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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Help yourself! What are your favourite free online mental health resources?

My photo of Souzou: Outsider Art from Japan at Wellcome Collection

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More links have been added below (scroll down) – please keep them coming!

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In the resources section of my website, I have a little page tucked away entitled self help. It’s where I’ve posted links to useful online resources to help you manage your mental health. It’s a random collection of what I happen to have stumbled across, mostly on twitter. I have to admit that I haven’t tried any of them personally – but they come highly recommended.

I’d like the page to be as helpful as possible – and I also know there will be things out there that I’d find useful myself, if only I knew about them! – so I’m inviting suggestions of free online resources that you have used and found helpful – or, alternatively, ones that you’d recommend people steer clear of! I’d like to mine the hive mind and see what we can come up with to help ourselves – so we can side-step those pesky waiting lists for treatment or do our best whilst waiting for treatment.

So far, my self help page includes links to three areas:

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Free online cognitive behaviour therapy (CBT)

What is CBT? As Living Life to the Full describes it, “CBT is a structured form of psychotherapy that aims to alter the unhelpful thinking (cognitions) & behaviour that commonly occur during times of distress.” The 4 resources I’ve come across so far are:

• e-couch – An online programme for preventing and coping with depression, generalised anxiety disorder and social anxiety
• Living Life to the Full (twitter @llttfnews) – This was recommended to me during a ward round. It’s a free life skills resource teaching practical skills using CBT. The strapline is, “Be happier, sleep better, do more, feel more confident” – which sounds pretty good to me!
• MoodGYM – An Australian National University training programme that teaches CBT skills for preventing and coping with depression.
• Moodjuice – A site developed by Choose Life Falkirk and the Adult Clinical Psychology Service, NHS Forth Valley. The site is designed to offer information, advice to those experiencing troublesome thoughts, feelings and actions.
  

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Free online mindfulness

What is mindfulness? It’s a method of mental training, a simple form of meditation that can be quite quick to do – and can be done any time, any place, anywhere. The resources below include guided mindfulness exercises you can listen to online or download for later.

• Frantic World – Free meditations from mindfulness, taken from the book ‘Mindfulness: Finding Peace in a Frantic World’. The book contains the complete 8 week mindfulness course developed at Oxford University.
• Free Mindfulness – A collection of free-to-download mindfulness meditation exercises.“
• Mindful – Free online audio and video mindfulness instruction, online courses in mindfulness and other resources
• UCLA Mindful Awareness Research Centre – Free guided meditations

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Free online bipolar disorder resources:

• Beating Bipolar – “Beating Bipolar is an interactive internet based programme that aims to improve understanding of the condition. It includes video of professionals and people with lived experience of bipolar disorder and discuses various approaches that many have found to be beneficial.”

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Have you used a free online resource that’s helped (or hindered!) you to manage your mental health? If so, I’d really appreciate it if you could share that with me – so I can share that with the lovely twitter people and readers of this blog. I know you’ll have some great ones, so I’m really looking forward to being able to add them to this blog … and thank you in advance!

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UPDATE: Here are some of the fab links I’ve been sent already (they’ll be added to the self help page shortly):

• B-ead “Have a word with yourself” – Not so sure about this one: on the one hand it gives a way to challenge negative self-talk; on the other, you’re wading through a whole lot of negative statements to find the right one that applies to you to therefore find the specific statement to counter it! Website for young people on eating disorders. HT Deborah Lynn Oakley (twitter @DebsLinn)
• Get Self Help – Lots of CBT self-help resources. HT Sarah Davidson (twitter @sasperella21)
• Get Some Headspace – There’s a free app (plus a paid option) on this meditation website recommended by Ermintrude (twitter @Ermintrude2) and Frances Uku (twitter @missuku)
• Medical students’ mental health website from Dundee University medical school’s psychiatry department (twitter @DundeePsych) –  Covers topics under the following headings:
  • I need help now
  • I’m ok- how do I stay well?
  • I’m unwell – I’d like more info
  • My friend is unwell
• Mindfulnet – “Everything you need to know about mindfulness in one website” apparently! HT Sarah Davidson (twitter @sasperella21)
• Psychology Tools downloads – Free downloadable CBT worksheets, formulations, and self-help resources
• Storify story with some more suggestions (to be added to the blog!)

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What’s it really like to live with mental illness? Stephen Fry, bipolar and suicide

Banner from Stephen Fry’s website

Yesterday, Stephen Fry – actor, comedian and writer, national treasure and president of mental health charity Mind who has a diagnosis of bipolar disorder – spoke about his 2012 suicide attempt. Today, the press reported the suicide attempt of Michael Jackson’s daughter Paris and speculation about a diagnosis of bipolar disorder. The day’s press has been full of reports of these stories, together with supposedly contextual information on bipolar and suicide. Sadly, coverage I’ve seen so far has been unhelpful to those managing mental health problems and those wishing to know more about them.

