Some reflections by a retired nurse on asylums old and new

 

Earlier this evening, I had a fascinating conversation with a relative who’d trained as a learning disability nurse in the 1960s. She shared her memories as a nurse, visitor and  patient at Coldeast Mental Deficiency Colony, Littlemore Asylum, Digby, Langdon, Tone Vale and other hospitals.She had some interesting observations on the differences between the old asylums and modern psychiatric hospitals.  It was hard to tell if it was pensioner nostalgia or if things really were, on balance, much better in the old asylums. But that was her clear view.

She spoke about the old asylums, on the outskirts of town, each having a home farm where patients would work, have a purpose, be outside and contribute to the life of the institution. Of patients cleaning the wards, nurses helping too, of real hands-on nursing, of vocation, of the matron closely supervising the ward, of strict hygiene standards that meant, for instance, never sitting on a patient’s bed. Of food cooked on the wards, and nurses trained in cooking too in case there was no one else there to do it. Of the value of good routine, of having to boil the needles and bandages, of having to manage patients without drugs, of highly-trained staff.

She spoke of parents being persuaded to abandon their ‘mentally retarded’ children, to leave them behind and get on with their lives. Of how wrong that was and of how people could contribute so much to society if they had routine jobs. That seemed her one regret from those times.

She spoke of nurses needing to get at least two years’ experience before they could go on the wards with the more difficult patients. Of how patients would be matched to particular nurses, as some patients could be violent from time to time and you had to know how to relate to them. Of how the experienced staff, strict routine and a pride in their work created a secure and stable environment for patients and staff alike.

And she spoke of how things had started to ‘go down the pan’ in the 1970s when, for the first time, staff could use drugs to ‘keep patients quiet’. Of how younger staff were recruited, how routine slipped, how patients were left to do as they wanted, neglected and ‘drugged up to their eyeballs’. Of seeing the nurses’ pride in their job dwindling, of staff having affairs with each other, of hygiene standards slipping. She’d seen this in residential and nursing homes too: residents drugged to keep them quiet, one perhaps two staff on overnight, and little care.

And then she compared her time working in the old institutions with her recent experience of care in a brand new psychiatric hospital. She said, when she was a patient herself, the staff were ignorant about mental health, and some nurses were ‘really nasty’. Staff congregated in cliques or in the staff room. They didn’t mix – ie care for – patients. At night, nurses would be on their smart phones and would brush her away when she tried to talk to them. Of how the ward phone was kept locked in the nurses’ office, so patients couldn’t contact the outside world except with staff permission. (That’s a recipe for abuse behind closed doors, if ever there was one.)

She spoke of there being no facilities for exercise – and, when she went in, she was used to walking miles. How she got fatter & fatter. That there was a small internal courtyard but she wasn’t allowed in it in case she ‘climbed over the wall’ and escaped. How she was finally, after several weeks, allowed into the courtyard and would then walk round and round and round. How there was a swimming pool and gym elsewhere on the hospital site, but the nurses wouldn’t take her there. How she badly missed activity. How she came out of hospital far more unhealthy than when she went in, physically.

How nursing had become more technical, and nurses had more status now, but had lost the basic hands-on skills. How nurses nowadays had lower hygiene standards and no idea about cross-infection control. How hospitals needed highly-trained staff but how the staff who’d treated her didn’t have sufficient training. How nursing was just a job now, not a vocation.

It was fascinating listening to her experiences as staff, visitor and laterly patient starting in the 1960s and running right through to the present day, and the comparisons she made.

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Related links:

• My tweets on the subject earlier this evening
• Some reflections of the lovely twitter people
• An old blog post – The economics of the lunatic farm – and farming!
• Reflections of a retired nurse on the history of bipolar disorder going back to when she trained in the 1950s (on Bipolar Blogger’s blog here and here) (2013)

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Should we be worried about the rise of antidepressants? #PillShaming

Another post where I’ve set out my thoughts in tweets and hope to write it up into a blog post but, in the meantime, here are the tweets:

• My tweets and retweets on #pillshaming – What it is, what’s wrong with it and what can we do about it, following the piece by the same name in today’s Indendent in which I’m quoted by writer Rachel Hobbs (formerly of Rethink Mental Illness)
• Some responses of the lovely twitter people
• A conversation with US psychiatrist Allen Frances whose a firm believer in the evils of Big Pharma as drug pushers and doctors handing out happy pills like sweeties

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Related links (in date order):

• Independent – Should we be worried about the rise of antidepressants? – “Mental health funding has been cut for three years in a row, while demand is increasing. With news that prescriptions for antidepressants in Britain have doubled over the last 10 years, some say this shows people are being medicated unnecessarily, but is it that simple?” – By Rachel Hobbs (today) (quotes me)
• Guardian – Spare us the moralising on prescription drugs. Many of us need them – “Calling us ‘pill poppers’ makes it sound like a fun lifestyle choice. Do high cholesterol, post-op pain or depression sound like fun?” – By Fay Schopen (December 2014)
• British Medical Journal  – Overprescribing antidepressants: where’s the evidence? By Dr Margaret MacCartney (June 2014)
• British Journal of General Practice – Appropriateness of antidepressant prescribing: an observational study in a Scottish primary-care setting – Study reported in the journal of the Royal College of General Practitioners (2009)

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Do you remember your first time?

My bedspace after one incidence of forced treatment when I was restrained and injected on my bed by six people.

