are other troubling aspects to the news story too, but these are the two that relate to mental ill-health. I comment below on these aspects. In summary:

1. We don’t yet know all the facts around the caesarean section in 2012. It seems so grotesquely barbaric and traumatising that there must be more to it. A c-section is a medical matter, not one for social services. Other seemingly plausible explanations have been put forward and what’s been reported doesn’t ring true. Court of Protection cases are not routinely reported, so we may never see the judgment in this case and the local authority involved may be unable to comment. The main source of information for media coverage is the original Telegraph report, which is based on information provided by only one source (the mother’s solicitor). As a comparison, the Telegraph report refers to a “panic attack”, whereas other commentary refers to a psychotic episode. And the Telegraph story is  written by a journalist who has been criticised for writing misleading court reports in pursuit of his cause. He is a journalist with an agenda. At best we can say for certain that the information we have is incomplete.
2. As written, it appears that the fact that the woman had a diagnosis of bipolar disorder was the judge’s justification for refusing to return the child to its mother.  This is appalling. This – and the real problems women managing mental health problems face in accessing the support they need – are the real issues for debate.

This scare story contrasts sharply with the reality of women’s experiences of managing a mental health problem and wishing to start a family (for instance this by Erica Camus, 33, diagnosed with paranoid schizophrenia and contemplating whether she can become a mother; or these comments by Seaneen Molloy, in her twenties, diagnosed with bipolar disorder and also wishing to become a mother).

Many women’s mental health problems will start during child bearing years – so there are a lot of us affected. Women and couples make decisions every day about sex, contraception, psychiatric medication and abortion. With so many of us living this reality daily, the real conversations should be about the following issues:

• The provision of supportive mental health care in partnership with women, so they don’t fear asking for help in case they risk losing their autonomy or children
• The provision of sufficient specialist maternity mental health services, both outpatient and inpatient, so mother and baby or babies can be cared for together, no matter how unwell the mother is  (it was recently reported that, “Only 50% of areas have any kind of specialist perinatal mental health services“)
• Ensuring worst case scenarios are planned for in advance, in partnership with the woman (to hopefully reduce the risk of such heartbreakingly sad events as the deaths of Daksha and Freya Emson)
• Researching the effects of psychiatric medications on unborn babies (this research project is currently recruiting women participants for a study on pregnancy and antipsychotic medication)

Let’s hope that the furore generated by this seemingly sensationalised scare story provides a window of opportunity to discuss these real issues women face daily. And let’s hope that women who are wrestling with these very issues now will not decide to have a termination, or to not have children, or to not seek help with mental health concerns as a result of such scare stories.

Allesandra Pacchieri with her youngest daughter, Baby P (Daily Mail, 4th December 2013)

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Here are my thoughts (tweets edited only slightly due to the lateness of the hour) in response to the initial Telegraph story:

The Telegraph reports that a judge ordered – without even telling her – that a mother could be forcibly sedated & her baby delivered by caesarian section then taken. And that a new judge has ruled that a bipolar diagnosis – just the diagnosis – makes a mother unfit to have her child with her.

Can you imagine a mother with Crohn’s disease who experienced a relapse being forcibly sedated and having her baby removed by secret caesarean? Just like bipolar disorder, doctors diagnose Crohn’s as a lifelong relapsing and remitting condition. At times of relapse, a parent with Crohn’s may be unable to take care of their child. Would anyone say that a mother with Crohn’s was, by virtue of that diagnosis alone, unfit to keep her child just in case she relapsed? No. That judgment seems reserved for those of us with a mental rather than physical health diagnosis.

My impression is that society, doctors and the courts infantilise women who are pregnant. And that certainly happens to people with mental health problems. That’s a double whammy for pregnant women who are managing mental health problems if their case comes before a court.

One question that arises in reading the Telegraph story is where was the perinatal psychiatric service? The point of perinatal psychiatric services is to support mothers through pregnancy and delivery. Since pregnancy is linked to bipolar relapse, it’s all the more important for women to get proper perinatal psychiatric care. That doesn’t seem to have been the case with this mother, though there is a perinatal psychiatric service in Essex.

However, the scary message from these two legal cases, as reported, seems to be this: if you have a bipolar diagnosis, you shouldn’t tell anyone that you’re pregnant because, if you do, you could lose your baby. That you should steer clear of mental health services at all costs.

Wouldn’t a better message be that, if you have a bipolar diagnosis and you want to become pregnant, you should get in contact with a perinatal mental health service so you can plan the pregnancy? Wouldn’t a better message be that, if you’re already pregnant, you should make contact with a perinatal mental health service so they can support you during and after your pregnancy? Wouldn’t a better message be that, if a woman gets a bipolar diagnosis – or any other mental health diagnosis – she is still a full human being. She is not merely a womb. She is not merely a piece of meat to be sedated and sliced open without her knowledge. She is not merely a risk to children. She is a full human being.

At the moment, we know only a partial view of what has happened. The report is based on instructions the mother gave her solicitor. We don’t know why the caesarean was performed. There must have been some medical reason. We are told that the mother wasn’t warned about the planned caesarean and that the child was taken away without the mother seeing it. We are told that the child hasn’t been returned to the mother for the apparent reason of the mother’s bipolar diagnosis and therefore possibility of relapse.

Let’s hope this is just some really, really badly reported media story that’s actually a bit dull. That would be better than the alternative. It will be interesting to see what comes of this story when it’s reported fully. I wonder if either journalist has relevant expertise. I wonder if either has form for whipping up a storm of controversy for a story that turns out to be far more straightforward.

But basically, if you’re a woman with a bipolar diagnosis, you’re an unfit mother. What a sweeping generalisation that infantilises women & reduces us to no more than our diagnoses.

I can guarantee that, when this story is picked up more widely tomorrow, there will be people who will defend the court’s decisions purely on the basis that the woman had mental health problems. Some – who see a diagnosis, who see risk, rather than a person – will see mental health as a trump card, a byword for dangerousness and unpredictability.

Does a bipolar diagnosis make a mother unfit? No, not in and of itself. No more than would a diagnosis of another relapsing and remitting condition like Crohn’s disease. Yes, the mother might relapse. Maybe relapse is not a possibility but a certainty, so the only question is when the next relapse will happen, not if it will.  That’s equally true of Crohn’s disease.

If a mother has a bipolar diagnosis, that’s an argument for supporting the family, not removing her children. Supporting the family is a far cheaper option than taking children into care of putting them up for adoption. Both are astronomically expensive options financially. If a mother has a bipolar diagnosis, that’s an argument for supporting the family, not removing the children. That’s the humane and compassionate response.

Let’s hope this case receives such an outcry that women with a bipolar disorder will be viewed more realistically. Not infantilised.

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[15th April 2014] The final chapter for mother and child; and the Guardian

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Related web links:

The following topics are covered:

• Statements from the parties involved – including court judgments (including the judges’ reasons), Essex County Council, the mother’s solicitor & MP, and the hospital where she was treated
  
• Other court cases related to pregnancies
• Mainstream media coverage
• Commentary and blogs – Birthrights charity, British Association of Social Workers, blogging barristers & others
• Other relevant material – Eg research, perinatal mental health, Court of Protection, twitter conversations

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Statements from the parties involved:

• Mr Justice Mostyn, Court of Protection – August 2012 caesarean judgment – Includes  (a) preface by judge (b) judgment (c) transcript of hearing and (d) copy of the Order made – Court of Protection, Mr Justice Mostyn, Re AA (Thursday 23rd August)
• His Honour Judge Newton, Chelmsford County Court – February 2013 child placement judgment – The judge’s reasons for why baby (P) should not be returned to her mother –  (A) – His Honour Judge Newton in the matter of  Re: P (a child) – Chelmsford County Court judgment (February 2013)
• Essex County Council – Essex County Council responds to interest in story headlined “Essex removes baby from mother” – Key dates, context and statement (Monday 2nd December)
• Brendan Flemming, solicitor – Statement of the mother’s UK solicitor on his website – Brendan Fleming, solicitor, was “unable to discuss the facts, evidence or information in this case” and had “a duty to ensure information relating to ongoing proceedings remains confidential. As such, we are unable to offer any comments or information relating to this case.” (Monday 2nd December)
• North Essex Partnership NHS Foundation Trust– Statement on Caesarean Case (the hospital where the mother was treated) (Wednesday 4th December)
• John Hemming MP – Various statements on Hemming’s blog
• Mr Justice Charles, High Court – Reporting restrictions link (prohibiting the identification of the child or her carers) (Wednesday 4th December) Here’s the reporting restrictions order (version 2 – version 1 named the child) & here’s the judgment transcript (erronerously dated 2012)

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Other court cases relating to pregnancies:

Case 1 (1998): Forced caesarean was unlawful, despite High Court judge’s ruling

• Summary: Court-ordered caesareans in the UK – Sheila Kitzinger’s Letter from Europe in Birth – Issues in Perinatal Care (September 1998, Vol. 25.30) –
• Full court judgment: Louize Collins, Pathfinder Mental Health Services NHS Trust & St Georges Healthcare NHS Trust ex part “S”

Case 2 (May 2013): Court upheld autonomy of woman with bipolar diagnosis who had changed her mind and wanted abortion

• Full court judgment:Re SB (a patient; capacity to consent to termination)
• Mental capacity, mental illness and pregnancy – Miss B and the “bipolar abortion” case (May 2013) – My commentary <== This post includes links to other commentary and coverage

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Mainstream media coverage:

Saturday 30th November:

• ‘Operate on this mother so that we can take her baby’ – “A mother was given a caesarean section while unconscious – then social services put her baby into care” – Telegraph newspaper, by Christopher Booker – the original story
• Woman has child taken from her womb by social services – “Essex social services have obtained a court order against a woman that allowed her to be forcibly sedated and for her child to be taken from her womb by caesarean section” – Telegraph newspaper, by Colin Freeman – follow up a few  hours later

Criticism of Christopher Booker:

Christopher Booker is the journalist who wrote the original Telegraph piece.

