Archive | November, 2014

Do you remember your first time?

16 Nov
My bedspace after one incidence of forced treatment by six people.

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, Close quoteser. 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):

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On restraint, conflict and containment:

 

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

15 Nov

How are you cartoon

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.Beatles A Day in the Life yellow

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.Close quotes

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

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