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Patient: When you’re unwell you need care. And what I got was punishment. So when I was unwell I was extremely stressed and I was anxious. And I was taken by the police from my bedroom, unlawfully as it turned out, erm, from my bedroom into hospital where I was assaulted by patients and staff and I was held down and drugged repeatedly. And nobody came and spoke to me and said this is what’s happening, this is the diagnosis you have, we think you’re experiencing this and this drug will help you. Nobody came and spoke to me. And instead what they did was I would just be on my bed, reading a book, or not reading a book, couldn’t read, I would be on my bed, doing something, minding my own business, and I would turn around and there’d be a team of six people with rubber gloves who would hold me down [Starts to cry], pull my trousers down and drug me. They didn’t tell me what the drug was, they didn’t tell me what the effects were, they didn’t tell me what to expect, they didn’t tell me how long it would last, they didn’t tell me what it was for. Nothing. And they would finish and they would climb off my bed and they would walk away. And I wouldn’t know when they would come back. And they did that, erm, over and over and over and over again over a period of several days. I don’t know what they were giving me and I only found out after I left and saw my medical notes some of the drugs they were giving me. Sometimes they’d make a mistake and they’d give me drugs twice. Even though I went to the counter to get my drugs, take them voluntarily, they would still hold me down and give me other drugs. [In a strong voice, stops crying] So in that context I don’t think medication was helpful. The approach was unhelpful. What that approach does is it makes people afraid to ask for help.

Interviewer: It’s incredibly brutal. Can I go and get you a tissue?

Patient: No, no, I come prepared. I always have tissues with me.

Interviewer: Are you okay to …

Patient: Yeah, yeah, I’m fine.

Interviewer: And that was your first experience of medication as well?

Patient: Exactly. I don’t, I don’t take … Well, before this experience, I didn’t take anything. I didn’t take aspirin, I didn’t take paracetamol. I didn’t even drink coffee. You know, I didn’t take any drugs. I had a fear of drugs. I had a fear of needles. I have low blood pressure so if you give me a needle I’ll faint. So if you want to give me a needle I need to be lying down, I need to be calm and then … Whatever. So, er. So I’m, you know … Now I know a lot about drugs. [laughs] I know a lot about drugs. Erm, before that, no, that was my, that was my first experience of drugs.

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Do you remember your first time? I do. I remember the first time I was treated by force. I remember it very well. The account above is an unedited segment from the transcript of my February 2012 interview with a researcher. In it, I briefly describe my first time being treated by force. That interview was also the first time I’d been able to speak to anyone in detail about what had actually been done to me in hospital. I knew it would be difficult and emotional, but I forced myself to take that first step in speaking out as part of a research project. It was six months after I’d been discharged from an acute inpatient psychiatric ward but, even so, I was floored for a week by the emotion of the interview.

Then, the following month, I found myself tweeting in bursts, over the course of several hours, about my experience of being treated by force. That was the first time I’d conjured up those images in detail and written them down for others to read. As I tweeted, I shook, cried, felt sick – but kept going. I couldn’t turn it into a full blog post but instead wrote a short one (Treated like an animal) linking to the collated tweets. I hadn’t read them back till just now: I couldn’t. That blog post and collated tweets have since been read thousands of times.

Three months later, in June, mental health charity Mind launched a campaign to end use of face-down restraint on psychiatric wards and that prompted me to write about forced medication again (Restraint – 10 ways it harms psychiatric patients). That post was read even more times than the first, though the toll in writing it was, thankfully, less on me. That was because, this time, I wasn’t conjuring up images of what it was like to be forcibly medicated in order to convey a picture to the public: it was a more considered overview of the topic. Almost a year after discharge, it seemed I’d begun to attain some distance from what was done to me.

Then, in November of that same year, the interview transcript arrived and a mental health charity asked me to write a piece for them about my experience of forced medication for their campaign. I forced myself, again and again, to sit down and bring to mind, in great detail, what it was like, so the reader could envisage themselves there, in the moment, being on the receiving end themselves. It took a heavy toll on me emotionally. Trying to edit it was toughest. Trying to take my raw recollections and shape them into something suitable for a mainstream audience without being overwhelmed by the intensity of the recollections. In the end, I couldn’t submit the written work. (It’s languished on my computer for 2 years, and I’ve only just looked at it. And I’ve only just glanced through the research interview transcript.) What that reinforced for me was that speaking or writing about forced treatment is a part of a healing process for me and something I cannot conjure up to order: it has to naturally arise from me when the time is right. I have a diagnosis of post-traumatic stress disorder as a result of what was done to me in hospital, and that’s just what I’ve got to work with.

It was another four months before I wrote about forced treatment again, in March this year (Forced medication: resistance is futile). I was able to write my first proper blog post describing one aspect of it. Compared to 12 months earlier, I noticed that tweeting about the topic (almost all my blog posts arise from tweets!) had been less overwhelmingly painful and that I’d been able to go back afterwards and edit the tweets into a blog post. It seemed as if I was naturally and instinctively keeping a distance from something that had injured me to the core, gradually circling round it and every now and then being able to touch on the subject. It seemed that, each time, after several months had passed, I was able to return to the subject with a little less terror.

So here I am, 8 months later, over 3 years since I was discharged from hospital, writing about forced treatment again. Circling the subject again, adding a little more depth, noticing that I can now approach it with a little less pain, with fewer flashbacks and  physical responses.

And what is new this time I’m writing about forced medication? It’s not a topic I’ve seen discussed much on social media or in the mainstream media. But then, it’s not something I’ve been able (emotionally) to investigate. However, I have been aware (very much at arm’s length) of campaigns to reduce the use of physical and chemical restraint and seclusion related to what’s called “challenging behaviour”. These include Mind’s campaign to end the use of face-down restraint and Mersey Care NHS Trust’s No Force First pilot to create coercion-free psychiatric inpatient wards. I’m also aware of research on conflict and containment in inpatient psychiatric settings which highlights that it’s staff, not patients, who influence how much of each there is likely to be. There may well be research and discussion on forced medication that’s passed me by, and please do let me know if you come across any.

For me, forced medication is very much a separate topic to use of force in situations of danger (to the patient themselves or others) or conflict (such as verbal abuse or violence). Forced medication is about a psychiatrist deciding on a course of treament (medication) and leaving ward staff to get on with administering that. It seems to me there are no controls over use of forced medication, other than the good will of staff and we already know that, when one group of people is given power over another, it may not always be a benevolent dictatorship. Even with the best of intentions, shortcuts can be taken – and using force to medicate someone is the ultimate shortcut – and staff can become aclimatised to routine use of force.