• Must journalists attend court hearings to report accurately? “I posted last week on a judgment given by His Honour Judge Bellamy in a family court case involving a mother’s abuse of her baby The judge took the unusual step of criticising media reporting of the case. He said the Telegraph’s Christopher Booker’s reporting was “unbalanced, inaccurate and just plain wrong”.“ – UK Human Rights blog (May 2011)
• The superhuman cock-ups of Christopher Booker – “The journalist makes so many errors that you would be forgiven for thinking he did it deliberately to waste everyone’s time” – Guardian newspaper (October 2011)

Sunday 1st November

• ‘Am I crazy to want a baby when I’m schizophrenic?’ After a decade-long struggle, one woman tells of her fears as she contemplates starting a family. “Erica Camus, 33, has lived with paranoid schizophrenia for ten years.She manages her mental illness with daily medication and therapy.When she was first diagnosed she was convinced she was a fugitive. She is now pondering how her schizophrenia would affect a child” – Daily Mail newspaper
• Baby taken from mother by UK social services in ‘forced caesarean’ – RT.com (Russia Today)
• Council forces caesarean on mother – Sunday Times newspaper (£)
• Forced C-section was ‘the stuff of nightmares’ – “Social Services condemned for forcibly removing unborn child from woman” – Independent newspaper
• MP queries ‘forced’ caesarean section – “Child still in Essex social services’ care 15 months after Italian woman with mental health problems had baby removed” – Guardian newspaper
• Pregnant woman has unborn baby girl forcibly removed by caesarean after social workers obtain court order because she had suffered a mental breakdown – “Italian woman claims she was not warned she would be given a ceasarean. Essex council obtained order allowing them to sedate her against her will. The case has now escalated into an international legal row” – Daily Mail newspaper
• Social Services forcibly remove unborn child from woman by caesarean after she suffered mental health breakdown – Independent newspaper
• Woman’s Baby Taken From Womb By Court Order – “An MP is to raise the case of a woman whose baby was taken from her after she suffered a mental breakdown.” Sky News
• Woman’s baby taken from womb by social services – video – “A pregnant woman from Italy, in Britain on business was given a Caesarean section against her will, and had her baby removed by social services. The child is now in the process of being adopted.” – Channel 4 news, with Katie Razzall (twitter @katierazz)

Monday 2nd December

• British Social Services Sedate Woman, Take Child from Her Womb, Confiscate It Indefinitely – National Review (USA)
• Caesarean case mother denied chance to keep baby in hospital – “Doctors’ suggestion that baby forcibly removed from mother’s womb by court order should stay in hospital with her was rejected by court” – Telegraph newspaper
• Child taken from womb by social services: it’s not always wrong – “We must not get distracted by vilifying the Court of Protection when children’s rights are at stake. The system needs to be respected and supported, argues solicitor-advocate Sophie Khan” – Telegraph newspaper
• Council claims concern over risk to mother and child led to forced Caesarean – “Concerns about “risks to mother and child” led a health trust to apply for permission to deliver an unborn child by Caesarean section, a local authority said today.” – Independent Ireland
• ‘Forced caesarean’ mother ‘sends message of thanks’ – Video with MP John Hemming – ITV news
• ‘Forced’ caesarean case – Italian mother in talks with MP – “John Hemming says he hopes to raise matter in parliament, and has been in touch with Italian officials to see if they can help” – Guardian newspaper
• Judge intervenes in case of mentally-ill mother whose baby was delivered by caesarean section after court order – ITV news (2 min video)
• Judge intervenes over woman made to have caesarean – “Britain’s top family judge has taken over the case of an Italian mother whose baby was taken into care after an enforced Caesarean section.” – Times newspaper (£)
• Social workers ‘seize unborn baby from the WOMB’ after mother has panic attack – “Italian woman visiting UK on work training trip subject of bizarre legal action – it is claimed social services obtained High Court order for enforced birth by caesarean section” – Daily Mirror newspaper

Tuesday 3rd December:

• Caesarean and adoption mum’s treatment ‘brutal and invasive’ – “Stefano Oliva’s client was forced to undergo a Caesarean section and give her baby up for adoption because of fears for her mental health” – BBC news

• County council explains actions amid storm over caesarean section case – “The county council at the centre of the media storm after the baby of an Italian woman was delivered by enforced caesarean section has issued a statement explaining the background to its actions.” – Local Government Lawyermagazine
• Explain why you snatched baby girl at birth: Judge’s order to social workers behind forced caesarean – “Sir James Munby has demanded answers in extraordinary case. The child was taken from the 35-year-old Italian in forced caesarean. The case shines light on murky secrecy of Court of Protection” – Daily Mail newspaper
• Father of forced caesarean child is ‘over-stayer’ in Italy – ITV news
• Forced caesarean case: Italian woman ‘suffering like an animal’ – Guardian newspaper
• The forced Caesarean case proves that light must be shone on social services and the courts – Spectator magazine
• It’s not the caesarean but the adoption that is an act of violence – “The sedation of a bipolar woman for a caesarean is a medical issue. It’s what happened next to her baby that’s truly alarming” – Guardian newspaper, by Zoe Williams
• Italian woman who was given forced caesarean section: I want my baby back – Guardian newspaper
• Pregnancy and mental health & here – BBC Woman’s Hour, including an interview with Sarah (@HackneyBird)

Wednesday 4th December:

• Caesarean case mother ‘was six weeks off due date when baby was forcibly removed’ – “The lawyer of an Italian woman whose baby was removed by caesarean section and put up for adoption says the procedure was done weeks before she was due to give birth” – Telegraph newspaper
• Corrections and clarifications – Guardian newspaper correcting factual inaccuracies in earlier pieces
• Essex caesarean pregnancy ‘not full term’ – “Stefano Oliva’s client was forced to undergo a Caesarean section and give her baby up for adoption because of fears for her mental health” – BBC news
• Forced caesarean was ‘manifestly’ in Alessandra Pacchieri’s interest, says judge – “Papers from secretive Court how that a forced caesarean section on the Italian mother Alessandra Pacchieri was allowed because of fears for mother and baby” – Telegraph newspaper
• I could feel my baby kicking inside me. I was crying as I begged them not to cut me open: Mother whose baby was snatched from her womb by the State talks to the Mail – “Alessandra Pacchieri’s baby was taken into care from forced caesarean birth. Sinister decision was approved by shadowy Court of Protection. The distraught mother says her body was ‘invaded’ and her baby ‘stolen’.” – Daily Mail newspaper
  

Thursday 5th December:

• Court: forced C-section was medically justified – Las Vegas Sun
• Court judgment: Cesarean section forced on Italian woman in UK justified medically – Ottawa Citizen
• Caesarean case mother: Italian government to step into Alessandra Pacchieri adoption battle – “Italian government stepping into British legal battle over Alessandra Pacchieri and her baby delivered by forced caesarean” – Telegraph newspaper
• How the court ruled caesarean of Italian mother whose baby was snatched from the womb must be kept secret – “Girl was born to mother, who has bipolar disorder, by court-ordered caesarean 15 months ago. Her Italian mother, 35, says she has suffered ‘like an animal’ at having child she wants to raise taken away from her.” –Daily Mail newspaper
  
• The mother, the C-section baby and ‘secret British court’: the reality behind an ‘inhuman’ legal case is now emerging – Independent newspaper
• ‘Social workers stole my baby’: Forced caesarean mother tells of horrific ordeal – Independent newspaper
• ‘They have stolen my baby,’ insists Caesarean mother – Times newspaper (£)

Friday 6th December

• Court approved caesarean section for mentally ill woman because of two previous caesareans – BMJ (British Medical Journal (£)
• Court judgment: Cesarean section forced on Italian woman in UK justified medically – The Province (Canada)
• The inhumanity of a forced caesarean – “The Italian woman forced to have a c-section was effectively treated as a fetal container.” – By Barbara Hewson for Spiked
• I was tricked into having a caesarean – Essex Echo (twitter @essex_echo)
• The mother, the c-section baby and ‘secret British court’ a secrecy scandal – or the birth of a scare story? – Independent newspaper
• What about the mental effects on the mother of a forced caesarean? – “After a week of revelations about the Italian mother whose baby was snatched from the womb by social services, Beverley Turner speaks to a bipolar mother and a human rights lawyer about the broader ramifications.” – Telegraph newspaper

Saturday 7th December:

• Judge must unravel saga of baby snatched from womb – “In the shocking case of an Italian mother whose child was removed by caesarean, the head of Britain’s family courts will be looking closely at social workers’ actions.” – Telegraph newspaper, Christopher Booker. He’s back.
• Father of caesarean scandal woman: Why I DON’T believe she should keep the baby – “Alessandra Pacchieri’s baby was taken into care from forced caesarean birth. Controversial decision was approved by secretive Court of Protection. Father Marino has backed the court’s decision to put child up for adoption. Says daughter is a ‘threat’ to the baby because she suffers ‘manic delusions’.” – Daily Mail
  

Sunday 8th December:

• Father of woman forced to have caesarean backs British court’s decision – “The father of a woman forced to have a caesarean so her child could be put into care has backed the decision by British courts over fears of his daughter’s mental condition” – Telegraph newspaper

Saturday 14th December:

• I’m not scared by the forced caesarean row, I’m reassured… and I’m bipolar and pregnant, too – “Kerry Hudson suffers from a bipilar-type mental illness. She is pregnant and has come off medication for the duration. Kerry is reassured she has doctors to help her make decisions.” – Daily Mail newspaper
  

 

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Commentary & blogs:

Sunday 1st December:

