Ten things not to say to a suicidal person

In July 2011 I wrote a post entitled, “Ten things not to say to a depressed person.” It was the first piece on this blog to attract a large audience and I own much of my blogging success to that post and its companion piece, “Ten supportive things I’m glad somebody said to me.”

I’ve decided the time is right for a similar piece on dealing with suicidal people (although I’m definitely not expecting the same number of readers for this post!). Suicidal thoughts have been a problem for me since around Christmas and the wide variety of responses I’ve received to my blogs and tweets, along with training to be a Mental Health Instructor, have given me cause to think about how people respond to individuals they know to be suicidal. A common response is feeling that they must throw some logic at the problem. What people don’t realise is that not only does suicidality work to a logic of its own, many attempts to reason the person out of their thoughts aren’t actually as logical as the would-be helper thinks. Another view is that the suicidal person needs a jolt, a shock to the system. Still others offer platitudes and “positive thinking”. All of these approaches have flaws, and here’s my guide to why.

1)   But you have so much to live for! Well, but you see that’s your judgment, not mine. Each of us gets to decide whether we have quality of life, because no one can ever really walk in our shoes and experience our unique suffering. History is littered with amazingly talented but mentally unwell people, from Virginia Woolf to Vincent van Gogh, who took their own lives despite phenomenal achievements. Think that’s because they lived in the days before psychiatry and medication? Think again. Only last year official National Treasure and President of Mind Stephen Fry disclosed that despite being an incredibly successful writer and broadcaster, he had recently attempted to take his own life. Where you see success, I may see an unending bleakness. Where you see reason, I see a person who won’t acknowledge my pain. And if you won’t acknowledge my pain, how can you be on my side?

2)   You are so young, you have your whole life ahead of you. Let’s unpick the logic of this one. Suppose you were in acute physical pain. Suppose you’d been in this pain since adolescence, maybe even childhood. Suppose you’d been told there was no cure for your pain, that medicines provided respite for some but might or might not work for you – there was no way of telling. If someone pointed out that you were only twenty-five, would you think, “Goody! I might have another sixty years of this!”? Of course not. You’d most likely be scared by the prospect of living on in pain, a pain you were already struggling to cope with. Pointing out how many decades of suffering could expect would hardly improve your attitude to your situation.

3)   I hope you’re not planning on doing anything stupid. I unfollowed someone on Twitter just recently for saying this to me. If you feel trapped and desperate and believe nobody can offer you a solution, wanting to remove yourself from the equation actually feels fairly sensible. Sure, some suicides are impulsive (especially if alcohol is involved) but actually it’s often something people have often thought long and hard about. Many take all the steps they can to minimise the impact on their loved ones, putting financial and practical affairs in order before they do the deed. When you tell me my careful plan is “something stupid”, you’re dismissing its importance – a fast track to alienating me. In fact, it makes me feel like you think I must be stupid. If you’re worried, say so, but don’t dismiss it as stupidity. What’s wrong with saying, “I’ve seen/heard you mention suicide, and I’m concerned about you. Are you safe? Is there anything I can do to help?”

4)   Suicide is a permanent solution to a temporary problem. This perennial internet favourite is, like many positive thinking soundbites, both trite and inaccurate. Yes, some people have single episodes of mental illnesses and go on make a full recovery. And yes, for those with more severe and enduring illnesses there will probably be periods when we are relatively well and we do want to live. But bipolar disorder is not a temporary problem. Schizophrenia and schizoaffective disorder are not temporary problems. Borderline personality is not a temporary problem. There are, as yet, no cures and for many of us, the fluctuation is part of the problem. It’s hard to stay motivated, to stick with medication regimens and self-management plans, to work on applying our learning from therapy (should we be lucky enough to be offered it) knowing that on one unidentified day in the future, we are going to relapse. Maybe it won’t be such a bad episode; maybe it will be horrendous and we’ll end up in hospital. We have no way of knowing, and little control over our situations. So excuse me if, 29 years into my condition, my problems don’t seem that temporary.