Here, then, are my recommendations for reducing the use of forced medication and thereby the harm it causes:

1. Collation of national statistics on use of forced treatment – Make it compulsory to record each use of forced medication and to report it nationally. That way, national statistics and a picture of best practice can emerge as the basis for comparisons and for developing evidenced-based interventions. That will necessitate development of standard definitions of forced treatment, particularly since my medical notes record “No restraint employed” in relation to the first incident of forced medication. So, for instance, I would include (but in different categories), where use of force is mentioned to a patient in order to coerce them to take medication “voluntarily”; where the medication “hit squad” attends and stands near a patient to encourage them to take the medication “voluntarily”; and what was done to me (ie the full 6-person take-down). Make use of forced treatment a notifiable process (like a notifiable disease): it’s such an invasive process – state-sanctioned assault on someone at their most vulerable – that there cannot be a justification for treating it in such a slapdash way.
2. Earning the right to use forced treatment – Make use of forced medication a right which must be earned, each and every time, by exhausting every alternative option beforehand. It may suit some ward staff to go straight for forced medication as a short-cut for ward management purposes. However, patients are people who exist beyond the locked ward and will do so once they are discharged, and forced treatment can have damaging effects in the medium and long term. Forced treatment can cast a long shadow. It should never be a first resort. The Code of Practice to the Mental Health Act sets out strict conditions for use of physical restraint but forced medication is nodded through under the guise of general principles. Clearly that approach is not working, meaning that detailed guidance on the prerequisites for the use of forced medication, in the same way as they are for restraint, are necessary.
3. Debrief patients after each use of forced treatment – I’ve seen on documentaries (such as ITV’s recent series Broadmoor) that, when a patient is physically restrained and forcibly medicated, afterwards staff meet to discuss and debrief. All the while, the patient – who’s just been subjected to what, at the very least, could be described as a highly intense experience – is left in their bedroom or bed space alone to try to work through their responses. I recall time and again being left face down, underwear and trousers askew, in sheets covered in bootprints on a bed pushed out from the wall, empty antiseptic wipe packets on the floor. I’d be left shocked, terrorised, humiliated, confused, frightened, to clear up my bedspace, somehow get hold of clean sheets and somehow work out how to, well, be on the ward again. Patients need a debrief just as much as staff. Or perhaps more. After all, they are the vulnerable ones, there to be healed, not brutalised. Witness a patient’s pain. Be there to comfort them. Help them work their way through the experience.

I shouldn’t be left, over 3 years after discharge from hospital, still being triggered into flashbacks by obvious reminders like the photograph above or the word “restraint”, let alone such seemingly innocent stimuli as the flicker of fluorescent lights, the hum of air conditioning or traffic cops chasing a motorist on TV. Treatment is supposed to help patients. No patient should ever leave the ward more harmed than when they went in, too scared to ask for help in future and only referring to “that place” in hushed tones. Good psychiatric inpatient wards exist all over the country. Hopefully these three proposals are a helpful addition to dialogue around ridding the psychiatric system of forced medication by learning from those who use it least.

 

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Related web links:

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My previous posts on forced treatment (each containing links):

• Treated like an animal – My first blog post on forced treatment (March 2013)
• Restraint: 10 ways it harms psychiatric patients – My second blog post on forced treaatment (June 2013)
• Forced medication: Resistance is futile – My third blog post on forced treatment (March 2014)

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On restraint, conflict and containment:

• Mersey Care NHS Trust – ‘No Force First -Changing the culture to create coercion free
  environments and press release (October 2014)
• Mind’s campaign to end face-down restraint (ongoing – various stages since 2011)
• Dr Chris Papadopoulos et al:
  • Events preceding changes in conflict and containment rates on acute psychiatric wards – “Ward staff play a crucial role in influencing the likelihood that conflict or containment events will occur in inpatient psychiatric settings.” (January 2012)
  • The antecedents of violence and aggression within psychiatric in-patient settings – “This review underscores the influence that staff have in making in-patient psychiatric wards safe and efficacious environments.” (June 2012)
  • Correlation between levels of conflict and containment on acute psychiatric wards – “Wards can make positive changes to achieve a low-containment, nonpunitive culture, even when rates of patient conflict are high.” (May 2013)

 

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How’s your day been? A Day in the Life

How’s your day been? That’s a question you’ve probably asked many times, and been asked a fair few too. It’s part of the normal everyday engagement between people that oils the social wheels. Often it’s not a genuine enquiry in the sense that a detailed response is not expected: instead, it’s a baton being passed, with you expected to pass it back and say, “Fine thanks. How about you?” That “fine” can mask a lot of days that aren’t fine, whether better or worse, but we’re all expected to join in the general cheerleading, pretending to be “fine” too.

For people struggling with mental health problems or managing a long-term mental health condition, how our day has been is probably a bit of a mystery to the general public. This can be a source of assumptions, stereotypes and prejudice, whether that’s the “lazy faker” of depression who just needs to take themselves in hand and go for a brisk walk; or the “dangerous maniac” of schizophrenia who should be monitored and contained for public safety. These prejudices and stereotypes can feed into self-stigma that brings about a sense of isolation.

Our daily lives are also likely to be a bit of a mystery to the professionals who provide our care, whether that’s a therapist an hour a week, 20 minutes with a psychiatrist every 3 months or 10 minutes with a GP every few weeks. What it’s actually like to live with a mental health problem can be pretty uncharted territory unless you’re doing it yourself or living with someone who is. There’s so much more to good mental health, and to good mental health services and support, than the NHS, drugs and talking treatments. People just like me are out there, living our lives, quietly getting on with things day to day, and there’s a new project that aims to capture that reality. It’s called A Day in the Life.

A Day in the Life (the mental health project, not the Beatles song) asks people with mental health problems to share what their day has been like – and what has helped or made the day worse – on four set days over a year.

The project aims to shine a light on the everyday lives of people with mental health problems to raise awareness and to help the general public better gain a better understanding: to challenge myths and bust some stigma. It also aims to get people who may never have blogged before writing about how their day went – and perhaps then finding an online voice they never knew they had. There’s guidance on how beginner bloggers can start writing.