• Pregnant woman has unborn baby girl forcibly removed by caesarean after social workers obtain court order because she had suffered a mental breakdown – A Conservative Edge blog (Philadelphia, USA)
• Hemming helps woman in forced Caesarean and adoption case – Liberal Democrat Voice website

Monday 2nd December:

• BASW hits out at social worker scapegoating in Essex caesarean row – BASW (British Association of Social Workers)
• Forced caesarean: a legal perspective – Birthrights (“Birthrights is the UK’s only organisation dedicated to improving women’s experience of pregnancy and childbirth by promoting respect for human rights”)
• Italian woman continues legal battle for return of her child after court-ordered caesarean birth – Marilyn Stowe blog
• Italian mother: Statement by John Hemmings – Statement by the MP in contact with the mother
• A mother was given a caesarean section while unconscious – Obiter J blog
• Media portrayals of social work  – By David Niven (twitter @davidniven)
• Never let the facts get in the way of a good story eh? – By Pink Tape blog (family law barrister Lucy Reed)
• Opinion: Child taken from womb by social services. Really? – Lib Dem Voice by Evan Harris (part of Hacked Off)
• Our response to media reporting on forced caesarean and continued separation of mother and child – “The forced caesarean and continued separation of mother and child is, we believe, unprecedented.” – Bipolar UK (national bipolar charity)
• Untimely ripped – Suesspicious Minds blog (an overview of the legal points) (twitter @suesspiciousminds)

Tuesday 3rd December:

• ‘Essex council should be commended for speaking out on the forced caesarean case’– “It’s time for councils to reconsider their position of not commenting on individual cases” – Community Care (twitter @communitycare)
• Forced caesarean case: Italian mum ‘suffering like an animal’ after baby taken by social services – “She was heavily pregnant when she fell ill at an airport, taken to a psychiatric hospital where her baby was delivered against her will” – Daily Mirror newspaper
• Forced caesarean: the mother’s story and the judge’s – Heresy Corner blog by Heresiarch (twitter @Heresy_Corner)
• Forcible caesarean section authorised for Italian national present temporarily in England – 39 Essex Street Chambers newsletter (barristers) (page 9)
• Lessons learned from the ‘Forced C-section’ case – UK Human Rights blog (by human rights barrister Adam Wagner)
• More questions than answers – on the ‘forced caesarean’ case – The Small Places blog by Lucy Series (twitter @thesmallplaces)
• A piece that is not about forced caesareans – Mental Health & Mental Capacity Blog – by Dr Nell Munro of Nottingham University Law School
• When we don’t know what we don’t know: the “forced C-section” case – “What concerns me about the reporting of this case is the lack of detail surrounding legal issues. Without detail speculation fills a narrative vacuum, resulting in some possibly unfounded conclusions – and frightening people, especially women with mental health issues, in the process.” By Charlotte Walker (twitter @bipolarblogger)
• Why The “Forced Caesarean” Story Was Wrong – “The case is complicated, unusual and tragic. But social services did not force a woman to have a caesarean so that they could take away her baby.” – Buzzfeed by @flashboy

Wednesday 4th December:

• Booker, Hemming and the ‘forced caesarean case: a masterclass in Flat Earth news – Head of Legal blog by Carl Gardner (barrister) (twitter @carlgardner)
• Caesarean sections, autonomy and consent – Practical Ethics, University of Oxford
• The judgment from court of protection in the caesarean section case – Suesspicious Minds blog – a quick overview of the legal points following the publication of the judgment – (twitter @suesspiciousminds)
• A post which is about caesarean without consent – Mental Health & Mental Capacity Blog – by Dr Nell Munro of Nottingham University Law School
• Update on the Essex c-section case – By Pink Tape blog (family law barrister Lucy Reed)

Thursday 5th December:

• The Court of Protection and the new Family Court: can publishing judgments prevent moral panics? – Cardiff Law School, by Julie Doughty and Lucy Series
• Comment: Forced C-sections and stolen babies – “The Alessandra Pacchieri case looks like the ‘stuff of nightmares’, but the problems it highlights are real.” By Jennie Bristow for BPAS (British Pregnancy Advisory Service)
• One flew over the Hemmings nest – Ministry of Truth blog (twitter @Unity_MoT)
• Views on the forced cesarean judgment – Birthrights (“Birthrights is the UK’s only organisation dedicated to improving women’s experience of pregnancy and childbirth by promoting respect for human rights”) by barrister Elizabeth Prochaska ‏(twitter @eprochaska) – “All in all, a depressing case for anyone concerned with modern maternity care and the rights of people with mental illness. The comment by Lucy Series on twitter best sums up my reaction: “If you were trying to convince somebody the Mental Capacity Act was progressive, empowering, person-centred, the caesarean judgment would not help you.””

Saturday 7th December:

• A forced Caesarean? Concerns still linger – Diary of a Political Hack blog by Martin Shapland ‏(twitter @MShapland)

Sunday 8th December:

• Caesarean Escalation, Judges on Human Rights and Happy Birthday – the Human Rights Roundup – UK Human Rights blog

Monday 9th December:

• Turning realisable rights into real rights – Mental Health & Mental Capacity Blog – by Dr Nell Munro of Nottingham University Law School

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Other relevant material:

The Court of Protection:

• Revealed: How UK justice is dispensed out of hours down the phone line – “The Court of Protection is facing fresh questions about transparency, as The Independent reveals that its judges are making life-or-death decisions over the phone, with incomplete evidence, in proceedings that are not always recorded.” – Independent newspaper (June 2013)

Perinatal mental health:

• All Babies Count: spotlight on perinatal mental health – NSPCC (June 2013)
• Guidance for commissioners on perinatal mental health – Royal College of Psychiatrists
• We are recruiting women for a study on pregnancy and medication – “Have you used psychotropic medication and had a child in the last three years? If so, we would like to speak to you” – McPin Foundation (27th November)

Research:

• McPin Foundation – Recruiting women participants for a study on pregnancy and anti-psychotic medication – “Have you used psychotropic medication and had a child in the last three years? If so, we would like to speak to you. When women with a severe mental illness want to start a family, or find that they are pregnant, they may have to make decisions about whether to keep using medication, change it or stop it altogether. This can be a difficult decision. We want to find out more about how women decide what they want to do and what could have helped them to make that decision.”

Twitter conversations:

• Bipolar disorder and pregnancy: unfit to be a mother (Saturday)
• Bipolar disorder and pregnancy: unfit to be a mother (Sunday)
• Starting a family when you have mental health problems (Sunday 1st December )
• Starting a family when you have a mental health problem (part 2) (Sunday 1st December)
• My tweets on the subject on Monday 2nd (with links)
• My tweets on Tuesday 3rd
• My tweets on Wednesday 4th
• My tweets on Thursday 5th
• My tweets on Friday 6th

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Can stigma be challenged by evoking stigmatising stereotypes? From the Maudsley to Bedlam

Earlier today, the South London and Maudsley NHS Foundation Trust (SLaM) announced the title of its new Channel 4 mental health series. Filmed over a year, the four-part observational documentary series would take what was billed as an “in-depth and unprecedented look” at “the reality of providing [and receiving] mental health services in the twenty first century”. We were promised “exclusive access” to patients and staff “covering aspects of mental illness you may never have seen before”.

So far, so enticing and, with the prestigious SLaM at the helm, we were sure to be in safe hands. And yet, what title had SLaM chosen for the series? Bedlam.

Yes, Bedlam. That institution dating from medieval times the mention of which evokes images of madmen, chaos and barbaric treatments: just put the word in a search engine and see what pops up. Images of naked people writhing on the floor in crowded rooms, watched over by ladies in crinolines holding handkerchiefs to their noses. Of unhappy people chained to walls – by the neck. Images that play to every negative stereotype – such as dangerousness and unpredictability – about mental ill health.

This post explores my conversation with SLaM over the course of the day, together with fascinating insights from the lovely twitter people on whether Bedlam was a suitable choice for the forthcoming documentary series. Ultimately, SLaM decided that they will publish a statement setting out in more detail the background to the filming as well as what they refer to as “the name issue”.  At present, I’m left with a number of important unanswered questions. Read on to find out more.

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[Update: On Thursday 3rd, SLaM issued a statement – linked below – clarifying their choice of name.]

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My reaction on seeing the title of the new documentary series was: this title has been chosen purely to grab attention, sacrificing stigma-busting on the altar of viewer numbers. So I tweeted to SLaM:

“Curious to know why a documentary series about today’s mental health services has been given a name from the Medieval age. Can we expect footage of today’s treatments to be interspersed with dramatic reconstructions and references to Medieval ones? If so, can we see actors writhing in straitjackets or chained up in baths. Would make for entertaining TV!”

Hey, why not go the whole hog and call it Straitjacket, Chemical Cosh or even Naked Lunatics? SLaM replied, “It’s a reference to our heritage – we can trace our roots back to 1247. Our website can provide more info,” and linked back to the original press release. Indeed, I’d already read this in the press release:

“The title was decided upon both by SLaM and Channel 4. It’s based on the fact that SLaM can trace its roots back to 1247 when the Priory of St Mary of Bethlehem was established in the City of London. The priory, which became a refuge for the sick and infirm, was known as ‘Bedlam’ and was the earliest form of what is now Bethlem Royal Hospital.”

Yes, but … this is a series about modern mental healthcare, not the history of treating mental illness. This was a series which SLaM said they hoped would:

“… help challenge the stigma and discrimination that still exists today and to promote better awareness and understanding of mental health issues.”

Which brings me to the premise of this blog post, namely:

Is it possible to challenge stigma by evoking stigmatising stereotypes? Is it possible to promote better awareness and understanding of mental health issues by conjuring images of medieval madhouses and Victorian lunatic asylums?

