The lonely life of the outlaw

***TRIGGER WARNING*** Suicidal thoughts/plans

Please take care of yourself and don’t read on if you are feeling at all vulnerable

In the six years I was a frontline probation worker I spoke with all kinds of people about all manner of crimes. Some were one-offs, people “of previous good character” as the Courts like to put it, often helped along by alcohol. Some people’s offending was made up of many smaller crimes that they hoped would never be discovered, repeated petty frauds, habitual minor shoplifting or other theft. The financial gain might have been small, but perpetrators often had much to lose; I will never forget the dinner lady who stole repeatedly from the school safe to fund her online gambling, nor the trainee barrister who lost all hope of practicing law once convicted of fiddling timesheets at the office where she temped.

Towards the end of my frontline career I worked with a different kind of offender entirely. I was the specialist Probation Officer for a group of mostly men (40 individuals, of whom just one was a woman) identified as causing a disproportionate amount of local “acquisitive crime” – thefts from cars, street robberies and, above all, burglaries – committed to find their use of heroin and crack cocaine. Unlike the dinner lady and the trainee barrister, these were people who had very little to lose. Most had a history of what would once have been called “delinquency”, a pattern of teenage behaviour including low-level crime, dabbling in drugs and the kind of disruption and absenteeism which saw them excluded from the school system without qualifications. Their family relationships were tenuous; many had been in care, and it was not unknown for them to have been introduced to Class A drugs by their own parents. Printed out, their criminal records ran to many pages. With little hope of a legitimate job and no secure accommodation these clients frequently went on benders, committing burglaries or robberies daily, simply to fund the next day’s drug use. When the police finally caught up with them it was my job to coordinate with a drugs worker, a housing worker and specialist police officers to try and get them into treatment, into housing and under stricter supervision.

I usually met them after their latest arrest in a glass-walled interview room in Wormwood Scrubs. My job was to tease out of them exactly what had happened this time, where and how things had unravelled until they’d reached a point of what felt like no return. Sometimes these men would describe “going off the rails” to such an extent that they no longer felt in control of the situation and were in some way relieved to have eventually been arrested, to have been stopped in their tracks before they could do more harm to more victims. In more than one case a client actually phoned a police officer from my team and asked to be arrested. If they were going to give up and be cuffed, they’d rather it was by someone they trusted and knew.

This former caseload of mine has been much in my mind of late. As my suicidal plans grow and develop, becoming more defined as I have undertaken detailed research, I feel more and more that I am the one now off the rails. I feel, as my clients sometimes seemed to, that I am only partially responsible for my actions because my bipolar bender has taken on a life of its own and I no longer know if I can stop it. A few weeks ago when first in crisis, I wanted to be stopped. I gave up, voluntarily, information that would allow someone to step in and stop me. I didn’t much care if that was a relative or a professional. I didn’t care if I had to be admitted. I wanted to be the one to be told, “This is where it ends. Enough. Come in, before it gets worse.”

The difference now is I don’t know that I want to stopped. I feel that the “seductive suicidal voice” has the upper hand, just as my clients sometimes felt their addictions did. Certainly my suicidality, like an addiction, is making me self-centred, horribly concerned with my own needs and my own needs only. Certainly it is causing me to do things that do or might hurt people I love. The suicidal inner monologue is constantly running, while at the same time I continue to do ‘normal” things that “normal” people do – discuss Christmas plans, choose a new kitchen appliance, worry about a relative’s health, plan work several months away. It’s not that I am feigning interest. Part of me really is invested in the future, but part of me… isn’t. Maintaining this duality is very tiring. Most probably it’ll soon get to a point where I hold my hands up, confess everything I’ve been doing, buying, thinking and reading, acknowledge that I am very ill, but I’m not there yet.

My biggest protective factor at the moment is my appointment at the National Mood Disorders Service, which is now just four days away. It would be beyond ridiculous to wait seven months and end up in hospital and unable to attend. So I’m struggling through each day, telling my inner monologue that no, it doesn’t have to be now, it doesn’t have to be today, nor tomorrow. I know that I need to cease doing the things that make it more likely I’ll put my plans into action. And I know the best way to do that would to be tell somebody the truth, Tom, or the nurses at Home Treatment Team, or maybe the junior doctor.

But I’m not there yet. I’m not ready to give up and give in, to ask somebody to stop me. I’m being referred back to the Senior Psychologist attached to the HTT. Maybe he can help me make some sense of it all, of my twisted motivations and conflicting desires. In the interim I daren’t even tweet my thoughts any more, for fear some over-zealous “helper” will try to involve the emergency services. I feel like more and more like an outlaw, far out on a limb, someone whose thoughts or deeds set them apart from normal, decent people. And that’s such a lonely place to be.