But another objective – and the reason the project is funded by Public Health England – is to help policy-makers understand what makes a difference – good or bad – to the lives of people with mental health problems. Although not a scientific study, the project will provide an insight to help influence policy decisions on services provided in future. The online snapshot diaries will also help to highlight emerging themes and suggest future areas for investigation.

I’ve signed up to take part in the project and have already posted my entry for the first day, Friday 7th November. The remaining three days will be in winter, spring and summer 2015.

Follow the project on twitter using hashtag #DayInTheLifeMH and scroll down to find out more about the project and how you can take part.

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Below is my entry for 7th November, which will appear on the Day in the Life website when everyone’s contributions so far – totalling around 370 – go live on Monday 17th.

Please note: I chose to speak very candidly about what I experienced that day, so please read with care if you’ve been affected by suicide, suicidal thoughts or depression – or simply scroll down to the bottom where you’ll find useful links.

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I’m on Twitter – a lot! So, as usual, after turning off my alarm, the first thing I did this morning was to check what tweeps I follow had posted, to catch up on news in the mental health world. Then, returning to bed with breakfast and my pet, as it was the last day to sign up to #ADayintheLifeMH, I sent out a series of tweets to encourage as many people as possible to sign up. The more sign-ups, the more varied a picture of living with mental health problems it will provide.

Next, I checked what had been happening on the #SamaritansRadar hashtag. Samaritans Radar was launched by the Samaritans in October and, ironically, had had a disastrous impact on the Twitter mental health community. Numerous tweeps had contacted the Samaritans by Twitter, email, phone and letter to beg them to take the secret automated surveillance and alert app offline. Experts in various different professions had written about legal and ethical concerns. Mental health experts by experience had blogged about their pain and distress. There was an online petition, an investigation by the Information Commission and even a group proposing legal action against the Samaritans. I was involved in the campaign to have the app taken offline till it could be made safe.

On checking Twitter, it was clear that the outcry was continuing. And the Samaritans had tweeted their followers about A Day in The Life Mental Health!

Next, I tried to work on a blog post about the app. The powerful psychiatric medications I take have an impact on motivation, focus and concentration and, since I’d started taking them, I couldn’t quite connect the dots. It was cripplingly frustrating and is one reason I spend so much time on Twitter: 140 characters just about matches my attention span! Being sedated so your higher functions no longer work properly makes it hard to manage a home and get everyday tasks done, let alone get anywhere near organising your own healthcare in a system that relies on people being pushy. Being a sedated blob doesn’t get you very far and is one reason I haven’t been able to get proper treatment for myself over 3 years since I was discharged from hospital. Here I am, still parked on welfare benefits.

I struggled for a while to try to gather together my thoughts on Radar down on paper, but was unable to do so. I tried to make an overdue phone call, but couldn’t. So I had lunch, then caught the bus to a medical appointment.

Later, as I walked back through a tree-lined park on a beautiful autumn afternoon listening to the radio, I heard a trailer for this evening’s BBC Radio 4 Any Questions saying that one of the topics the panel would discuss was the Assisted Dying Bill. This caused my own “suicide radar” to go off.

Ever since getting notice of eviction from my home so my landlord could sell it (2 months’ notice, out of the blue, after over a decade), I’d been tipped into a deep, debilitating depression. At times, I was utterly tortured by suicidal thoughts. My home had been my security and stability and now I was losing that. And the awful Radar app had thrown a spotlight on suicide, meaning my Twitter feed was full of intellectual suicide talk.

Suicide was being discussed as a fascinating concept, rather than what it was to me and many other mental health folks using twitter: a very real mental pain we were struggling with at that very moment. At times, it seems as if there’s a part of my mind monitoring everything just in case it might be useful in some way in despatching myself – my own “suicide radar”. That’s why the Assisted Suicide Bill caught my attention. Being able to die with dignity alongside friends and family – rather than experience years of unalleviated suffering or go for a secret and uncertain DIY method –  was an option I’d like to have available too.

I’ve had thoughts about suicide in all sorts of places, with all sorts of people and whilst doing all sorts of things. Sometimes I’ll be plagued by all-consuming thoughts of suicide; other times they’d be a background hum, like a reflex response to every turn of events, a mental tic; and sometimes, as today, there’d be calm planning. These thoughts were going through my mind as I walked through the warm autumn afternoon, kicking up piles of fallen leaves. No-one looking at me would have known.

Back home, I checked Twitter again. At 6pm, the Samaritans tweeted to say that, after 10 days of uproar, the Radar app had been suspended! It was a begrudging statement which did not acknowledge the distress the app had caused, and the so-called apology was an example of how not to apologise. But, nevertheless, the announcement meant that mental health folks could sleep easier in their beds over the weekend. I continue to feel uneasy as to what “suspension” means in practice. Whilst no-one doubts the app was developed with good intensions, the way it was imposed on everyone had damaged trust in the Samaritans.

I spent the evening debating with people on Twitter about Samaritans Radar, listening to Any Questions, then retiring to bed to read Everyday Medical Ethics and Law. It didn’t use to be my sort of book at all, but that was before I was unlawfully arrested, sectioned, held in seclusion and treated by force. Nowadays, chapters on patient autonomy and choice and how they are glibly brushed aside for mental health patients concern me deeply.

Sadly, lack of concentration scuppered my attempts to read the book – so it was back to Twitter.

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Related links:

• A Day in the Life
  • Home page
  • How to use the website, including finding posts to read and contributing
  • Writing guidelines – and, if this inspires you to give blogging a go yourself, here’s the blogging tool I use, WordPress
  • On twitter #ADayInTheLifeMH
  • Social Spider (the community interest company behind A Day in the Life and creators of One in Four magazine)
  • Public Health England (which provided support for the project)
  • A day in the life – Beatles
• Mainstream media
  • BBC news – People asked to blog about their mental health illness (with video) (1st November)
• Background
  • The New Mental Health website – A Day in the Life: A new project to snapshot day-to-day life with #mentalhealth difficulties #adayinthelifeMH – “Four days; the people of England who experience mental health difficulties; a snapshot never seen before” (14 October)
• Here‘s what happened to me on Friday 7th November (Storify of tweets)

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Forced medication: resistance is futile

Pacific Northwest Ballet principal dancer Carrie Imler, with corps de ballet dancers William Lin-Yee and Andrew Bartee in Jiri Kylian’s Sechs Tänze (Six Dances). Photo © Angela Sterling.