SLaM’s view is, it seems, yes. But what did others think? Here are some of the responses I received when I asked the lovely twitter people. They are well worth reading, as they contain some of what Eric Pickles would call “frank advice” as well as hilarious suggestions.

Following feedback from myself and others, SLaM will be publishing additional information about the series and the choice of name. I look forward to reading it because, at present, I have several unanswered questions, based on my personal experience of working with the media. My queries are:

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Queries relating to SLaM:

• Knowledge and consent: Did participants agree to the series being named after a notorious lunatic asylum? When patients and staff signed consent forms to be filmed for a documentary series on modern mental healthcare, were they asked if they agreed to be linked with most notorious lunatic asylum? Were they asked about the name change from modern-day The Maudsley to medieval Bedlam?

• Name choice: How was the series name chosen and by whom? Who – Channel 4 or SLaM – suggested Bedlam as the series name? Who at SlaM had the final say on name choice and – given SLaM said to me that it was decided “after much debate” – how were participants (staff and especially patients) involved in the debate and the decision?

• Name choice: What other options were considered and why were they rejected? Why was the documentary – whose working title was “The Maudsley” – renamed “Bedlam? The team behind the series has produced other fly-on-the-wall documentaries with enticing but non-stigmatising titles such as 24 Hours in A&E, The Audience, Inside Claridges and The Year the Town Hall Shrank. Why is it only their series on mental health problems that gets a salacious title?

• Timing: When did SLaM know that Bedlam was Channel 4’s preferred choice? SLaM said to me that, “It [the choice of name] was decided quite late in the day after much debate.” But was it really the unspoken agreement from the outset that Bedlam would be the series name of choice? Did SLaM know this when the August press release went out? Did they know earlier but not let on because the controversial name might have put off staff and patients from participating?

• What will the impact be on SLaM’s reputation? Will trust in SLaM be damaged or enhanced by this collaboration with Channel 4? Will patients and staff feel stigmatised – or honoured by the association?

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Broader queries arising from the debate:

• Is all publicity good publicity? There is no doubt that Bedlam has stigmatising connotations for people experiencing mental distress, their families and mental health staff; but is this a price worth paying for getting the subject a TV audience? Do the ends justify the means?

• What lessons can be learned about engaging positively with the media? Are NHS trusts savvy enough to get what they want from TV companies in deals like this or do they get manipulated and suckered into doing more than is wise? Is working with TV always going to be a pact with the devil and about getting what little gains you can? When you lay down with dogs, will you always get up with fleas?

• What is the best way to exploit valuable brands like “Bedlam” and “Broadmoor” for maximum positive impact? On Channel 5 at present is a two-part documentary series, Inside Broadmoor, which has been criticised as using every mental illness stereotype in the book. But would a psychiatric hospital get airtime without the hook of a brand name like Bedlam or Broadmoor? And if, using them as a hook risk plays into the zombie apocalypse/dangerous and unpredictable narrative that exists around mental illness, can they be used productively at all?

• Is mental ill health too boring for TV unless it’s presented in a dramatic way? Is the only way to mental health problems portrayed on TV to provide a hook – like thirteenth century madness and torture? Do TV production companies consider audiences capable of only being interested in a topic if there is jeopardy, conflict or a journey; and, if so, how can that reality be made to work for the mental health lobby?

• Can a good programme get its message across despite a bad title? National anti-stigma campaign Time to Change says a good story can be weakened by poor image choice; it therefore follows that a good TV series can be weakened by poor title choice. Is it really possible to challenge stigma by evoking stigmatising stereotypes?

• What does the future hold for mental health documentaries? Will patients and staff in future be happy to participate in such programmes, knowing a stigma dump-and-run could take place?

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These are questions I am pondering and perhaps SLaM’s promised update on their new documentary series will answer some of them. I hope so.

My reservations about the series first arose when I saw the initial press release back in August. I assumed – because of the use of stigmatising language – that it was written by someone in the public relations team who was away the day the mental health awareness training was given. But, even so, someone approved it for publication. For instance, the initial press release makes these gaffs:

• References to “the mentally ill” and “those who suffer with mental illness”, both of which are advised against in the Time to Change guidance on use of language around mental health issues.
• Presenting a false dichotomy of what it’s like to manage a mental health condition: “Many people manage their illness with medication; others walk a daily tightrope with the possibility of relapsing at any time.”
• Referring to “manic depression”, a diagnostic category which was superseded decades ago.
• Describing Lambeth Hospital’s accident and emergency department in lurid terms: “In a postcode with the highest rates of psychosis in Europe, this is the Accident and Emergency of mental health … For our staff it’s all about risk management … Getting it wrong could have tragic consequences.” This is the zombie apocalypse narrative of mental illness.

Was the person who signed off this press release involved in the decision to call a documentary series on modern mental healthcare Bedlam? I don’t know. But it will be interesting to see what the documentary looks when it’s broadcast at the end of the month. Especially since the production company behind it also brought us a documentary from another residential setting with a long history … namely Claridges.

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See below for further related links.

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• My Storify stories of tweets and other links

  • From “The Maudsley” to “Bedlam”: the evolution of a programme name – including the discussion with SLaM that led to them deciding to issue a statement explaining the background process and decision on what they refer to as “the name issue”
  • Bedlam – discussions on the TV programme name – After I posted my initial Storify, I asked the lovely twitter people what they thought of the name “Bedlam”. In this Storify story is the long version of the discussions that ensured.
  • What do the lovely twitter people think about Bedlam as a name for a programme on modern mental healthcare? – Don’t take my word for it – what do the lovely twitter people think? This Storify story shows just the comments people made in response to this query – some hilarious!
  • What does mental illness look like? The head clutcher – on the harm done by the use of stereotyped portrayals of mental health problems

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• South London & Maudsley NHS Foundation Trust

  • Bedlam – Our new Channel 4 series – this afternoon’s announcement about the title name (2nd October)
  • SLaM and Channel 4 make groundbreaking documentary series on mental health – More information about the documentary series is contained in this initial announcement (22nd August)
  • On twitter: @MaudsleyNHS
  • Website: SLaM
  • Update: Bedlam – Why did we choose this name for our Channel 4 series – Statement from SLaM on Thursday 3rd October clarifying the reasons for the name choice
  • Update: Bedlam, our new Channel 4 series – SLaM e-news edition dated 14th October (which includes a link to this blog)

 

• Time to Change

  • Guidance on image choice in stories with a mental health element, from the national anti-stigma campaign in – “Some really strong stories that may include great content and have educational value can be weakened by the use of an innappropriate image.” Why shouldn’t the same be true of TV? In other words, a really strong documentary that may include great content and have educational value can be weakened by use of an an inappropriate title.
  • Guidance on language use around mental health issues (which advises against using such phrases as “the mentally ill” and people “suffering with” mental illness, as used in the August SLaM press release)

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• Mental health on TV – some portrayals this year:

  • Inside Broadmoor – Channel 5‘s current 2-part documentary – “This remarkable two-part documentary special marks the 150th anniversary of Broadmoor, home to Britain’s most notorious killers. With exclusive and unprecedented access to Broadmoor’s archives, this film unfolds the extraordinary history of the world’s most famous and feared hospital. Why was it originally created, and what has it become?”
  • My Mad Fat Diary –“Set in the mid-90s at the height of Cool Britannia, this six-part drama is based on Rae Earl’s real-life diaries. It takes a hilarious and honest look at teenage life through the eyes of Rae, a funny, music-mad 16 year old who, despite an eccentric mother, body image and mental health” – Channel 4‘s drama series which opens with Rae being discharged from psychiatric hospital after months of treatment. Covers self-harm.
  • It’s a Mad World – A season of BBC Three films looking at a range of mental health issues affecting young people in Britain today, including:
    • Don’t Call Me Crazy – 3-part series filmed over a year at a teenage inpatient psychiatric unit
    • Football’s Suicide Secret – “Clarke Carlisle investigates the dark side of professional sport: depression, addiction and suicide.”
    • Diaries of a Broken Mind – “Using handheld cameras, 20 extraordinary young people with a range of health disorders from OCD to schizophrenia show us what life is really like as they navigate the rocky road into adulthood.”
    • Rachel Bruno: My Dad and Me – “26-year-old Rachel is the daughter of Frank Bruno, the ex-heavyweight boxing champion who is one of Britain’s most famous sufferers of bipolar affective disorder.”
    • Failed by the NHS – “26-year-old Jonny Benjamin, who has schizophrenia and depression, investigates why many young people with mental illness are failing to get the right treatment from the NHS.”
    • Extreme OCD Camp – 2-part documentary – “6 British teenagers and young adults living with OCD embark on a unique, life changing week-long treatment course in the US, where course leaders use exposure therapy to enable their participants to confront their fears.”
    • Inside My Mind – The science behind mental health problems
    • Free Speech – Young people debate whether modern life is driving us mad

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• Additional links:

  • Image search for “Bedlam” – the results of this search are not how I perceive modern inpatient mental healthcare (and I’ve been on the receiving end of some of the worst of it)

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Let’s talk about poo! It’s tweet chat time …

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Here’s the transcript & fab wordcloud from the tweet chat on 1st August – patients & nurses all talking about poo!

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This Thursday 1st August at 8pm, We Nurses will be hosting a tweet chat about constipation problems, at my suggestion. Here’s my earlier blog on constipation induced by psychiatric medication, including 25 tips you can try for yourself. It is my most read blog piece ever. I guess that makes me some sort of Poo Queen. Hmm …

However, if it gets people talking about an important but often overlooked or covered up topic, that’s all to the good. Let’s break the taboo about poo and make a date in our diaries for this Thursday’s poo chat!