Posted in Mental health, Suicide | Tagged , , , , , , , , | 4 Comments

Hypomanic hangover

One of the unexpected benefits of being on antipsychotics is that I’ve not had a hangover since 2011. Being that bizarre hybrid creature “an extravert with a degree of social anxiety”, in the past I often used to find myself drinking more than I meant to at parties or on nights our as an attempt to allay my nerves. I can’t do this now; anything more than a couple of units of alcohol begins to mix with the quetiapine in a very unpleasant way which has put me off having more than one drink in any given evening.

After those occasions when I’d have one, and then another one, and then another, I’d go to sleep fairly easily but at some point in the early hours I would jolt awake, palms sweating and pulse racing, feeling like Uma Thurman in that scene in Pulp Fiction when she’s given an adrenaline shot to the heart. From that point, I would be consumed by a sense of doom. Things I had done or said that at the time had seemed witty, interesting, or fun now looked like the behaviour of an embarrassing “mature” woman who should know better. A sense of sick horror about the way I had conducted myself mingled with the inevitable nausea, pounding head and craving for bacon, and it would often take a day or more to stop beating myself up about my drunken behaviour. And every time I was in the grip of a hangover I would make fervent promises to myself that I would never put myself through this again. (You can guess how that went.)

Today I am suffering from a different kind of hangover. I am consumed with the same kinds of guilt and shame, a sense of horror at how I’ve behaved, and a bunch of recriminations and promises to do better next time. Only it’s not drunken behaviour I’m regretting – it’s the things I have said and done while I’ve been hypomanic.

I was hypo for most of last week and at first it was very pleasant. Recent dread about Christmas (is it just me, or have the Christmas adverts kicked in even earlier this year?) had seen me crying to the Home Treatment Team nurses about how I couldn’t even cope with the idea, but now this miraculously lifted. Suddenly I was ALL ABOUT CHRISTMAS. In November! I knew intellectually that the big day was some weeks away but I felt very driven from within to shop for it, and to shop for it now. I scoured charity shops in two towns looking for suitable fabrics for some Christmas craft ideas and searched Pinterest for inspiration. That wasn’t going to be enough, though; I had a strong sense that I must also shop for ready-made decorations because my Christmas tree must have a whole new look this year. Before I knew it, I had spent at least £75 on baubles and ribbon and the like. While I was in shopping mode I also bought a new-to-me sparkly charity shop dress for the Mind Media Awards (of which more later).

Most of the time this shopping was lovely. I felt a huge sense of reward every time I found a decoration or a bit of fabric that was exactly what I wanted. Everyone that dealt with me was pleasant and congenial. I found myself popping into places for a straightforward purchase and lingering for ten or fifteen minutes, chatting to staff. I was tremendously satisfied with all my purchases, right down to the bag for life that protected my new glass baubles.

Whilst in this buzzy mood I had been thinking a lot about the Mind Media Awards. Although I ended up enjoying my first Awards I had found arriving at the very noisy and crowded foyer of British Film Institute quite overwhelming and had almost run away. This got me thinking about people who might be coming for the first time and/or on their own and how to make arrival easier than I had found it. I was also keen to connect with a number of online friends and perhaps meet them beforehand so I didn’t have to walk in by myself. And so I took it upon myself to try to organise something. This, dear reader, is the story of my hypomanic life. If there is something to be volunteered for, I will stick my hand up. If I see a gap, I will undertake to fill it. If someone is struggling, I will want to rescue them. And so I tried to make myself a kind of focal point for people on Twitter to connect in real life, inviting various people I knew were likely to be there to join me for a light meal immediately before the Awards.

There had been a slight irritable edge to this hypo all along, but as the week wore on that unpleasant aspect become more and more prominent. I snapped at poor Tom after he’d had a crappy day yet still managed to get the supermarket to fetch dinner, provoking a needless row. In one charity shop the volunteers refused to see me an item for £1 despite me having picked it particularly because it was on the one pound rail. What started out as a calm assertion that consumer law said they were obliged to sell at the advertised price quickly escalated into me haranguing them about their need for training, the pathetic nature of their understanding of consumer law, and a threat to report them to Trading Standards whilst telling everyone in the borough never to shop there. Overkill, much?

The following day I found myself unable to ignore one of the frequent email “invitations” I get offering me the amazing opportunity to blog about someone’s non-mental health product to boost their business for free. I was particularly irked by the writer’s purported love of my blog given the fact he’d got the name wrong. I knew it was pointless but I felt compelled to send a scathing response asking him to leave me alone. This resulted in two further emails from him and a eventual blistering response on my part involving lots of profanity and a warning that if he persisted in contacting me again when he had already been specifically asked not to, I would begin a file on his harassment of me. Just after I hit send on my final email I held the door open for my downstairs neighbor, who was talking on her mobile and dragging her little dog along. She didn’t acknowledge me, and I found myself calling snottily after her, “THANK YOU. That’s what it’s customary to say when someone HOLDS THE DOOR OPEN FOR YOU!”