5)   Think of the damage you would do to your nearest and dearest. You know what? I do very little but. Suicidal people are well aware that if they carry out their plans, somebody’s going to get hurt. For many that could be a spouse, parents or children. It might be friends who would miss them terribly. Professionals can be devastated to lose a client to suicide. There is no way to make a clean, painless break. Knowing this makes us feel awful, selfish, a terrible, terrible person. And what does feeling like a terrible, terrible person do to someone who already acutely depressed? It makes them feel still worse. Getting them to dwell on the harm they might cause is counterproductive. You think you’re giving them a wake up call? You might actually be increasing the risk they carry out their plan.

6)   You need to stop dwelling on your problems. Leaving aside how all consuming it feels to be suicidal, severe and enduring illnesses are genuinely life-threatening. Each year about 5550 people in the UK die by suicide and worldwide this figure is around one million (World Health Organisation). A 2013 study found that people with my condition, bipolar disorder, were 20-30 times more likely to die by suicide than the general population. This is massive and ignoring it isn’t going to go away. I’m sorry if it makes you uncomfortable but the severity of my condition is a fact. Suppose I had cancer? Suppose I had a heart condition? Would worrying about that be considered navel-gazing? Would a friend find a preoccupation with a physical illness morbid or boring? If you’re worried I have too narrow focus help me find other things to think about, but be constructive, not critical. Take me out, Write me an email. Send me a card. Lend me a book. Give me a gym pass.

7)   You’re just looking for attention. Yes. Yes, I am. And my question to you is: since when has it inappropriate or unacceptable for someone in acute pain to want/need attention? If I were in physical pain you’d urge me to pay attention to the signals I was receiving; why should emotional pain be different? Sometimes I want attention because I’m scared. I’m scared that I might carry out my plans, I’m scared of the intensity of the pain, and I’m scared that nobody will understand me. I crave reassurance and the kind of attention that might help me stop feeling so awful. Often that’s going to look like NHS intervention but when professionals ask me, “What would be helpful here, Charlotte?” I often have no idea, then I get scared they’ll withdraw their help. So yes, I want supportive attention that says, I am here. I am here for you and I’m not going away. But not….

8)   I’m calling 999! There will be situations when it’s appropriate to call 999. If someone is on a bridge, perhaps, or holding a knife to their wrist, or if their feelings are part of psychosis and they are very unwell and disconnected from reality, maybe it’s time to call the emergency services. Mental Health First Aid training makes it very clear you should never try to intervene physically in a high–risk situation. But in general when someone discloses suicidal thoughts, use the first rule of the Hitchhiker’s Guide to the Galaxy: DON’T PANIC! Panic gives the message that the disclosure is just too awful to accept, right when I’m feeling dreadful in the first place. That creates distance between us, which isn’t helpul. I’m not expecting you to be inauthentic. It’s OK to share that you are shocked or concerned to hear I am thinking of killing myself, but I can do without shrieking, swearing or giving me the message that I’m a freak.

9)   You won’t do it – nobody who talks about it ever does. This is one of the biggest falsehoods in mental health. Again I’m not really sure where it comes from, only that it’s been around a long time. Very many people who take their own lives have mentioned it to someone, even if indirectly (“I sometimes think everyone would better off without me” or apparently tangentially (“I should really put my affairs in order”) so the Samaritans list it as one their myths on suicide. It’s also possible that someone very distressed might just take this statement as a challenge:You don’t believe my pain is real? Well, then I’ll show you!”