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Background reading:

• My blog on the topic:  Constipation: embarrassment, discomfort … and Poo Pride!
• From We Nurses:
  • link to the guide on the upcoming tweet chat: Talking about poo
  • Tweet chats made simple – handy guide to tweet chats if you’re a newbie
• NHS Choices: Constipation
• What is the Bristol stool form scale anyway …? A brief overview

The Bristol stool tart cake!

 

Additional information on constipation:

• BUPA: Constipation
• Cancer Research UK:
  • Symptoms of constipation
  • Causes of constipation
  • Assessing your constipation
• Patient UK:
  • Constipation in adults
  • Constipation in children
• Royal College of Nursing: Management of lower bowel dysfunction

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Some meandering thoughts on scientific studies

Elizabeth Garrett Anderson, Britain’s first female doctor, by John Singer Sargent

Some thoughts on the nature of scientific studies – what gets studied, how studies are designed, how interventions are implemented – in response to the  publication of a blog looking at a study that showed Joint Crisis Plans were ineffective.

(I’ll work the twitter conversation up into a proper blog post when I have time, and then publicise it. In the meantime, it’s here as a repository for some thoughts of mine and thought-provoking responses of others.)

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• My tweets & those of others bringing their perspectives, including researchers in the field. – Scientific studies
• Mental Elf blog – Joint Crisis Plans to prevent compulsory admissions: a good idea stymied by poor execution? (3rd June) (contains links to the 2013 study as well as its predecessors in 1999 and 2004)
• Dr Sarah Knowles‘ post (prompted by a twitter conversation on this topic – see the Storify story above) – What does ‘implementation’ mean in research? Or, finding out why good ideas can be badly executed. (5th June)

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Constipation: embarrassment, discomfort … and Poo Pride!

Alternative Bristol stool form chart from rewarm.co.uk

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On Thursday 1st August at 8pm, the #PooPride tweet chat with We Nurses took place – woo hoo!

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Having been on twitter for a little over a year, I’ve seen lots of topics discussed. Bowel problems aren’t one of them. Which is odd, given the effect many psychiatric medications have on your digestive system. My hints on twitter about my debilitating bowel problems seemed to go unnoticed. However, since there are a lot of people taking psychiatric medications, and for long periods, there must be a lot of people out there with constipation and other bowel problems who are suffering in silence.

At Easter, Charlotte Walker (@BipolarBlogger) blogged about a weekend away and how medication and bowel problems had affected her. I recognised the juggling act and stress of taking medications and planning toilet breaks. Then, yesterday evening, I spotted a tweet by Charlotte about constipation, to which I responded. When Charlotte asked me if I had any recommendations, it turned out that, after years of managing my own bowel problems, I could come up with 20 off the top of my head! (See below.)

That started up a spontaneous tweet chat. (All the tweets are linked below.) Then, because the issue is much wider than our personal experiences, because people were suggesting medications and treatments to try, and because constipation can cause serious complications, I decided to see if we could have an organised tweet chat involving medical professionals too. Watch this space!

Here’s the tweet of Charlotte’s that caught my eye:

“Dear antipsychotics, love what you’re doing on the bipolar, great stuff. Just concerned my bowel may RUPTURE, ease off a bit there, maybe?”

Charlotte explained that she was experiencing antipsychotic-induced chronic constipation which had flared up into faecal impaction. Not fun. Not fun at all.

Problems with your digestive system – whether it’s too much movement, or too little, or both; whether it’s frequency, consistency or volume; or colour, smell, blood or mucus; or some other charming symptom – can be a blush-making topic. I know, because I’ve blushed those blushes.

The first time I plucked up courage to mention to a medical professional the bowel problems I was experiencing, I received a reaction I hadn’t anticipated: laughter. As a result, I didn’t raise the issue again till an Atos medical. Through bodily sobs and streaming tears caused by shame, I forced myself to describe my symptoms. This time, the reaction was disbelief: zero points. Laughter; then disbelief. After that, through trial and error, a keen  memory for toilet locations and a well-stocked handbag, I gradually found ways to manage my bowel problems myself.

That was no longer possible, however, when I was detained in hospital. The combination of enforced inactivity, a diet devoid of fibre and the side effects of psychiatric medications meant my bowels came to a halt. There was one fortnight when I passed just one motion. Thank goodness for stretchy trousers that could accommodate my massive and growing belly, taut as a drum, as I waddled round the ward in pain, unheeded and untreated except for senna.

Since then, through my own efforts and working with my GP and the specialists she’s referred me to, I’ve found a way to manage the problems. And I can talk to pretty much any health professionals without embarrassment now so I know that, if problems come up in future, I’ll be able to talk about them and, hopefully, get the help I need.

You know you’ve got constipation when your digestive system has slowed down so you pass motions less often than you want to or when your stools are hard and difficult to pass. You may also have indigestion. It’s uncomfortable. It’s embarrassing. It’s even potentially dangerous. It’s an important topic.

Normally, constipation is a short-term problem which responds well to lifestyle changes and, if necessary, treatment. However, if constipation is drug-induced and there isn’t an alternative, you may be looking at a multi-pronged approach in order to successfully keep on top of constipation. So, for those of us taking medication, it’s a topic of even more importance.

Below, as a starting point for discussion, as food for thought, are the twenty tips I came up with off the top of my head for Charlotte to try out, plus a few more I thought of later. They are things that have helped me personally (or people I know) to manage the impact of drug-induced constipation. They’re aimed at someone who’s otherwise physically healthy. They’re tips you could use as a springboard for discussion. They’re common sense, not rocket science. They’re not comprehensive. For medical advice, take a look at the NHS website or ask your medical practitioner. Maybe they’re worth a try. We’re all different, after all.

As Charlotte tweeted later that evening:

 “Goodness! What a lot of people have followed me since @Sectioned_ and I started talking about constipation! #goodtoshare”

And, as Phil Dore (@thus_spake_z) tweeted:

“Poo Pride! :D”

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My personal tips on dealing with drug-induced constipation:

1. Keep a poo diary

If you keep a record of the motions you pass, you may start to see a (monthly or other) pattern. Women in particular can find their bowel movements are affected by their monthly cycle. Maybe it’s not a relapse or a remission; it’s just your monthly cycle. If you get to know the effect (if any) that your monthly cycle has on your bowels, you’ll be better able to distinguish what works and what doesn’t for your constipation. And improving constipation involves trial and error.

What to include in the poo diary? Time of day you pass (each) motion, what you were doing at the time (eg had you just smoked a cigarette). You’ll need to keep a record of what you eat and and your fluid intake, to see what effect that has too.

Also, include your Bristol stool scale number. It classifies stools into 7 different types. The ideal is around around a 3 or 4. The official Bristol stool form chart is above.

Bear in mind when looking at the chart above that your poo may not be the same as the colour shown: stools vary in colour depending on what you’ve eaten. I’ve pooed red after beetroot juice and green after spinach. Taking an iron supplement can (I’m told) blacken stools (and harden them). If there’s blood or mucus in your poo though, that’s not a good sign. Mention it to your medical practitioner.

Such a detailed diary won’t be necessary forever, but it’s a useful tool to see where you are now, and to identify any patterns emerging. Try to keep one for at least 2 weeks (men) or two cycles (women).

2.Eat or drink something

Stimulating one end of the alimentary canal (the long tube that runs from your mouth to your bum) can stimulate the other. Therefore, when you want to poop, first eat or drink something. I find that, if it’s going to work, it does so within around half an hour. So if I need to leave the house by 10am, I’ll eat drink or something (however light) at 9am to give it a chance to work its magic.

3. Try a stool softener

An effect of some psychiatric medications is to reduce the fluid content of foods. A stool softener (or osmotic laxative) is a medication that draws water into the stools, making them softer and therefore easier to pass. Lactulose is the stool softener I’ve tried and it’s worked for me. Brilliantly. Movicol is another one, though I haven’t tried that.

A downside is its taste: exceptionally sweet. But hey, just clean your teeth afterwards. Especially as another side effect of some psychiatric medications is dry mouth, or rather reduced saliva – and hence reduced protection for the teeth.

4. Use a jug

If your problem is hard stools, it’s water that will soften them; so you’ll need to take in sufficient fluids during the day. To ensure I push through enough fluids, I fill a jug with water on rising and fill my glass from it throughout the day. That gives me a goal to work through during the day.

Don’t drown yourself in fluids late in the day and end up wetting the bed. And yes, I have done this too: the meds I take knock me out so I sleep like the dead and wake up in a puddle. The way round that is to spread my fluid intake throughout the day so it’s not gulped down in a rush towards bedtime.

5. Prunes

Fluids rock. As do prunes. Drinking prune juice helps me too. And it’s super yummy. As are prunes with custard. I’ll take any excuse to eat prunes.

Beware though: don’t take too many. Once, before I knew the laxative effect of prune juice, I drank a whole litre in one go. That’s how I know it works. Now, I just drink a glass.

6. “Doing a Paula”

If you’re just not going, your bowels may be sluggish. Your digestive transit time (the time it takes from something going in your mouth to it coming out the other end) may have been slowed – whether caused by medications, or enforced inactivity if on ward, or lack of motivation to get active (a side effect of some drugs). If you want to know your transit time, you can do the sweetcorn test (eat some sweetcorn and see how long it takes to spot it in your stool – transit time should be around 24 hours).

One way to get the bowels moving is high impact exercise, which can stimulate the bowel to open. If I’m indoors, I’ll fire up my trampet and bounce along for a song. Jogging works too. Just be sure you know those toilet locations or have a handy pack of tissues in your bum bag.

Incidentally, if you normally have healthy bowels but find yourself almost or actually involuntarily evacuating your bowels during a run (pooing yourself), that may not necessarily mean you have a bowel problem. It can happen to normal, healthy runners the world over. It’s an occasional downside of the pastime. After all, the phrase “Doing a Paula” derives from the reason Olympic athlete Paula Radcliffe had to retire from the Athens marathon. Don’t panic. Just plan ahead. And learn the technique that enables you to delay passing a motion.