As soon as I got in I realised how overwhelmed and overstimulated I was, and that being hypo really wasn’t fun anymore. Feeling physically exhausted I went to bed quite early but struggled to fall asleep as brightly coloured, constantly-changing pictures kept forming in my visual cortex, a kind of exhausting manic kaleidoscope. I didn’t feel I could take much more.

As it happened, I didn’t have to worry about taking more. Over the weekend my mood crashed, as it so often does after a hypo. And with the crash comes the inevitable hypomanic hangover. Why did I behave the way I did? What was I thinking, spending so much money on something so frivolous and unnecessary? What did I hope to gain by behaving in such a sneering, vindictive, self-righteous way? It certainly didn’t give me any pleasure. Why did I buy craft materials I would now feel guilty about my inability to use? Why did I make myself unofficial organiser of the Mind Awards tweetup? As soon as I got up this morning, I know I couldn’t go and be among all those people. I loathed myself for suggesting the idea, picking a venue and publicising it and giving people my mobile number. What was I thinking?

In about half an hour the Mind Media Awards will be getting started. I’m sitting on the sofa in my pyjamas and a huge cardigan. My special outfit has been shoved to the back of the wardrobe and my hair’s unwashed. Tom’s out so it’s just me, my ready meal for one, and the shame and guilt and remorse and self-hatred of another hypomanic hangover.

Posted in Mental health | Tagged , , , , , , | 6 Comments

A matter of opinion: are all views on mental health equally valid?

A couple of weeks ago I took Guardian journalist Hannah Jane Parkinson for the headline, “Samaritans Radar is a crude tool for flagging suicide risks – but it will save lives”. I baulked at the word “will” in the face of the app’s newness and its hugely problematic nature, and asked where her was evidence for this statement. Parkinson tweeted back that she didn’t need evidence, because it was an “opinion piece”. I understood that, but Parkinson wasn’t sharing her opinion; in using the word “will” she was making an assertion (as distinction she didn’t seem to be able to make).

Opinion: a view held about a particular issue; a judgement formed or a conclusion reached; a belief; a religious or political conviction

Assertion: The action of declaring or positively stating; declaration, affirmation, averment (source: Oxford English Dictionary)

If you’re asserting something, I continued, you need to be able to back that up. A few other people jumped in on the evidence issue, but Parkinson wasn’t for turning. In her view, her opinion (or “assertion” as the pesky old OED would have it) simply didn’t need evidence. Because everyone’s entitled to one of those and should be allowed to publicly air it.

Right?

Yesterday I learned that in the opinion of someone called Turhan Canli, “Major depressive disorder (MDD) should be re-conceptualized as an infectious disease” perhaps caused by “parasitic, bacterial, or viral infection”. It’s a startlingly left-field statement, not least because Canli is an Associate Professor of Psychology and Radiology (with sidelines in Humanities, Compassionate Care, and Bioethics) and not a specialist in psychiatry or, um, parasitology, bacteriology or virology. What evidence could he have for such an attention-grabbing headline?

Clicking through to the full article, his conjecture rests on little evidence. First there’s his point that depressed people exhibit “illness behavour” like low energy. Well, prescription drugs can reduce energy, as can other chemical issues like low blood sugar, or factors like insomnia, all without the involvement of pathogens. He also says that people with MDD display “inflammatory biomarkers”. This is based on two meta-analyses (a compilation of the findings of a number of studies). The first merely notes: “depression is accompanied by activation of the IRS” (inflammatory response system)” – there’s no speculation as to the nature of the association, so for all we know it’s the depression that causes a rise in these markers. The meta-analysis found levels of a different marker “were significantly higher in MDD patients than controls” but notes that “age, samples source and ethnic origins may play a potential role in heterogeneity”. In other words, the findings could be explained by something unrelated to the depression.

Next, Canli points out parasites, bacteria and viruses can alter people’s emotional behaviour. This is true. But so can drinking alcohol, listening to music, getting into an argument, becoming a parent or watching the John Lewis Christmas advert. They’re not form of infection (with the possible exception of the John Lewis Christmas advert). Lastly, Canli looks at possible inheritance of this depression infection. Maybe, “parasites could also add exogenous sequences to the human genome through the process of horizontal gene transfer” or perhaps we should look at the “estimated thousand species of bacteria reside in the human gastrointestinal tract” which could be passed during childbirth or through children living with their parents.

Wait, what? How am I supposed to have passed the depressive infection to my son, again? Is it in my genes, or did I give my child depression in second stage labour, as a woman with Strep B (group B streptococcus) might? Why didn’t I infect my daughter, then? So, big surprise, no real evidence for Canli’s theory (or set of theories) – but plenty of unwarranted inference and wild leaps of the imagination. Opinion as assertion, giving credence by publication in a journal.