10)   You’ll feel differently next week. Oh, you have a crystal ball! Well, I have experience. My depressions have often lasted months, every day feeling like torture. Being asked to hang on for a week has felt totally impossible. In any event, in the case of bipolar “feeling differently” is often part of the problem. Yes, I might feel differently next week, but differently doesn’t usually mean I will be experiencing normal mood. I could be hypomanic. I could be paranoid. I could, worst case scenario, be in a mixed mood state, which is the same as saying suicidal only I’ll be agitated rather than sleepy and slowed down. And what if I do feel the same next week? And the week after and the week after that? Are you going to give up me? What I want is for you to be realistic. That’s not the same as giving up hope. That’s not the same as giving me the message I’m never going to get better. I just want some acknowledgement that we don’t know when I’m going to be well, that this is a horrible situation to be in, and that not knowing is part of my pain.

 

So there we are. Another facet of bipolar, another ten things I wish I didn’t have to hear. I could’ve written more than ten this time, but round numbers work better. I hope others will add their own suggestions – and perhaps more crucially, what they do like people to say when in a suicidal crisis.

 

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The Adjustment Bureau model of psychiatry? No thanks

Lately this blog feels more like a diary than anything else. This is partly because I’m not doing much work or activism (although I guess meeting with the Secretary of State for Health and 11 other people with lived experience to help him better understand the issues in community mental health care was pretty damn important). I feel like my focus has narrowed, that all I have the capacity to think or tweet or talk about is my own mental health and what’s happening with regards to services. I feel like a different blogger to the person who won a Mind Media Award for the mixture of campaigning and personal writing. I just hope that those who like my more analytic posts will hang on in there with me until I get through this.

To pick up where I left off last time, I was completely baffled by the change in treatment decision under the Home Treatment Team. At Tom’s suggestion I requested to see my notes from the point I’d been handed over by Dr X. This proved a little harder that we imagined. The first nurse we asked, on Sunday, shook her head when Tom said he was sure we could ask to see my notes informally. No, we would have to fill in a form. The following day I phoned and spoke another nurse, who I’ll call Ellie, and said I had checked Trust policy and was entitled to see up to 40 days’ worth of notes without completing a form.

“Where are you getting this from?” Ellie asked, sounding slightly flustered.

“Um, from your Trust website? Under the ‘patients’ tab. I’m reading it to you verbatim.”

Ellie said she would see what she could do, but the next day when Tom and I saw another nurse, Darren, the notes still weren’t ready. It had been accepted I was entitled to informal access, but they “had to be checked for third party information.”

“What third parties?” I asked Darren. “You know there are no other organisations involved in my care. No one else apart from my GP and Tom even knows I’m cared for by this Trust.”

There was no answer beyond reiteration of the concern about non-existent third parties, so once again I left without my notes.

On Wednesday I got a call from a Ellie to say that my notes were ready and that after I had seen Bob, the senior psychologist, I could pick them up. Bob and I got off to a confusing start. The encounter had been described to me as “an assessment” and presented as something I had to undergo if I wanted to be considered for a third bipolar medication. Only that wasn’t how Bob understood the situation. He saw himself as a supportive intervention. His entire job, he explained, is to see people in difficult circumstances, on the wards or under the HTT. He had no intention of assessing whether I needed ongoing therapy; he wanted to help me deal with the crisis I was in. The session was useful in that it helped me consider the questions, “Why this crisis? Why now?” and validated my desire to explore the content of my paranoia ideas more fully, even if there isn’t going to be any longer term therapy for that. I’m meeting him again on Monday, to see how I am doing and see whether there are any other issues we can briefly look at together.

Afterwards I asked to see Ellie, who passed me my notes in an A4 envelope. “You know, I’m worried,” I told her, “and I expressed this to Bob, that I’m beginning to be seen as a ‘difficult patient’. That’s a bit scary.”

Ellie shook her head. “Oh, no, you’re not difficult. But it’s challenging for us to have such a well-informed patient. Like when you knew more about Trust policy than I did, that’s not the way it should be.” I didn’t know what to say to this. If knowing something that was on the Trust’s website felt challenging to the nursing staff, I felt my concern that I would end being re-labelled – probably with something like Borderline Personality Disorder – on account of my assertiveness felt very valid.

“Well, good,” I said. “Because I don’t want to come out of this with any new labels.”