7. Vitamin C

Heard of the vitamin C “bowel tolerance dose”? Taking over 1g vit C gives me the trots. Everyone’s dose is different. I know the trots aren’t ideal, but sometimes you just need to pass a motion.

Incidentally, if you’ve recently changed your diet to include a high dose vitamin C supplement and find your stools are loose, the vitamin C could be the problem. Don’t automatically assume you’ve caught a bug or got IBS (irritable bowel syndrome). Experiment with the dose till you find the one that works for you.

8. A bathroom step

Essential bathroom kit is a little step (about 8” high), so that, when you sit to poo, your knees are a little above your bum. Sitting in this position relaxes your lower body and places your bowel in the correct position to pass a motion easily. It reduces the need to strain (which risks causing haemorrhoids/piles). And, bonus, it also means you can rest your reading material on a flat surface!

They’re cheap as chips (mine cost £2). Once you’ve used one of these, you’ll never want to poop any other way. If you’re visiting, you can usually find something to stick  under your feet – eg a couple of thick books, a pack of loo rolls – so your knees are at the right height. Simples.

9. Try training/routine

This is a controversial point because some bowel specialists I’ve seen say it’s impossible to train the bowel and others say the opposite.

The idea is that, at the same time each day – eg half an hour after breakfast (when you’ve stimulated the bowel by drinking or eating something) – you go into the bathroom whether or not you want to pass a motion. A sort of potty training for adults. You sit on the toilet, hang out there for 5 minutes, then leave. If you pass a motion good; if not, no problem. Maybe next time.

10. Latex gloves

This comes from a little trick I recall my mother showed me as a child. To get newborn kittens to poop for the first few weeks, rub their little bottoms. It worked. Why wouldn’t it work for humans too?

The idea is to very gently circle the anus with a gloved finger to relax it and, hopefully, give it that little extra  nudge it needs to stimulate the passing of a motion. Use lubrication of some sort (eg vaseline).

11. Smoking

Seriously. There’s a reason people smoke after a meal! I nearly took it up  in hospital again because I was so blocked. (Also because only the smokers were allowed into the garden.) Before I became a non-smoker, smoking a cigarette was a guaranteed way to bring on what I believe the Girl Guides call the “daily clear out” (though I suspect they don’t get the little girls to smoke).

12. Coffee

Again, there’s a reason people drink coffee after a meal. If you don’t like the taste, think of it as medicine: it may not taste good but, if it does the job, that’s what matters.

13. Stimulant laxatives

Senna is a laxative that works by stimulating the muscles of the gut to push your poo towards the anus (a stimulant laxative). Maybe this is just what you need. Bear in mind though that that senna is aimed at relatively short term use because it can, over time, make your bowels lazy.

Personally, senna was not good for me. When the nurses offered me various medications on ward, I made the mistake of thinking that, because it is a natural product, it would be the best choice. Wrong.

In fact it’s what caused me to blow up like one of the sheep in Far From the Madding Crowd: I wanted someone to spike me in the guts to relieve me of the terrible pain. I felt like I was going to die. In one fortnight, I only passed one motion.  I didn’t know what was causing the problem. I thought I’d be even worse without the senna. Luckily I was able to speak to a hospital pharmacist for an hour, and he helped me to work out what the problem was and what would help. If in doubt, seek medical advice.

Bulk-forming laxatives such as Fybogel are a third type, which help stools retain fluids.

14. Fibre

It’s a key recommendation for the prevention and management of constipation to have sufficient dietary fibre. Most adults don’t eat enough, and constipation is your clue that that means you.  You can increase your fibre intake by eating more fruit, vegetables, wholegrain rice, wholewheat pasta, wholemeal bread, seeds, nuts and oats. Eating more fibre helps keep bowel movements regular by helping food pass through your digestive tract more easily. High fibre foods can also make you feel fuller for longer, in case you’re struggling with cravings (another side effect of psychiatric drugs which contributes towards weight gain).

If you decide to increase your fibre intake, however, do so gradually: a sudden increase may make you feel bloated, produce more flatulance and give you stomach cramps. Eek!

15. There may be no magic bullet

Bear in mind that, though the hard stools and slow transit may be caused by psychiatric drugs, they may not be fixed just with drugs. It may take a package of measures to bring constipation under control. But finding the right drug/combination can surely go a long way to helping.

And be prepared for the fact that you may end up taking more drugs to deal with side effects (like constipation) than the number of drugs you take for your primary psychiatric symptoms. That’s just the way it is. Just as every surgery causes scars, so every drug has side effects. It’s just a question of finding the side effects profile you’re prepared to live with.

16.Experiment

You could try each of these suggestions to see which ones work for you. Perhaps put them together into a morning routine, tweaking as you go to work out the right combination for you: we’re all different.  However, it’s hard to tell what’s working when you’re doing lots of different things at the same time. You could consider doing them all at the same time and then gradually cutting each one out, one by one, to see what works; or stopping everything then adding them back in one by one.

17.Input and output

Reducing food intake (a little) can help. I wouldn’t have got quite so bunged up if I hadn’t eaten quite so much! Obviously we all vary and some people are under-weight or need to follow a special diet. On the whole, however, many of us would benefit from cutting down a little on what we eat. And, the less you put in, the less there is to get stuck inside!

18.Wet food

If the problem is constipation & hard stools, eating “wetter food” (eg soups, stews, curries) can also help a little. If you live on crisps, you’re asking for trouble.

19.We can all learn

Even clued up healthy eaters who think they know a lot about diet and lifestyle may benefit from a food diary & having their diet tweaked by a dietician. I’ve learned new stuff from the professionals I’ve seen. Even if we’re doing everything we know 100% spot on, science might have moved on since then. There are lots of fad diets and food myths we might have fallen prone to without noticing, so reviewing a food diary or having a professional do so can lead to improvements – even small tweaks – being found. And, with constipation, it’s these little things that add up.

We might even learn that things we thought were healthy options were actually contributing to bowel problems. For instance, taking supplements is always good, right? Wrong. For instance, taking too much vitamin C can cause loose stools, whilst taking iron tablets can harden stools. Fibre is always a good thing, right? Wrong. For some, a high fibre diet can irritate the bowel and lead to bloating and frequent loose stools. What you may think is IBS may resolve entirely on a lower fibre diet. Exercise is always good for you, right? Wrong. For some, high impact exercise can lead to involuntary bowel evacuations (“Doing a Paula”). If so, stick to gentler exercise. Or practice bowel control techniques.

20.Try it

Even if you’ve tried something before, it may be worthwhile trying it again. Bowels can be contrary beasties. “I’ve tried everything already” may mean you miss out on doing something that now works.

21. Tummy massage

Another way to stimulate the bowels to start moving is with tummy massage. Use the heel of your hand to make a big circle in a clockwise direction (the direction the bowels go in). Alternatively, lie on a hard surface face down and roll around. Or lie on your back with your legs in the air and cycle, to get the tummy muscles moving. All very elegant!

22. A hot bath

As Sylvia Plath wrote in her novel The Bell Jar, “There must be quite a few things a hot bath won’t cure, but I don’t know many of them.” A hot bath is another great way to get the bowels moving.

23.Specialist help

Ask your GP for a referral to a specialist clinic. If at first they say there isn’t one (my otherwise excellent GP did), do your research so you know the right terminology to use when asking for the service. For instance, I’ve had referals to a community dietician; a colposcopy clinic; a continence clinic; a bowel education group; a colonoscopy consultant; and a hospital consultant for anatomical investigations.

24. A tricky balance

Once you start taking steps to actively treat constipation, you might push your bowels the other way. Oh joy! Your bowels become as unpredictable as climate change. You might swing back and forth between the two before getting it right. Ho hum. You’ll get there. And in the meantime, be prepared.

25. The pitfalls of syndromes

If, along your constipation journey, someone mentions IBS, be careful how you use the diagnosis. With family and friends it may provide a label that helpfully enables you to side-step that awkward conversation about symptoms. However, if you’re going for medical treatment and you mention IBS, you’ll most likely see the doctor’s eyes glaze over. In essence, a syndrome is the medical profession’s way of saying they don’t know what’s wrong with you. It’s saying you’ve got a collection of symptoms they don’t know how to treat. It is a label that says to a medical professional, “Nothing you do will make the patient better. Next!” Use with care.

If you have any tips for easing constipation that you’d like to share, please feel free to comment below. Happy pooing!

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• My Storify of tweets – Psychiatric medication and constipation
• My Storify of tweets – the original 20 tips to beat constipation
• My Storify of tweets – some thoughts on starting a tweet chat on constipation
• Charlotte Walker’s blog post – Five hundred miles: remission versus recovery
• NHS Choices – Constipation
• My blog – Hot baths and how I relax
• Resources page – Medication – including links to the Choice & Medication website (“Probably the world’s biggest, best & most comprehensive independent website for partients, carers & professionals about choice & mental health medication.”) and The eMC (“The electronic Medicines Compendium (eMC) contains up to date, easily accessible information about medicines licensed for use in the UK)
• The healthy eating website produced by United Biscuits, manufacturer of biscuits and snacks, including McVitie’s biscuits, Jaffa Cakes, Hula Hoops, McCoy’s, Skips and KP Nuts. Yup, they have a healthy eating website. I read it on the back of my crisp packet.

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Mental health nurse & patient tweet chat: what do newbies need to know?

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The tweet chat took place on Thursday 20th February 2014 with We Nurses – catch up with the discussion by taking a look at the full transcript!