This week the Maudsley Hospital held one of its regular debates on a mental health topic. On this occasion the issue up for a mauling was “Whatever happened to the stiff upper lip?” Batting for Team Psychiatry was Simeon Wessely, President of the Royal College of Psychiatrists. Captaining the Celebrity Pillshamers was novelist Will Self. Yep, that’s right. A novelist. Whilst I generally dislike debates, I do understand that for some there is a certain pleasure to be taken in putting forth an outrageous position purely the purpose of generating passionate argument. But a novelist? Really? Against the President of the RCP? What is his opinion on psychiatric prescribing worth, and why should it be worth any more than anyone who has taken psychiatric meds?

It seems there is a current trend to be so obsessed with the concept of “balance” that personal opinion opposing the prevailing view is often treated with as much dignity and weight as that founded on evidence. Programmes like Newsnight and Question Time pit politicians and experts in their field against people with no real credentials other than holding a strong opposing opinion on the evidenced stance. This has the effect of implying that all contributions matter equally, and that all opinions are similarly valid, whether you have spent decades studying the issue or are known simply for being “outspoken” on a topic.

Does this matter? Not in every topic of debate, perhaps. But when the topic are those that affect the lives of millions of people with mental health conditions, setting up assertion as opinion or treating spurious assertions as just as valid as an informed positions then yes, I think it matters. It especially matters if, like the examples above, the deliberation is about the issues affecting services users, without their involvement.

It matters if the ridiculous notion that depression is an infection is treated seriously, because it reinforces the unlikely notion that mental health conditions have purely biological roots and gives false hope that we will one day find a “vaccine”. It matters if someone is allowed to assert that that Samaritans Radar will save lives, because it steamrollers over huge level of concern within the mental health community that it will do no such thing without providing any evidence to the contrary, again potentially generating false hope as well as providing a skewed picture to those new to the topic.

It really matters if we say that, just for fun, we’re going to allow the opinion of a novelist to be pitted against the most senior psychiatrists in the land, because it reinforces the idea that in mental health, anyone’s opinion goes. Giving credence to the idea that meds are A Bad Thing may be a bit of entertainment for those who see medicine as intellectual exercise, but it feeds into and reinforces the uniformed opinions of those who thing pill-taking does more harm than good. And that harms real people, people who have to live with family, friends or colleagues who are mistrustful of drugs, who think we are weak for taking them or that we’re being turned into zombies with no authentic emotion. Besides which, debating the effects of psychotropic meds without the input of those who take them seems to be missing the entire point, something like judging Masterchef without asking the view of the people who tasted the food.

In my informed opinion.

Posted in Mental health, mental health debate, Mental health services, Pillshaming | Tagged , , , , , , , , | 11 Comments

The long and winding road

Back in the spring a number of people started to suggest I might benefit from referral to a tertiary service. It would be wrong to assume that everyone knows what that means, so for those who need it, scroll down to the NHS bit. At first I was dubious; I just didn’t think I was ill enough to warrant being seen by a team of national specialists in affective disorders, and it seemed somehow disloyal to my consultant Dr X and all his efforts to stabilise me. But then my first spell with the Home Treatment Team brought me to bit of an impasse. HTT consultant Dr H did not agree with Dr X as to what should be done with me and he suggested that what he called “this lack of consensus” be addressed by a referral National Affective Disorders Service. This was in the first week in April. Over the following weeks I worked with a junior doctor on a timeline of my bipolar episodes and Dr HTT put together a referral letter, which he ran by me before faxing it over to the National Service at the end of April.

I finally received the appointment yesterday.

Seven months have elapsed since the decision to refer, and even now I would be nowhere near having an actual appointment were it not for Tom’s tenacity and the fact that I’m under Home Treatment. Ellie, one of my favourite nurses, looked into the holdup and found that although the tertiary service had approached my CCG for the funding they had since denied having any record of the referral. Meanwhile their email to the CCG had been sitting unacknowledged in somebody’s in-box since August. Tom spent a fair bit of the time he’d taken off to look after me phoning round to try and iron out the problems. The person at the CCG responsible for the decision to fund the appointment never seemed to be there; the National Service stuck to their story that they had no paperwork. Eventually Tom persuaded a somewhat reluctant GP Practice Manager to fax the referral paperwork over to the National Service again, and after the threat of formal complaint the CCG suddenly signed off on payment.

I keep asking myself how this is acceptable, and what would happen to a patient that didn’t have a qualified mental health professional at home who was so good on the phone. It was tiring even listening to Tom having to constantly reiterate that it was not our problem if paperwork had been lost, not our problem if no one at the CCG had read the email, not our problem if the person we needed was never available, and that action was needed now because I was suicidal.