As I tweeted earlier:

“I think if you’d just been diagnosed with bipolar & read that piece, you could think your life was over. There’s nothing to give you hope.”

This is the piece on Stephen Fry & bipolar disorder that got me started. Written by BBC health and science reporter James Gallagher and tweeted by the Royal College of Psychiatrists, at first glance it appears informative and well written: it quotes a scientific study, includes quotes from Fry himself as well as a mental health professional and a mental health charity, and includes links to sources of further information. So far so good.

However, look closer and the piece is a load of clichés linked together into a web of misleading hogwash. What are the problems with the article? Here’s a quick whizz through:

• Speculation: “There are suggestions that at least a quarter and maybe even half of patients make at least one attempt.” Suggestions? You’d want to be really sure before delivering such a miserable prognosis to the legions of people in the UK who experience bipolar disorder.
• The black and white characterisation of bipolar disorder as consisting of mania and depression, when it is far more nuanced.
• The description of mania as being “extreme happiness and creativity”. Which really sounds like something we’d all enjoy!
• References to “hypermania”, which has become the grey squirrel to hypomania’s red squirrel across today’s media coverage, the former existing only in journalists’ spellcheckers. I call it Hypermania Cluster Disorder; or “I’m too lazy to check the spelling for this pop science piece I’ve been told to write”.
• Bald statements such as “There is no cure for bipolar disorder” deliver a bleak prognosis without recognising that, for instance, many people experience differing diagnoses throughout their lives. If someone’s diagnosis changes, are they cured, did they never have the disorder in the first place or does it reflect differences in clinical judgment?
• Linking bipolar disorder to drink and illicit drugs, which some people objected to on Twitter today since they’d never taken either.
• Only passing reference to the fact that, for many people, bipolar isn’t a second by second living hell but an episodic experience – a relapsing and remitting condition, in the jargon.

On the one hand, it’s good to see pieces in the media about serious issues like bipolar disorder and suicide: for too long, mental illness has been a secret shame kept hidden in the shadows. Yet, on the other, it’s not good to have misleading cliches & miserable hope-destroying myths doing the rounds.

A diagnosis of serious mental illness shouldn’t be a death sentence. Yet pop pieces like this make it sound like it is. Millions of people are getting on with their lives, passing by in the streets, buying their lunch, sitting on buses, managing conditions. The reality of living with a mental health condition isn’t reflected in articles like these.

As Mental Health North East (support for the north east mental health voluntary sector) tweeted:

“Was half expecting the article to contain a photo of Stephen Fry clutching his head on current BBC form #headclutcher“

This story again raises for me a question I often ask: who speaks for mental illness? Who speaks for those of us managing mental health problems? Who speaks out with information in the face of a breaking story where the media’s emphasis is on speed rather than accuracy, on getting your story out there rather than educating and informing? Today’s stories, whilst on the surface being about the dramatic event of a suicide attempt are, underneath it all, really about what sometimes happens in the day to day realities of living with and managing a mental health problem. Where have we heard that story reported today?

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Below I’ve linked to people’s first hand experiences of managing bipolar disorder as well as sources of information, together with commentary and news reporting of today’s stories (if you don’t know where to start, try the commentaries and first hand experiences).

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• My twitter conversation on this topic (Storify); and here’s part 2 (my later discussion with Irish psychiatrist Dr Niall Crumlish)
• BBC news – Stephen Fry: Suicide risk in bipolar disorder – the original story that got me started
• Stephen Fry’s website

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Commentary following the reporting of Stephen Fry’s 2012 suicide attempt:

• Black Dog Tribe – Stephen Fry reveals he attempted suicide in 2012 (6th June)
• British Comedy Guide – Stephen Fry reveals attempted suicide (5th June) – where the story was originally reported
• Charlotte Walker (twitter: @bipolarblogger) – Count no blessings: how a suicidal mind works (5th June)
• Mind – Stephen Fry’s story shows we still need to talk – by Tracey Pallet (Twitter: @EhOhSaysYes) (6th June)
• Samaritans – Comment piece: the attempted suicides of Stephen Fry and Paris Jackson (6th June)
• Time to Change – What Stephen Fry’s conversation about suicide means to me – by Mrs Shea Wong (Twitter: @MrsSheaWong) (6th June)
• Secret Diary of a Manic Depressive blog by Seenean Molloy-Vaughan – Stephen Fry, suicide and the cycle (6th June)

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First hand experiences of bipolar disorder:

• The Fementalists blog – Ask a woman with bipolar part 1 & part 2 – 4 women talk about what it’s like to live with bipolar disorder
• Fighting for Euthymia blog by Helen Moreton (Twitter: @gingersquirrel) – Crying at Work (14th April)
• Purple Persuasion blog by Charlotte Walker (Twitter: @bipolarblogger) (winner of the Mood Disorder category in the 2012 World of Mentalists Awards)  has lots of pieces on the day to day realities of managing bipolar disorder – some recent examples are The Court of Protection, motherhood and mental health, Bipolar highs: a runaway train & Pride and pragmatism
• Secret Diary of a Manic Depressive blog by Seaneen Molloy-Vaughan, has lots of pieces on the day to day realities of managing bipolar disorder – some recent examples are When you find the changing seasons affect you without reason, Saw GP today & I Smoked All of England’s Cigarettes: Mental Illness and Smoking
• Shea Wong‘s blogs on bipolar disorder for Time to Change

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Sources of information on bipolar disorder:

• Bipolar UK charity
• Mind charity – information on bipolar disorder
• Rethink Mental Illness – information on bipolar disorder
• Royal College of Psychiatrists – information on bipolar disorder
• Sane charity – information on bipolar disorder
• Time to Change – Bipolar disorder: blogs and personal stories (first hand experience by bloggers with bipolar disorder)

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Some information on suicide:

• Mind charity – how to cope with suicidal feelings
• Samaritans‘ guide to journalists on reporting suicide

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News coverage of Stephen Fry’s 2012 suicide attempt:

• BBC news – Stephen Fry reveals he attempted suicide in 2012 (5th June)
• BBC news – Stephen Fry discusses his 2012 suicide attempt (3 min video) (6th June)
• Huffington Post – Does fame make you more suicidal? – Dr Raj Persuad & Dr Peter Brggen (6th June)
• Guardian newspaper – Stephen Fry: recent attempted suicide a ‘close-run thing’ (6th June)
• Independent newspaper – ‘I am the victim of my own moods’: Stephen Fry reveals suicide attempt in 2012 and that TV producer saved his life & Stephen Fry suicide bid took place soon after confronting protesters while filming ‘gay cure’ documentary in America (both 6th June)
• MSN news – Bipolar disorder: the secret life of a manic depressive – by Seaneen Molloy-Vaughan (6th June)
• Telegraph newspaper – Stephen Fry: I attempted to kill myself in 2012 (6th June)

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Mental capacity, mental illness and pregnancy – Miss B and the “bipolar abortion” case

Some thoughts (here, here & here) on the recent case of Miss B, a woman in  her 30s with a diagnosis of bipolar disorder who was sectioned to prevent her from exercising her reproductive health choices. She had to go to court and reveal the most personal details of her psychiatric and gynaecological health, as well as her sexual history, in order to be able to do so. In the end, just a few days before the legal time limit for abortion, the judge in the case came down very clearly on the side of mental capacity.

It’s all set out in the tweets (including conversations with a psychiatrist and a Mental Capacity Act trainer, as well as a woman of reproductive age with a bipolar diagnosis). I may put it into written form but here it is for now. It’s something that I and a lot of women of reproductive age feel strongly about.

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My Storify stories:

• Mental capacity, mental illness & pregnancy – part 1 (twitter discussion of the case) (21st May)
• Mental capacity,mental illness & pregnancy – part 2 (conversation with consultant psychiatrist Judith Lewis) (29th May)
• Mental capacity, mental illness & pregnancy – part 3 (conversation with Mental Capacity Act trainer Matt Graham) (30th May)

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Legal links:

• The Court of Protection judgment in Re SB (A patient; capacity to consent to termination)  [2013] EWHC 1417 (COP) 21 May 2013 – the judge’s comments in full (21st May)
• Mental Capacity Act 2005
• UK Human Rights blog – Bipolar patient has capacity to decide to terminate pregnancy (24th May)

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Commentary:

• The Fementalists blog – The bipolar and abortion case (22nd May)
• Purple Persuasion blog (Charlotte Walker) – The Court of Protection, motherhood and mental health (29th May)

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Media:

• BBC news – Bipolar disorder woman in legal battle over abortion (21st May)
• BBC Radio 4 – All in the Mind – “Could what seems like a very unusual case have implications for anyone with a mental health problem when it comes to what they can and can’t decide for themselves?” (12th June)
• BMJ (British Medical Journal) – Woman with bipolar disorder can abort her baby, judge rules (24th May)
• Daily Mail – Bipolar patient who is 23 weeks pregnant CAN have an abortion as she is capable of making the decision herself, rules High Court judge (22nd May)
• Huffington Post – Pregnant Woman With Bipolar Disorder ‘Begs Court To Allow Her To Have An Abortion After Ceasing Medication’ (21st May)
• Independent newspaper – Bipolar woman wins High Court battle for right to have abortion (21st May)
• Telegraph newspaper – Woman with severe mental disorder given right to have abortion by judge (21st May)

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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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