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I’m planning my first one hour tweet chat in a couple of weeks (date to be announced). (Check out my quick guide to tweet chats for more on what they are – this and other helpful links are below). Here’s what I have in mind, for an inpatient mental health nursing tweet chat:

• Patients: Are you a patient who’s experienced inpatient mental health nursing? What would you like the newbies to know – the student nurses about to start a placement or the newly qualified mental health nurse. What things that nurses did – good or bad – made a difference to your experience on ward?
• Students: Are you about to qualify as a mental health nurse? Are you a student nurse about to start your mental health placement?  What is the balance between fear and excitement? What would you like to know? What practical concerns do you have? What do you want help with to make your first days on ward a success?
• Nurses: Are you a qualified mental health nurse? Are you a student nurse who has completed your mental health placement? What tips would you like to pass on to newbies about to qualify or about to undertake a placement? What are those little insider tips that really helped? What would you have liked to know when you were a newbie?

I’d like to be able to share some really useful tips to help new mental health nurses and nursing students make their best start on ward, because that benefits both staff and patients. Here are some example questions I’ve thought up that students might want to know the answer to:

“How can I prepare for my placement so I get the most from it?”

“How can I put the knowledge I’ve learned at university into practice on the ward?”

“How can I settle in as quickly as possible so I fit in with my nursing team and ward life?”

“How can I switch off after a shift?”

“What should I do if I see another nurse doing treating a patient unkindly?”

Here are some examples of useful tips to pass on:

“The Bic 4-colour pens are really useful for filling in your paperwork.”

“Remember to always respect the patient as an individual and see past the diagnosis.”

“Don’t make assumptions or have preconceived ideas based on what you’ve been told before. Remain open-minded and make your own judgments based on your own personal experiences.”

As I’m not a nurse and haven’t run a tweet chat before, I’ve invited @MHnursechat – associated with the awesome We Nurses website and tweet chats – to run a joint tweet chat with me. We’re going to be discussing how this will work and, hopefully, setting a date. Very exciting!

In preparation for the tweet chat, I’m asking you to please share your tips and questions. That will help set the agenda to be followed and the areas we’ll focus on in the tweet chat – so it covers the most burning questions and drills down to the most useful tips. It may be that there will be more than one tweet chat on this topic – perhaps one covering what nurses need to know in their first few days, and another for when they’ve been there a few weeks. We’ll see. A tweet chat needs to have enough of a focus to engage people without overwhelming them, but at the same time enough breadth so it doesn’t peter out prematurely! If there are other topics you think would be good for tweet chats then please let me know!

You can comment below or tweet me (please don’t try to pack more than one query or tip into each tweet ) @Sectioned_ (please remember the underscore). It’s helpful if you could say whether you’re offering your comment from your experience as a patient, nurse or student. Look forward to hearing from you!

Why a tweet chat? I’m often interested in discovering what other tweeps think about topics and then sharing those insights. So, quite a few times, I’ve tweeted questions then collated the responses into a Storify story which I’ve sometimes turned into a blog. (I was rather excited to learn that this is called “crowd sourcing” and “curating the chat”.) This time I thought I’d try making it a bit more organised & involve more people: I’m beginning to learn just how valuable Twitter is as a way to bring together groups of people to share views openly in a way they might not otherwise do. (I’m told this is called “disruption” – disrupting the natural order of things and mixing it up, like mental health peeps and staff learning together.) (Thanks to Victoria Betton for all the cool jargon!)

Why this topic? After all, I’m not a nurse. As a child, however, I remember being taken to one of the big long-stay psychiatric hospitals of the sort portrayed in the film One Flew Over the Cuckoo’s Nest. I remember the high ceilings, big windows and long corridors. Happily I wasn’t being booked in myself. I was visiting family friends who worked there as psychiatric nurses. Members of my family also worked on psychiatric wards and in nursing.  When I was sectioned a couple of years ago, my inpatient experience fell far short of the care I would hope all psychiatric nurses aim to deliver. You could say that everything that could go wrong did go wrong. But, as I’ve been around nurses my whole life, I know that the image and practice of mental health nursing has come a very long way since the fearsomely controlling figure portrayed by Nurse Ratched. For me, nurses are (or should be) an essential part of the team that helps get me well. So I’m all for sharing tips and best practice to help nurses be their best. I’m hoping this tweet chat will be one small way to do that.

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• Guide to tweet chats – all you need to know to join in your first tweet chat or get more from them
• Mental health jargon buster and acronym buster – please send yours in! We’ll try to avoid jargon during the tweet chat itself, but if the jargon’s in the jargon buster, I can just tweet a copy of that by way of explanation

For the nurses and student nurses amongst you, here’s some nurse-focussed content:

• We Nurses website
• Archive of We Nurses tweet chats
• We Nurses guide to tweet chat netiquette (etiquette for nurses using tweet chats)
• Transcript of the tweet chat with all the participants’ tweets collated – take a look at this fascinating and wide-ranging discussion with lots of different perspectives!

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Hot baths & how I relax

“There must be quite a few things a hot bath won’t cure, but I don’t know many of them.” So wrote poet Sylvia Plath in her novel The Bell Jar, whose central character has clinical depression. Hot baths are certainly a remedy I turn to when feeling out of sorts. There’s a reason my Twitter avatar is a bath filled with hot water.

Last weekend, I was with a group who took turns to share one thing they did to nurture themselves, as a pick-me-up, to relax. Naturally I  mentioned my favourite cure all, the hot bath. One woman, when asked what she did to nurture herself, burst into tears and said she never had any time for herself. Then she remembered she’d recently had her nails done, and her nails were indeed a glorious deep berry colour. And, as we went round the group, we all learned new ways we could try out to relax ourselves.

I was really inspired by some of the suggestions, so thought I’d share them with the lovely Twitter people and at the same time ask them for their tips. If you can’t think of some way to nurture yourself, or are looking for some inspiration from things that work for others, take a look at the suggestions below and in the linked Storify story of tweets where there are many more.

I’m pretty sure there’s something for everyone! And if you have a tip of your own to share, please feel free to comment below or tweet me to be added to the Storify story of tweets.

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Here are some things the women in the group said they did to relax, to nurture themselves, to care for themselves:

“I sit in a coffee shop & watch people.”

“On Sunday, when I go for my long run, I take off my watch, leave my phone behind & just go.”

“I read gossip magazines like Okay. It feels good to focus on something completely superficial.”

“I put on my snuggly dressing gown. Whatever I’m doing, it’s really comforting.”

“One Sunday a month, I turn everything electrical off for the whole day.”

“Walking in nature” & “Walking my dogs.”

“On summer afternoons, I lie on the trampoline in the garden in the sunshine. In winter, I watch TV series.”

“I go to a spa or get a pedicure” & “I paint my nails”.

“I try on clothes in expensive shops!”

“I sit on my prayer mat & imagine it’s a magic carpet transporting me somewhere calm.”

“I spray my favourite perfume in the air” & “I use aromatherapy oils”.

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Here are some suggestions from the lovely Twitter people when I asked the following:

What helps you to nurture yourself when you’re feeling out of sorts? What says “me time” to you? What do you to relax? What are your tips? #howIrelax

• I bake, put radio 4 on and create yummy food … lifts my spirits always (Fibrogirl @fibro_girl)
• I always watch police programmes – watch someone else get into trouble for a change! (Petrolhead999 @Petrolhead999)
• My garden, birdwatching, long hot bubble baths, my cats and music (I make ‘rescue’ cds/playlists) for when things are bleak (Liz (@redliz)
• Do something you enjoy: baking, reading, dancing, seeing friends/family, walking, running, painting. Put a hole in your stress bucket. (LYPFT Library @lypftlib)
• Hot bath,relaxing music, undersea nature documentary, drawing/painting/collage, writing poetry and masturbation (Michael Brown @brownie1983)
• Long hot bubble bath seconded. (Stroppy Ambo Woman @Stroppyambo)
• Watching my pets, baking, knitting, youtubing animals. (Just another one @priorynutter)
• With mental health specifically: just stopping & forgetting any responsibility I feel to “work through” the feelings of anxiety & depression. (Coffee Zombie @xcoffeezombiex)
• I play the keyboard. When low it brings me out of myself, when high it burns off rocket fuel safely (Polarbearcub @megandoodah)
• Knitting, as it helps to keep my mind and my body occupied. I also essential oils as smell is an easy distraction technique. (Bexatron @DuckBeaki)
• Bath, music, horlicks, clean sheets. oh, and crochet! (Ceri Jones @liberatedwomble)
• People watching is great. Listen to music. (ForeverMorrissey @Mozgirl71)
• I take a nice long hot bubble bath, light some incense and candles and play calming music (Sarah @sarahxXx1990)
• I tend to put headphones on to block out the world with music or a marathon of a favorite tv show. (Roiben @roiben)
• I’ve always been helped by music, both listening and playing, can relax, elate, or show you’re not on your own (Shaun Blezard @cluttermusic)
• I watch the sunrise, and sunset! (Rokayah415 @Rokayah415)
• Read novels, swim, workout at the gym, pat my cat, go shopping (not food), watch movies (Anna Butterfly @aButterfly123)
• As a nerd I play computer games to purge my mind of the insanity of my day. Nothing like wiping out Alien hordes to destress (Notjarvis @notjarvis)
• Has to be the relax cd by Paul McKenna for me with benzoin aromatherapy oil! (Michelle @oldtrouty)
• Favourite music, lush baths & clouds. Oh … and Twitter – for good virtual support from good people. (Kimbohud @Kimbohud)

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If you have any suggestions of your own, please comment below, or tweet me to be added to the Storify story (check it out – there are many more helpful suggestions here too).

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• Storify story “How I relax” of my tweets & those of others. (Last week I learned from Victoria Betton (@VictoriaBetton) that asking people to contribute in this way is called “crowd sourcing”!)
• Another good way (backed up by science) for reducing stress and anxiety is to look at images of nature & other cute stuff – so I also have a page of cute stuff that I update as I come across new material.
• Sylvia Plath’s novel The Bell Jar was in the news last week when a new 50th anniversary edition was issued with a controversial “chick lit” cover (pictured above) – eg “The Bell Jar’s new cover derided for branding Sylvia Plath novel as chick lit” (Guardian, 1st February 2013)

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What advice would you give someone recently discharged from psychiatric hospital?