Someone found my blog today by searching “how to get out of the restraint that psychiatric wards use”. That lead to these tweets on my experience of forced medication on a psychiatric ward (set out below, slightly edited).

I discovered that nothing I did or said made any difference to the use of restraint on me: they were going to carry on and do it, no matter what. It made no difference to them what I said or did. All I could do was try to make a difference to me.

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Someone found my blog today by searching “how to get out of the restraint that psychiatric wards use”. Yeah, no chance there: it’s six to one. I discovered that nothing I did or said made any difference to the use of restraint on me: they were going to carry on and do it, no matter what.

In my experience of restraint, once there’s a tick on the chart saying “forced medication”, it’s going to be done to you, no matter what. Once there’s a tick in the box saying “forced medication”, it doesn’t matter where you are or what you’re doing, you’re getting it.

It made no difference that I’d never been asked whether I’d like pills or an injection. The forced med squad just turned up and did it to me. It made no difference that I’d never been asked which drug I’d prefer to take. They just climbed on top, pinned me down and stuck it in me. It made no difference that I’d never had a discussion about symptoms or potential diagnoses or treatments. They just carried out orders.

It made no difference that I was sitting on my bed, reading quietly, minding my own business. They’d turn up mob-handed & do their business. It made no difference that I’d stepped out of a meeting with the IMHA to get a letter from my bedroom she’d asked to see. They came in as I sat on the floor, document wallet in hand, surrounded by papers. They did it to me there, then walked off chatting, leaving me to wander back to the IMHA, disheveled and dazed.

It made no difference when I pleaded with them to explain what they were doing, what was in the syringe (or syringes – it varied), what effect it would have on me. None. It made no difference when I talked calmly to them, speaking to each by name, asking them to explain why they were injecting me. None. It made no difference when I repeatedly called out a friend’s name, calling to mind someone who cared for me, who heard my words. None.

It made no difference whether it was night or day. They could turn up any time, stick it in me, roll off, leave me lying in dirty sheets. It made no difference when (realising nurses wouldn’t speak to me) I wrote notes and handed them to the nurses. The notes asked the nurses to explain what drugs they were injecting, what the effects were, what they were for and what the plan was going forwards. No response. They just handed each note back to me later, unopened.

It even made no difference when I was first in the drugs queue so I could take the pills instead: they still came for me again. I had a double dose that day.

The staff weren’t monsters. Far from it. They’d chat away to each other, coordinating between themselves who was going to take which limb; who was doing what when; and then when to let go as one.

They’d chat away to each other as if the person beneath them was not a person who spoke their language but a wild and senseless beast. They’d leave behind a bed pushed out from the wall, sheets trampled under their boots, empty swab wrappers on the floor, lumps and bruises on my arms and legs. They’d leave behind a person who didn’t know what had just been done to them, or why, or when it would happen again, or how to make it stop.

I learned that, when they come for you, there is no escape. You are locked in and cornered. It is going to happen. It makes no difference what you say or do.

I learned that, when they come for you, there is no escape. You are locked in and cornered. It is going to happen. It makes no difference what you say or do. You can’t reason with people who won’t listen to you. You can’t persuade people who don’t hear you. You can’t resist them when it’s six to one, even if (unlike me) you knew how. You can’t reason with people who are just carrying out orders. You can’t persuade people who don’t think you’re worth asking.

It’s like being in a science fiction novel. Resistance is futile. Your life as it has been is over. Comply, cooperate and engage. Resistance just prolongs the process. The quickest way to get out is to comply, cooperate & engage.

I found that there was nothing I could say or do to stop them using restraint on me. But things I said and did helped me cling on to me. Little things I did and said as they did their business on me helped me to cling to my sense of being a person, a human being not an animal.

It made no difference to them what I said or did. All I could do was try to make a difference to me.

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Related links:

• Earlier blogs:
  • Treated like an animal – The first time I wrote about forced medication (March 2013)
  • Restraint – 10 ways it harms psychiatric patients – Comments on forced medication and physical restraint (June 2013)
• Code of Practice to the Mental Health Act – contains provisions about use of restraint of people who are violent or aggressive but rubber stamps its use for forced medication
• Good psychiatric practice – Code of Ethics of the Royal College of Psychiatrist (March 2014)
• My tweets on the topic earlier today – It made no difference to them what I said or did. All I could do was try to make a difference to me – and some responses from the lovely twitter people
• We are the Borg (Star Trek) (video – 50 secs)
• A year as a mental health advocate at South London and Maudsley NHS Foundation Trust (SLaM) – 27 minute video by Jake. He talks about what he saw working at SLaM as an IMHA, including the routine use of forced medication, threats and restraint of people who are not being violent or aggressive (and other topics) (see particulary the first 12 minutes).

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Trust, respect and coercion in mental health services

Trust, respect and coercion: Can people who use mental health services ever really trust staff when coercion is always an option?

Some thoughts of mine on the subject.

Some responses of the lovely twitter people.

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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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South London and Maudsley on film: humanity and humour

Looking at a newspaper story about the murder of drummer Lee Rigby earlier in the year, Lloyd, who has a diagnosis of paranoid schizophrenia, said that hearing about schizophrenics in the news made him feel worse. He worried that he didn’t know his own mind and wondered if he himself could turn into a murderer too, since that’s what he read in the papers. Dealing with the symptoms of psychosis can be difficult enough in itself. Having to deal with society’s perceptions that people with your diagnosis are violent and unpredictable adds another level of difficulty.