The whole process has been exhausting. Since I last posted my mood has swung back and forth from hypomania to mild depression, never for more than a few days at a time (right now I’m somewhat high). I think the chasing then finally receiving the appointment has contributed to this instability. At one stage, getting the appointment itself was in the forefront of my mind. Now that’s here, my thoughts have naturally turned to what the outcome of the assessment might be, and I’m nervous. I can’t imagine that someone could turn up with my recent history – two major crises within 6 months despite being on high doses of the same two drugs I’ve taken for several years – without them suggesting a radically different treatment plan. And the thought of a big med change is scary, a voyage into the unknown.

I’ve been through lots of medication change in the past and not all of it has been pretty. Changing from one antidepressant from another has sometimes caused “mood switching” from depression to hypomania or, more dangerously, suicidal mixed mood. I was in bed for a week weathering the physical withdrawal – no, drug companies, not “discontinuation symptoms”, I worked with Class A drug users for years and I know withdrawal when I see it, thanks – from venlafaxine. An attempt to swap me from quetiapine to sodium valproate gave me an ultra-rare, 1:100,000 reaction of incessant psychedelic hallucinations and plunged me into crisis. And this most recent crisis occurred after just a 50mg drop in my quetiapine dose.

I don’t have much work on during December, and that’s probably best with so much uncertainty ahead. I’ve primed the HTT (Dr H and I seem to be getting much better this time around), explaining I don’t feel confident about handling a major change even with weekly appointments with Dr X, that at the very least I feel I would need daily appointments if not admission. They seem OK with that. While I wait I have been trying to co-ordinate my physical healthcare, ensuring I have paper copies of the outcome of the ECG and bloods I’ve had done at the hospital and a print out from the 24 hour blood pressure cuff I’ve just had done through my GP surgery. I have waited so long, and I don’t want there to be any hold ups because of physical issues. I also have a sheaf of seven questionnaires to complete and bring with me to the appointment.

This road has been such a long one, and I can just about see the end of it – but what lies beyond remains a source of anxiety.

The NHS bit

NHS services are divided into three levels. Primary care is delivered in the community and is usually thought of in terms of GPs but actually includes a wide range of healthcare professionals including practice and district nurses, community midwives and health visitors, healthcare assistants, and so on. In recent years, IAPT (Improving Access to Psychological Therapies) has attempted to provide greater specialist mental heath provision within the primary sector.

Conditions too serious or specialist to be dealt with in primary care are referred onward to secondary care. This sector includes acute Hospital Trusts who provide emergency care such as A&E, acute care (for example the wards on a general hospital) and hospital maternity care. Anyone who needs to be referred to Consultant or other specialist requires secondary care.

In terms of mental health care, secondary care means the Mental Health Trusts who provide what often used to be called Community Mental Health Teams (CMHTs), now often rebranded as Assessment/Recovery or Complex Needs Teams and more specialist community teams like Early Intervention in Psychosis (EIP) or Child and Adolescent Mental Health Services (CAMHS). Secondary care also includes day hospitals; community therapy such as that provided by clinical psychologists, occupational therapists or arts therapists; crisis services such as out of hours and Crisis Resolution or Home Treatment Teams; and inpatient beds.

Tertiary care is the most specialist level of NHS care and provides regional or national services for people whose condition is rare, intractable, especially complex or in some other way requires highly skilled input. For example some cancers are very uncommon, and are best dealt with by a specific expert at a regional centre, even if this means the patient has to travel further than if they were seen locally.

If someone is a healthcare professional (or in my case, the close relative of one) they are often offered the opportunity to be seen at a different Trust to protect their confidentiality. This is dealt with through a courtesy called a reciprocal agreement that Trusts will see another Trust’s employee on the assumption that if one of their staff needs care they can in turn refer them to the first Trust

So I live in Area A, but I’m seen in Area B under the reciprocal arrangement – the tertiary service is in Area C but has had to go back to the CCG for Area A for payment for their services.

Clinical Commissioning Groups (CCGs), composed mostly of GPs, hold the purse strings. They decide what services are needed locally and pay for them. If someone needs treatment outside of what is already provided by primary and secondary care, any tertiary referral needs to be agreed by the CCG if treatment is to go ahead.

Posted in Family issues, Mental health, NHS services, Politics and current affairs | Tagged , , , , , , , , , , , , , , | 2 Comments

The seductive whisper of the suicidal voice

***TRIGGER WARNING: suicidal thoughts, suicide planning suicide attempt, overdose, physical affects of treatment of overdose***

In September 2001, in the middle of a bipolar mixed episode, an idea came to me. I’d barely slept in a week despite prescribed zopiclone, and my mind had been running super fast. There was a lot for it to go over: the manic, multiple affairs I’d been having online; the lack of attention I had given my children and my husband Andy; my near abandonment of my training as a midwife; and the very recent horror of watching people jump from the burning Twin Towers.