What advice would you give to a patient who’s recently been discharged from psychiatric hospital? What would you have wanted to know when you first came out? I was asked these questions yesterday evening by someone I’d known for a long time, someone who’d visited me on ward 2 years ago and thought I might be able to help someone who’d come to them in despair.

The woman had recently been discharged from a mental health ward in the hospital where I’d been detained.  She was angry. Her world had falled apart. Her marriage had fallen apart. She was appalled by her treatment on ward. She wanted the hospital to hear what she had to say about her care, to know it was wrong. She wanted to meet with people who would know, through shared experience, what she had been through. Would I meet with her face to face to offer advice and support.

When I got home I sent this series of tweets which sets out my reaction to the question. I’ve also added in the responses of other tweeps, and there’s some good advice in there so take a look. Read the tweets to see my gut reaction at the time, or read on for a slightly edited version (tidied up from yesterday’s stream of consciousness), including my 10 tips.

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“Will you meet a woman who’s just been discharged from psychiatric hospital?” I was asked. “She’s so traumatised by the experience.  Her  world has fallen apart. She doesn’t know where to turn. She feels so angry about the experience.” More details were given about her difficult circumstances and how she wanted to make a complaint to the hospital but didn’t know how to do so or where to turn. “Can you meet her?”

“No,” I said. “No, I can’t meet her. I’m still too traumatised myself to take on someone else’s pain. I have to take care of myself first.” Her experience in late 2012 seems similar to mine in 2011. So nothing has changed. The hospital hasn’t changed, despite a programme of improvements to the physical environment. The culture hasn’t changed. Same leaders. Same nurses. Same bullying, abuse and poor care. I don’t want to relive it with someone else who’s suffered in similar ways to me, nearly two years later.

“Did you know,” I said, “that I was discharged requiring treatment for harm inflicted on ward? For mental trauma and a physical injury? That I’m being treated for PTSD from the ward experience? And I’m being treated by a physiotherapist for a restraint injury?” The trauma of being held in seclusion, forcibly treated, repeatedly restrained, yanked around by my arm by a bully nurse, has left scars that still need help to heal. I’m still vulnerable.

“Did you know,” I said, “that, when I raised a sample complaint with the hospital, I was disbelieved and blamed?” Which felt like being assaulted a second time. Making a complaint made me feel worse, not better. Much, much worse. I don’t want to go through that process again with someone else.

“Did you know,” I said, “that I have to measure carefully how I use my brain? To flex & strengthen the mental muscles but be careful to not stress or weaken them. Did you know,” I said, “that, although I tweeted all day about the Mental Health Act report, I’m not going to read it?” It would be too harrowing for me to read about others’ difficult experiences on ward. To read about forced treatment, restraint, seclusion, lack of care as being far too common an experience on ward. I look like I’m coping, but that’s because I’m practised at measuring out my energy so I can hold it together in public when I need to.

So no. No I won’t meet them. No I won’t offer support or comfort. Right now, for me, I want to meet happy people. To smile and laugh. To rest my brain. To enjoy life. To put clear blue water between me and the hospital experience. Having caring responsibilities before contributed to me landing up in hospital before. I can’t take on someone new to care for.

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“But,” I said, “I can give you some advice to pass on. Some things I would have wanted to know when I was discharged. That will still be some help.” Here are the tips I passed on:

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1. It’s good to have someone on your side. If you’re within 8 weeks of discharge, the ward IMHA should be able to help you make a complaint or get your voice heard. They know the ropes. Even if the ward IMHA can’t help you, your local branch of a mental health charity like Mind, Rethink or Sane may have advocates who can help you be heard.
2. PALS can also help you if you feel you’ve received poor care on ward.
3. If you feel like you want to be heard, that’s different from making a complaint. Hospitals will have a procedure to help you be heard, outside of a formal complaints procedure, and that may be a better option for you.
4. If you’re thinking about making a complaint, what end result do you want to achieve? What do you want to get out of it? Do you want “justice” and, if so, what would that look like to you? Do you want to get an apology? Do you want financial compensation? Do you want a review of procedures? It’s helpful to have an outcome in mind before starting the complaints process, to ensure it’s worthwhile going through it.
5. If you want to make a complaint, are you up to it at this time? As the saying goes, you cannot break concrete with a feather. Organisations can become defensive in the face of complaints. They can fight back. Is that something you want to deal with now? Weigh up the costs to you of doing so.
6. If you want to make a complaint, can you achieve the end result you desire by some other means? For instance, you can report poor care or abuse – anonymously or using your name – though the Care Quality Commission. They can send an inspector to the hospital or ward to check on care. That might lead to improved care for others in future.
7. If what you want is to know that you’re not alone, that there are others who share your difficult experiences, then one place to start is yesterday’s Care Quality Commission annual report on the care of patients under the Mental Health Act (voluntary and sectioned patients, and those under CTOs).
8. Don’t focus exclusively on the negatives of your hospital experience but make sure you also do positive things. For instance, find out what support services are available in the area which play to your strengths or develop new ones – eg art, creativity, music.
9. People you’ve met on ward can be a valuable support. They were there with you. They know what it was like. They’ll know what you mean when you talk about what happened. But also mix with people who nurture your sense of fun and make you smile.
10. Consider returning to the ward and thanking the staff who helped you, then walking away. Doing this helped one of my ward buddies to draw a line under the experience and move on.

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These are my tips, off the cuff last night. But what advice would you give to someone who’s just been discharged from a psychiatric ward? What would you have wanted to know? Please comment below.

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•  Storify story of tweets I sent together with responses of others – some great advice in there from other tweeps, so take a look
• Some tips from Wardipedia (the resource for inpatient psychiatric staff) of things to think about when planning for discharge, but a useful to do list post-discharge too
• Link to the Care Quality Commission‘s website where you can report poor care or abuse
• The CQC’s most recent report into the care of patients under the Mental Health Act – voluntary and sectioned patients (and those under CTOs)

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Monitoring the Mental Health Act: the CQC’s annual report

Today, the Care Quality Commission (CQC) published its annual review for 2011/2012 of its monitoring of the Mental Health Act. The Mental Health Act covers powers to detain people against their will in psychiatric hospitals, to treat people compulsorily outside hospital and the treatment of people on psychiatric wards voluntarily. CQC inspectors visit hospitals and other venues where the Mental Health Act applies in order to produce these annual reports.

The report covers such areas as:

• What is the Mental Health Act and how is it used?
• Are care plans focused on individual needs?
• Are patients involved their care?
• Are patients given the opportunity to give consent?
• Is there a culture of control over patients?

Below are some useful web links from the CQC, mental health charities, the social care sector & the media, together with my Storify of tweets throughout the day using the hashtag #MHAreport, as a helpful one-stop-shop today. If you have any helpful links to add, please tweet me or comment below.

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• My Storify story of tweets using the hashtag #MHAreport (last updated 5:30pm)

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From the Care Quality Commission:

• The Care Quality Commission’s annual report for 2011/2012 on its monitoring of the Mental Health Act
• The CQC’s 12-page summary of its report
• The CQC’s easy to read version of its report
• View key findings in the CQC’s infographic version of its report, for visual learners
• Link to large print version of the CQC report
• Link to audio version of the CQC report
• For comparison, a link to the 2010/11 summary report
• “What can a Mental Health Act commissioner do for you?” – Find out about the role of a CQC commissioner in this piece by Steven Richards
• “An inspector calls” – piece for mental health charity Mind by CQC inspector Edith on what inspections involve

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Comment from mental health charities:

• Comment from Marjorie Wallace, chief executive of mental health charity Sane, on the treatment of mental health patients in response to the CQC’s report
• “Our risk averse mental health system is wasting money and harming recovery“ – Paul Jenkins (chief executive of charity Rethink Mental Illness) writing in the Independent newspaper yesterday
• Response from mental health charity Mind to the CQC’s report
• “The Mental Health Act should only be used as a last resort and with extreme care” – Paul Farmer, chief executive of the mental health charity Mind, in the Huffington Post

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Comment from the social care sector:

• “Action needed on Mental Health Act report as patients and social workers suffer” – Andy Nicholl at social care website Community Care, published today
• “Severe pressure’ on AMHPs amid job cuts, rising workload and bed shortages“- Andy Nicholl at social care website Community Care, published today
• “Often “good practice” in Mental Health Act detentions is no more than basic human rights” – Andy Nicholl at social care website Community Care, published today

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In the press:

• “CQC mental health report finds ‘containment over care’: some mental health services have “allowed cultures to develop where control and containment are prioritised over care”, a report says” – BBC news
• “Some mentally ill patients may be unlawfully detained due to errors in medical records” – Daily Mail newspaper
• “Mental health patients being ‘detained in all but name‘: The Care Quality Commission finds mental health patients denied information, and staff inadequately trained” – Guardian newspaper
• “CQC criticises mental health provision” – GP magazine Pulse
• “Mental hospitals ‘treat patients like prisoners‘” – Independent newspaper

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On radio:

• Radio 5 Live radio call in: overcrowding on mental health wards puts patients at risk of abuse & neglect, with Victoria Derbyshire (30 January)
• BBC Radio Norfolk: Chris Goreham at breakfast radio phone-in. Staff are the treatment in mental health services yet 20% cuts planned in Norfolk & Suffolk (from 7 mins 30) (28 January)
• BBC London: Drivetime with Eddie Nestor. The CQC’s report found overcrowding & containment was prioritised over care (from 16mins) (30 January)

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