Earlier today, I attended an advance screening of Channel 4’s new series on the realities of modern mental health care at the South London and Maudsley (SLaM) mental health trust.  In the screening room in the basement of Channel 4′s headquarters in Horseferry Road, a select audience sat in red plush seats watching one of four programmes in the series on modern mental health care. The series is entitled Bedlam and the name choice has caused controversy. To an extent it can be argued that, when a respected NHS trust calls a television series after a medieval asylum, it dilutes the strength of the case against Thorpe Park’s “mental patient scary fun” horror maze Asylum. But what of the series itself?

The episode previewed profiled the work of Speedwell community mental health team (CMHT) in Deptford, south London, over the course of a year. The four-part series, which starts at 9pm this Thursday, also covers the Anxiety Disorders Residential Unit, Lambeth Triage (the front line for emergency cases) and the older adults unit (over 65s).

Without giving too much away, we followed patients Tamara, Lloyd and Rosemary, all of whom experience psychosis. We saw them trying to cope with periods of illness, voices, delusional beliefs about bed bugs and with children being taken into foster care.  We saw them using prescription drugs as well as speed and alcohol to help manage their troubling symptoms. We saw them at times chaotic and disturbed, and at other times funny and happy.

We saw social worker Jim Thurkle doing his best to hunt down and help patients, a third of whom refuse to engage with him. We saw Dr Tom Werner doing his best to confirm the stereotype of the psychiatrist in the bow tie. We saw the fine line between enabling someone to live the life they choose and intervening in the interests of their own health and safety.

Not once did we see someone who could be considered a danger to anyone else. Not once did any of the patients present as anywhere remotely near the stereotype of the paranoid schizophrenic mad axe murderer. What we saw was patients struggling to manage their lives in difficult circumstances, and the professionals who tried to help them.

It was particularly interesting to see the work of a CMHT  which, along with GPs, carry out the bulk of psychiatric care in this country. As the booklet handed out at the advance screening says:

“The lion’s share of SLaM’s work takes place in a community setting, looking after more than 35,000 people with mental health issues. SLaM treats 8,000 psychosis patients a year; 6,000 of whom are based and treated in the community. We touch on different treatments available and see intense and moving interaction with social workers and mental health teams.”

As Pete Beard, the producer of the episode, who answered questions after the screening, said:

“We wanted to reflect the realities of this challenging work, following the actual narratives of people walking a tightrope with their mental health as it happened and the teams who act as a safety net. I feel that these realities are rarely reflected accurately in the media and as a result it is important to demystify the work performed as community teams, especially taboo subjects such as being sectioned”.

It was profoundly moving to see someone taken away from their own home, against their will, and detained with no legal authority other than the personal opinions of a social worker and doctors. No police arrest, no court process, no judge, no jury. Just a simple form signed, and you have no choice about even the simplest things like what you eat, where you sleep or what shampoo you use to wash your hair. And, on a more intrusive level, you have no right to refuse medication.

This extended scene cannot help but make you reflect on the balance of power between the state and the individual, and on what society deems to be acceptable norms of behaviour. This is especially so when you’re dealing with someone you don’t really know, as can be the case when a mental health team is called out to consider sectioning someone. Britain has a proud tradition of eccentricity, but that is not tolerated if you are deemed to be mentally ill. Simply being a nuisance to others but in no way dangerous to yourself or others can, ultimately, mean three people decide on your behalf that your quality of life will be improved by a compulsory stay in a locked psychiatric ward.

The sectioning sequence made me think about the boundaries or free will and autonomy and to what extent people’s peculiarities are tolerated. I have been on the receiving end of such a process, and it changed my life irrevocably. As Dr Baggaley said, when he’s taken part in sectionings he does wonder whether this was what he trained for. Although he sees it as difficult, he does see it as necessary.

Dr Baggaley described the person in question as a “revolving door patient” who would face repeated hospitalisations, some under section (compulsion), for the rest of their life. And yet this is someone who will – under the current welfare benefits system – also face repeated Work Capability Assessments. It is hard to see the point of such assessments in this case particularly since, as Dr Sarah Wollaston MP wrote today, WCA’s are not geared towards helping people with mental health problems find and retain employment.

One of the things which struck me in this episode was the amount of humour. Despite their difficult circumstances and troubling symptoms, the patients followed could come across as affable, amenable and warm-hearted. Ripples of laughter would regularly rumble across the audience, and not just because viewers were looking for a little light relief in what was, after all, a serious topic. As with any other fly-on-the-wall documentary, the colourful charaters in this episode were full of humour. The seriousness of the subject matter made the flashes of levity even more welcome.

Overall, this preview episode was intimate, insightful and profound. It showed human beings in all our difficulties, complexities and ambiguities. It showed the realities of trying to combat the stigma around mental illness with humanity and humour. It showed that danger and fear are the least of the concerns of the CMHT.

On a final note, I will end with a criticism that was raised by audience members with personal experience of mental health services: namely that the episode was somewhat naive and unrealistic. Audience members had received far worse experiences of mental health care, or had been able to deliver a far worse service due to cutbacks. It was acknowledged by the film makers that Speedwell CMHT had a ring-fenced budget, so had not been under the same constraints and workload other CMHT’s they’d liaised with had.

It was also highlighted that a lot of the difficulties patients needed help with were practical, and that these needs were not being met. The patients were unable to deal with these matters themselves and therefore they were stuck in difficult circumstances. Examples were the bedbugs which did actually exist in Tamara’s flat. It was not a delusional belief (though its extent may have been) and dealing with that practical problem may have lessened her delusional symptoms. This and her use of amphetamines may also have been the way she managed the immense sorrow of losing her children. Lloyd appeared to be using alcohol to numb his pain.

With a series planned over two years and filmed over twelve months, much footage will have ended up on the cutting room floor. It’s a shame, however, that the close relationship between medical help and social support, and the parts played by talking therapies and thereapeutic activities, were overlooked completely in this preview episode.

Nor was the 9% reduction in inpatient beds in the past 2 years mentioned.  Nor were the terrible cuts to community mental health services mentioned.