But then came an idea. It was uttered in a calm, quiet, clear manner that was in stark contrast to my physical agitation. I knew it must be coming from a part of my own brain, but it didn’t feel like part of me. It felt like listening to a voice. I’m not saying it was literally a voice. I wasn’t having auditory hallucinations, nor do I mean I was experiencing a deluded sense of “implanted thoughts”. I mean that a section of my psyche I hadn’t even known existed had stepped forward, finger to lips to hush my whirling mind, and grabbed my attention.

>This

it said,

>is what we are going to do.

>We are going to pick up that packet of zopi and put it into your dressing gown pocket.

>Then we are going to go downstairs and pour a big glass of juice and take it through to the bathroom.

>As we run the bath, we are going to get everything there is out of the bathroom cabinet – the painkillers, the antidepressants, the odds and ends of benzos, the leftovers of short courses of crisis antipsychotics, and add the zopiclone.

> Then we are going to swallow them all.

There it was. The answer to everything. The way to make the rest of my mind shut the fuck up, hopefully forever. The way to avoid having to deal with the fallout from my recent manic behaviour. The way to stop being me, once and for all.

>What you need to realise

continued the voice

> is that we are going to have to be very sneaky here.

> Andy is downstairs watching TV. He is between you and the kitchen, you and the bathroom.

> We are going to have to be very, very careful not to arouse suspicion.

The voice seemed to speak such sense that falling in with its plan was a massive relief. Suddenly everything seemed lighter, clearer, easier. I propelled myself along the landing and down the stairs. It felt like gllding, or floating; I had no sense of my body. I got the juice. I went into the bathroom and I did what I had been told.

At the time, I didn’t the question the voice at all. I knew I was crossing a line, going into territory I’d never traversed before, but the voice was so seductive that it was hard to resist and I found that I was after all prepared to take that step. In the days and weeks to come, when the scratches in my throat had healed (inflicted by using my fingers to try and bring up more and more charcoal and pills to assuage the nausa) when the bruises had healed from the cannulae and artierial blood gas punctures, when I was allowed back home, I could only think of how inept my attempt had been. Why did I listen to the voice? What was the point of taking an overdose with Andy in the house? It could never have worked, never have done the job.

I didn’t hear the voice for many years after that. Even during my depressions over the past few years the voice has remained absent. Yet in my crisis earlier this year and especially in this current crisis, it’s been back. Over past weeks I’ve been battling against its soft seduction, trying to push against the way it seems to talk such sense, offer such clarity. Fearing its powers of persuasion, I surrendered my all medication along with my bank and credit cards to my partner Tom. Because I knew I couldn’t trust the voice. Which I knew meant I couldn’t trust myself.

Last week Tom decided it was safe to give me my bank card back, just for a few minutes, just so I could go buy fish and chips. I assured him it would be fine – hadn’t I been upfront all along, sharing my suicidal thinking with Tom and the Home Treatment Team, confessing my plans? I went to the cash machine in our street and withdrew £20. At the fish and chip shop I found a queue snaking out into the street so I abandoned the idea and walked instead towards the mini Tesco, passing the cash machine again. I should have simply walked past, but I stopped. No one else was using the ATM, it was there, waiting, as if just for me. My debit card was clutched tightly in my hand, just the way the blister pack of zopiclone had once been.

> You know we can take out another £280, right? Our daily limit?

I knew.

> You know that if we want to buy the extra drugs for the main plan, if we want to disappear into an anonymous hotel room to carry it out, that’s going to be the minimum you’re going to need?

> We don’t want anybody tracking credit card purchases.

> There might not be another chance. Tom never needs to know. We just need to be a little bit sneaky now. Just go upstairs with a pizza or something and hand your card back. You can hide the cash in the wardrobe.

I stood in front of the cash machine, alone in the dark street, for ten minutes. I found myself lunging forward to insert my card, then pulling my hand back, again and again. So far I had been mostly truthful with Tom, but this would be an outright breach of the trust we’d placed in each other – that he would protect me from harm, but that I would be honest in order to enable him to do that. I felt pushed, propelled, by the voice and its oh-so-sensible thinking but in the end I went upstairs with nothing more than a margherita and some garlic bread.

The next few nights the voice got busy while I was in bed. Tom was already asleep when it started in.

> OK, so we don’t have your bank cards, but we still have your Freedom Pass, right? So we can travel any time, yes.

> How’s about we look up the timetable for the fast trains passing our station and make an estimate as to when they come through?

I called up the National Rail app, and obeyed.

> Good. Then we can get up, put your winter coat and boots on – no sense in being cold – open the front door very quietly, and go down to the station.

> Not to do anything tonight, no, no that. Just to check our guesstimate. Just so we know that if we want to, we can.

After that, I gave Tom my Freedom Pass and keys at night.

Today I have just been left alone in my home for about an hour for the first time in two weeks. It’s supposed to be some level of recognition of the fact that I’m doing better. And indeed I am not so desperately, horrendously low, not thinking all the time that I need to get out of here, need to die. But the voice isn’t finished with me yet. The voice is in the business of keeping escape routes open, and while there’s even a tiny likelihood I may want such a thing, it will keep on at me.