On the other hand, as Madeliene Long, SLaM chair said:

“Despite it affecting so many people, mental illness is still poorly understood. The stigma and discrimination that people face can make their mental health even worse and can prevent them from seeking help. So it’s really important that we do everything we can to raise awareness, challenge stereotypes and promote the facts about mental health. I’m really pleased that we have been able to work with Channel 4 and The Garden Productions on such an ambitious project which sets out to do exactly that.”

As executive producer Amy Flanagan said,

“Many of these patients had lived long lives with no history of mental illness. It could happen to our parents, to us.”

And, if it does happen to us or someone we know, programmes such as these will mean it feels a little less alien and a little more a part of everyday life.

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Media coverage:

• Channel 4 – press release about Bedlam
  • Anxiety (Episode 1/4) – 9pm Thursday 31st October – “It’s a condition every one of us experiences from time to time, but imagine if one day you woke up and found your anxiety had spiralled completely out of control.”
  • Crisis (Episode 2/4) – 9pm Thursday 7th November – “At Lambeth Hospital in south London, the Trust has pioneered the use of short-stay emergency wards for patients in crisis. It’s effectively run like A&E but for those with mental illness.”
  • Psychosis (Episode 3/4) – 9pm Thursday 14th November – “In this episode we explore the world of the mentally ill who live in the community.”
  • Breakdown (Episode 4/4) – 9pm Thursday 21st November – “In the final episode of Bedlam, cameras gain access to a psychiatric ward for over 65s at the South London and Maudsley (SLaM).”

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South London & Maudsley NHS Trust:

• SLaM’s site on the TV series – Bedlam
• On twitter: @MaudsleyNHS
• Website: SLaM
• SLaM and C4 make groundbreaking documentary series on mental health (22nd August) (initial press release)
• Bedlam – Our new TV series (2nd October)
• Bedlam – The story behind the name of our C4 series ( 3rd October)
• Bedlam – Our new Channel 4 TV series SLaM e-news edition (14th October

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People involved:

• Dan Charlton – Head off communications & media at SLaM (twitter @Dan_Charlton1)
• Dr Tom Werner (twitter @TellDrTom) – psychiatrist & CBT therapist – website

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Blogosphere

• Can stigma be challenged by evoking stigmatising stereotypes? From the Maudsley to Bedlam (2nd October) – My initial blog, with links to lots of other matieral

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Related coverage:

• Guardian newspaper – People with mental illness need help to get back to work – but coercion is wrong (28th October) – By Dr Sarah Wollaston MP
• Guardian newspaper – Why mental health bed cuts make me ashamed to work for the NHS (October 2013) – By Dr Alex Langford (who also attended last night’s private screening)

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Adjust your medication

Damien Hirst – Pharmacy (1992)

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Oops! I appear to have hit the “publish” button rather than “save” and I don’t know how to reverse that. So anyway, I’m in the process of writing a blog post on this topic – Cameron’s “nuts” comment, Pickles’ “advice” to “adjust your medication”, comedy and the use of language around mental health problems. Which will appear at some point … once the ideas have percolated through! 

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• My Storify of tweets – Adjust your medication – conversation with writer and comedian Juliette Burton
• Standing up to bullies – an earlier blog post (September 2012) on being told, “I think you need to take some meds,  luv” by twitter inpatient psychiatric nurse (tweeting as @Fart_Pug)
• Using mental illness as an insult – Mick Philpott, Jon Snow & lunatics – an earlier blog post (April) – “There are so many expressive insults in the English language that there’s really no need to resort to using references to mental health as insults.”
• Laughing at mental illness – good news for Russell Howard – an earlier blog post (April) on getting cheap laughs by using damaging stereotypes to poke fun at a vulnerable group

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Mainstream media:

• BBC
  • BBC Radio 4 Today – interview with Juliette Burton (at 1:45 in/7:45am)
  • Online news – Eric Pickles’ abuse victim comment sparks row – “Eric Pickles has come under fire for telling an alleged abuse victim to “adjust your medication” when she accused him of failing to help her.” (Sunday 29th September)
  • BBC South East Today – Report by Simon Jones (at 5 mins) – (Monday 30th September)
• Gravesend Reporter newspaper – Eric Pickles tells survivor of Gravesend care home abuse to ‘adjust your medication’ (Monday 1st October)
• Metro newspaper – Eric Pickles tells alleged child abuse victim to ‘adjust your medication’ during heated exchange (Sunday 29th September)
• Independent newspaper – Eric Pickles tells survivor of alleged child abuse: ‘Adjust your medication’ – “Mental health campaigners aghast as minister recorded shouting at alleged child abuse survivor ‘adjust your medication’” (Saturday 28th September) – includes audio clip

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Additional links:

• Damien Hirst Pharmacy (1992)
• Eric Pickles‘s website – MP for Brentwood and Ongar and Secretary of State for Communities and Local Government (twitter @ericpickles)
• Teresa Cooper
  • No 2 Abuse – “Teresa Cooper’s No2abuse covers news and articles about Kendall House children’s home and the injustices to children and families” (twitter @no2abuse, @teresacooper)
  • Cooper’s video (sound only) of her altercation with Eric Pickles, which she posted on YouTube on 14th September

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Cashpoint

You know the first thing friends from the psychiatric ward ask when we bump into each other? “Have you been back in since?” We just want to stay out. Our ward wouldn’t pass the “friends & family test”: going back to that place is seen as the worst thing that could happen. “Hi! How you doing? Been back in? “No. You?” “No, thank goodness. What’ve you been up to?” “Doing what I need to do to stay out.” “Me too.”

Last night at a cashpoint, a tall young woman approached me. “Got any spare change? My benefits were stopped. I’ve got no food or electricity.” She looked into my eyes, from eye to eye, imploring. “I’ve got no money. My benefits were stopped.” Hang on … We looked again and recognised each other from the ward. Back then, she was so vulnerable, so easily led, so naive. Just a teenager. She’d been in for 18 months.