When Tom went out, the voice came in.

> Those meds are somewhere in the house. A good 5-6 weeks’ worth of lithium and additional diazepam. Not to mention paracetamol and co-codamol.

I dithered, knowing Tom would be back pretty soon. The voice began to wheedle.

> Just find them; we don’t have to take them now, of course.

> We can wait until everyone thinks you’re better and do it then.

> Back to the original plan, right? Just act trustworthy. Be a good girl and play the long game.

> We need to get your bank card back, get that money out. We can buy some additional OTC meds in the meantime. Continue researching hotels while we’re waiting.

> Then we can take everything you need to the hotel in your wheelie suitcase as soon as Tom’s gone back to work.

I am ashamed to say I heeded the voice. I’d been trusted to be on my own for the first time in a fortnight, and I went looking for the drugs. With every cupboard door I opened, I got that sick feeling of crossing the line. I didn’t find them; in the end despite the whispers of the voice I didn’t search as assiduously as I could have done, so clearly part of me doesn’t want what the voice part of me wants. But Tom goes back to work this coming week, and I’m going to be alone then. Alone, but not alone. Alone with the voice.

Posted in Mental health | Tagged , , , , , , , , , , | 20 Comments

Complaint to the Samaritans re: Radar app

FAO Chief Executive, The Samaritans.

Re: Radar app.

I wish to complain about the disastrous implementation of the Samaritans Radar app this week. The nature of my complaint is threefold.

Firstly, you launched a risky and invasive app upon an unsuspecting Twitter mental health community without warning. You say you consulted with potential users in development and tested the app extensively, yet you clearly did not consult the thousands of Twitter members who regularly tweet about mental health issues. I am a vocal and longstanding member of that community yet neither I nor anyone else I follow had heard of the app until its launch.

Had you consulted with your target audience, you would have quickly learned why the Radar is both flawed and risky. It operates on the assumption that people in connection with one another on Twitter are “friends”. This may be somewhat more true of Facebook, where for example I have around 200 “friends” almost all of whom I know in some capacity in real life. It most certainly is not true of Twitter, where I have approaching 8000 followers. How on earth could I have a relationship with anything but a fraction of this number? Some followers are interested in my work in mental health, some presumably follow for more personal reasons but it is impossible for me to know since I cannot interact with the majority.

I do however know that there is a minority who follow me because they dislike me and want to keep an eye on what I am doing – this is a pitfall of being so very public about my mental health. Yet even with a currently locked account, unless I explicitly opt out, you offered via Radar assistance to anyone at all among the 8000 to monitor my distress levels covertly. This means your later advice to make accounts private is hardly any help unless you have so few followers you know them all personally. It is also frankly insulting; it’s pretty much like telling people that if they don’t want strangers peering through their window they should keep their blinds shut 24/7.

As someone with bipolar disorder I am frequently suicidal, and often talk about it on Twitter. It’s a place I can express myself without worrying that I will upset relatives, where I can say the unsayable because other people understand. How on earth do you think it helps me to feel potentially spied upon during those conversations? How on earth do you think it helps me to give my trolls a heads up that I am vulnerable, so that they can relish attacking me when I am down? How on earth does it help anyone when talking about suicide in a theoretical, policy or academic sense, as many mental health activists do, rings “false positive” alarm bells?

Please don’t tell me that I am wrong about any of this; I may be 40 years old but have used the internet for mental heath support longer than your target “digital natives” have been alive and have used social media far longer than my children and stepchildren, who are in their teens and twenties. In addition I speak at conferences about act as a consultant on the use of social media for online mental health peer support networks.

My second concern is that this should have been perpetrated against the mental health community by an organisation that community trusted. Why did people (and this includes me, as a sometime user of your services) trust you? Because we knew that unlike our dealings with the NHS, you were never monitoring/assessing our risk and passing that risk information to a third party. You were just there for us. And so you launch an app that monitors us and passes the information to a third party? This feels like a sick joke, a perversion of the trusted relationship The Samaritans has built up with the mental health community over decades.

My final point concerns your organisation’s handling of the Twitter mental health community’s overwhelmingly negative response to Radar. I appreciate your digital comms team must have been overwhelmed with tweets – I was certainly deluged by people telling me how distressed they were, how frightened they were, how Orwellian the whole thing seemed. I had to watch distressed friends go into a complete panic as they feared Twitter, often their one authentic space to talk about issues like suicidal ideation, was no longer safe. I saw people leave Twitter, immediately, possibly never to return. I saw people close down fruitful, supportive accounts and create brand new locked ones, beginning a laborious process of trying to recreate their safe space all over again where Radar could not get at them. I saw people say that they could now never speak openly on Twitter about their suicidal thoughts again. I saw victims of abuse and stalking terrified that their abusers would sign up to monitor them and exploit their vulnerability.