“Are you still with the community mental health team?” I asked? Last time I’d seen her, she’d been there with her mum, waiting in the waiting room for an appointment. “Yes,” she said. “Let’s make an appointment with the benefits adviser. She’s really good. She’ll help with your benefits. They’re stopping them for the least little thing at the moment. Maybe she can get you help with a loan or a grant or something.” She looked around. “How’s your mum? Is she okay?” “I don’t know. We had an argument. We don’t speak any more. Do you have any spare change?”

“What would you like me to buy you?” I asked her. The cashpoint was outside a supermarket. “I was just going into the shop. Come with me and choose something nice to eat.” She shifted from foot to foot, looked down, looked up into my eyes again. “I just need cash. I’ve got no electricity or food at home. Can you give me some cash?”

“Come back to my house then.” I lived just round the corner. “I’ll cook you dinner. What would you like?” “No thanks. I just want money. Have you got any spare change?” Her skin was bad. She’d cut her hair short. Her glow was gone. She kept looking around behind my head, shifting from foot to foot.

In hospital, she’d been beautiful, naive and full of enthusiasm. She wanted to be a doctor. Or a model. Or both. She had no street smarts or guile. Just an enormous smile.

As a girl, she’d had an argument with her bullying brother one night and had run away from home. She’d been placed in a hostel, a safe place for vulnerable young people to stay. In the hostel, she’d been sexually assaulted by another resident. The mutual friend she’d confided in hadn’t believed her. Had blamed her. She hadn’t told anyone else about the assault. She was young and naive and hadn’t known how to deal with it. She’d kept living at the hostel. With her attacker. Who’d come back for more.

She’d stopped eating when her food started talking to her; when she could see little mouths in the baked beans speaking to her. When she’d become so skinny people noticed, she’d told them about the little mouths in the baked beans. She hadn’t told them about the assaults. It takes time and trust to build up to telling someone something like that. And she hadn’t had that.

She’d been taken from the hostel to the psychiatric hospital. They’d given her drugs for the little mouths in the baked beans; for the food that was speaking to her. They’d kept giving her more drugs and more drugs till she’d told them the food wasn’t talking to her any more and had put on weight.

When I met her on ward, she’d been there for 18 months. She hadn’t had any talking therapy. Just drugs. She hadn’t had any help to prepare for life outside the ward. Just weekly group sessions with the occupational therapists where we painted our toenails or tasted smoothies. But at least she wasn’t skinny any more.

When I met her on ward, she was so sweet and helpless that everyone was protective and did stuff for her. I encouraged her to learn to do things for herself: she’d need that when she got out; or at least the confidence to believe she could learn to do things for herself.

One day, she asked me to put on false eyelashes for her. Instead, I taught her how to do it herself. It took the whole evening. But she did it. Next day, she came back & showed me she’d done it herself. They weren’t on quite straight, but she was so pleased and proud. I was too. False eyelashes rock. She looked fabulous on the outside, with her dramatic eye make-up; and she felt fabulous on the inside, with her sense of achievement.

Next day, she told me about the assaults. She told me about her life and how she’d ended up on ward. She told me she was due for discharge soon. She said she’d started to see the little mouths in the baked beans again.

I didn’t know what to do. My mind was blown by that place, by what they’d done to me there. It was too big for me to process. Hearing her disclosure scorched my brain as I listened. All I could think of to do was to tell her to tell the nurses.

She told the nurses about the little mouths in the baked beans. But not about the assaults. She still hadn’t talked about those. They increased the drugs dose to make the little mouths in the baked beans go away again. She was discharged shortly afterwards and placed in a shared flat with a stranger. After 18 months on ward. And still a teenager. She didn’t know how to wash her clothes, cook, or budget. She couldn’t even keep her room on ward tidy.

Looking at her last night, I wondered whether, all these years later, she’s had any help to process the sexual assaults. Any help with the voices. Any help with managing her life. I wondered if it mattered. Or if drugs were enough. I couldn’t tell how she was. I only knew that she was different. I only knew that I held both her hands and squeezed them as I looked into her eyes, and hugged her and hugged her, then saw her slowly walk away.

And, of course, we both knew – because it’s the first thing we ask when we meet a ward friend – that we hadn’t been back in since.

So tomorrow I’ll drop a note to CMHT asking them to check up on her. She’s too vulnerable to be begging at cashpoints. I don’t know what else to do for the best.

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EPILOGUE (January 2024)

One aspect I didn’t mention above is that we taped her disclosure.

 

She was so quiet and vulnerable and big-eyed and, after she’d disclosed to me what she’d been subjected to, I knew it was important but didn’t quite know how, so I got her to repeat her disclosure into my laptop microphone so it was recorded, so she could use it to support herself to be heard on ward, or perhaps for the police.

 

But afterwards, trying to work out how to save the file somewhere on my laptop or transfer it, I felt as if my brain was being scorched – I don’t know how else to describe it – as if my brain was having a flame-thrower passed over it. This has happened at other times when I literally have to put distance between myself and the “harmful thing” (whatever it is).

 

I just could not deal with it. With anything. So I erased the recording. And told her it hadn’t recorded. Just to make it stop.

 

And then I told her to go to the nurses & explain what was happening. And she went straight to the nurses. And all they did was bump up the meds.

 

I understand why I couldn’t do more – why I had to back away: I was being brutalised in that place by what the staff were doing to me, and some time later was diagnosed with post-traymatic stress disorder caused by their actions. It was a brutal place and I had been sectioned because my brain had collapsed and couldn’t cope with life any more. So I did what I could to try to get her help.

But I feel sad that the precious information she shared with me, her vulnerability, her sharing it with me for the first time, did not land on more fertile soil. I hope it helped her even so, but she needed and deserved so much more and I fear the system will have destroyed her by now but who knows. Perhaps she has flowered again.

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Links to related websites:

• My Storify story of tweets – Cashpoint
• A rather creepy video of talking food (1 min) used to promote TV show Family Supercooks, an initiative of the Food Standards Agency and the Good Food Channel
• Eleanor Longden: The voices in my head (14 mins) – her recent fascinating and inspiring TED talk

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