Your comms team must have seen that distress. They must, surely, have read at least some of the numerous blogs which popped up exploring the ethical, legal and emotional ramifications of Radar. One prominent member of the community, who is also a mental health professional, went so far as to tweet you her fears that we were witnessing “the death of the Twitter mental health community”. And as an organisation you must have accepted some of our points, because you responded with the opt-out so-called “whitelist” (although you took 15 hours to respond to this request in my case). This was a big step forward, but will of course do no good at all to Twitter members who have not heard about Radar and so do not know they could be monitored, or who do not know how to opt-out.

But what has been conspicuously absent from your cut-and-paste Twitter and email responses? One important word: sorry. You, a large, respected and established mental health charity, have this week caused huge distress, fear and anger among the very people you purport to want to help. The great irony is that had you launched Radar as an opt-IN service, many of the people who were so deeply troubled by its current form would have welcomed nominating selected friends to keep an eye on them. Instead, you used us as experimental subjects for your tech, crowed about its “reach” after a day your subjects had found traumatic, and have expressed no regret to the damage you caused. We in the mental health community have learned to expect this kind of shabby treatment from the organisation like Asda or Thorpe Park, who care very little about the effect of their actions on us. To receive it from an organisation that exists supposedly to support us? Heartbreaking.

I look forward to your comments, and most specifically your apology, which I will be more than happy to share via Twitter and my blog.

Yours sincerely,

Charlotte Walker

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Mr Sam and his magical radar booth

Suppose you find a cafe where lots of people with mental health problems hang out. Some of them go off into private nooks, but the majority sit round tables. They’re out in the open area with their cappuccinos and chai lattes, so technically anyone could overhear if they chose, but to all intents and purposes they are having frank, semi-private chats. One of the things they talk about openly, for mutual support, is their experience of suicidal feelings. Thoughts of suicide are common in the general population but disclosure can often be met with shock or inappropriate action like an unnecessary 999 call, so people like the cafe’s feeling of safety and freedom. Part of its charm is being a space away from family, colleagues and everyday friends who often wouldn’t understand.

Then one day a Mr Sam turns up. Mr Sam is a bit of an expert on suicide; he’s spent his life training others to give comfort and support to the suicidal via phone, text and email. Only Mr Sam, he’s not comfortable with the cafe. He’s anxious that people might be talking to each other about suicide while their nearest and dearest who don’t frequent the cafe much, and the nice doctors and nurses who just want to help, might never know.

Troubled by this, he sets up a booth at the cafe door offering a brand new service. Anyone approaching the booth can point out people they have an interest in. Mr Sam will then put a tiny microphone on the Subject, and if they start talking openly about suicide Mr Sam will gather the data and phone it through to the Interested Party. Obviously as it’s an open cafe the Interested Party could just hang around in the cafe or pop in from time to time, or even ask the Subject how they’re doing, but Mr Sam wants to make it easier for vulnerable people to be watched. For their own good.

Having set up his booth, Mr Sam gets up on a box and addresses the cafe, explaining the virtues of his scheme and letting everyone know that he has also notified the media of his wonderful new idea.

Mr Sam then finds himself deluged with questions.

Q Will Mr Sam tell the Subject he’s putting a mic on them?
A Nope, he’ll do it in secret, because it’s for their own good.

Q Will Mr Sam tell the Subject they are apparently a matter of concern to any Interested Party?
A No, because it’s for their own good.

Q Will Mr Sam notify the Subject that he’s collecting and phoning through data about them?
A No.

Q Will Mr Sam ask the Interested Party what business they have listening in to the Subject?
A No.

Q So they could be someone who wishes the Subject harm and enjoys knowing they’re in crisis? A bully or an internet troll?
A Yes.

Q So they could be a nosy family member that the Subject is really not keen on talking to about their mental health?
A Yes.

Q So they could be a stalker or abusive partner who could exploit the Subject’s suicidality to frighten them more or insinuate themselves back into their lives?
A Yes.

Q So they could be a journalist?
A Yes.

Mr Sam sets up his magical booth on Wednesday. All day people approach him outlining their discomfort, unhappiness and downright fear of his helpful scheme. People quickly produce pamphlets about how Orwellian Mr Sam’s idea seems, how unsafe they feel, how the scheme may even be illegal.

By Thursday, the café’s already a little quieter. Some mental health folk have gone into private rooms and locked the doors. Some have gone home to mull over whether they can ever feel safe in the cafe again; some have already left for good. Some are still sipping their coffee but are subdued, quiet, avoiding talking about their true feelings because they don’t know who might be listening.

In the interim, Mr Sam’s made a video explaining what a great idea his booth is and how pleased he is with its “reach”. And I’m left wondering if the cafe can ever be safe and vibrant again.

Posted in Activism, Mental health, Stigma and discrimination | Tagged , , , | 22 Comments