“Oh, no, please don’t worry. That’s absolutely not going to happen. We’ll see you on Thursday when you see Dr H again.”

I didn’t open the envelope on the bus or even when I got home. I thought it might be upsetting to see myself reflected through others’ eyes, so I waited until Tom got home and asked him to have the first read. The first printed contact was from Dr X and confirmed our expectations for treatment under the HTT: that they would start me on a third bipolar medication and monitor me carefully as well as providing emotional support. The slippage in the plan was documented in the nursing contacts but the really important entry was a scanned version of Dr H’s handwritten notes from our meeting. Utterly contrary to Ellie’s assurances that I would not be getting any new labels, there in Dr H’s own handwriting was the conclusion that I was not suffering from rapid cycling bipolar at all, but from “adjustment disorder.” No wonder I couldn’t make sense of what was happening; things were being tinkered with, changed, erased and rewritten without my knowledge or consent.

Neither Tom nor I with our combined mental health knowledge had even heard of this condition, so I looked it up. It made no sense at all. Adjustment disorder is a condition which is usually identified soon after a major life change and is diagnosed through emotional lability and instability. Yes, I had mentioned my dad had had a stroke and that I had been worried about him – but that had been in September and I was now really pleased with the way he had adapted. Yes, I had mentioned anxiety about my son’s lack of application at school and the possible consequences of this, but the issue had been ongoing for months. Since September I had experienced paranoid delusions and debilitating depression, but these had been accepted as part and parcel of my bipolar. It seemed that Dr H did not accept that I was experiencing even short-lived, minor hypomanias (something Dr X had not questioned). Why? Because he had already decided he liked the idea of adjustment disorder, and hypos, even tiny ones, don’t fit within AD’s cluster of purely negative symptoms. He had recorded the fact that I said I was disinhibited at times; that I felt elated at times; that my partner who had worked in mental health for many years had seen me move from depressed to hypo and specifically noted it. These factors had then been deliberately ignored and a new label had been selected but I had not even been told, let alone asked to contribute. The reason for the change of plan was now abundantly clear. I was asking for a bipolar solution, but Dr H did not believe I had a bipolar problem.

For the next 24 hours I was very angry. I felt very strongly that I should just discharge myself from HTT entirely and go back to consultant-led care. Tom urged me to be more measured. What did I want from the situation? I still needed help. If I discharged myself I would lose the nursing and psychological support from the team. This was true; but I had to weigh it up again the fact that I did not know that I could now bring myself to work further with Dr H. At my next appointment I saw Darren again, this time accompanied by SHO, James, now released from night duties. I expressed my concern at the way things were going, and requested to have a nurse in with me when I saw Dr H again.

“Why do you want a nurse with you, Charlotte?”

“Because I feel that you guys are on my side, Darren, and I don’t feel that about the medical staff.”

James looked at me reproachfully. “I’m on your side, Charlotte!” Really? On first meeting? How very presumptuous.

When Thursday rolled around no nurse accompanied me, but Tom did. We had a pre-arranged signal: if I seemed to be getting rude rather than assertive, sarcastic rather than honest, Tom would put his hand on my arm (although I did tell him I couldn’t guarantee to shut up). I took control of the session as soon as Dr H and James walked into the room. I said that I was going to set the agenda. I told Dr H that I was utterly shocked that he would make a change in diagnosis and not only not collaborate with me in this, but not even tell me. The consequence was that I had a new label I didn’t agree with at all. Would he have ever told me? Would I have known at all had I not insisted on seeing my notes? The nurses certainly weren’t going to tell me. How did this fit with Trust values of respect, partnership working and transparency? Perhaps, I said, I had been spoiled by being under Dr X’s care for so long. But this certainly wasn’t the kind of care I would accept and it made me very hard to have any trust in him as a clinician. I also described my meeting with Bob, and his assertion that what I was undergoing was treatment, not assessment, reiterating that best practice guidance cautioned against multiple assessment anyway. I was extremely assertive, but I didn’t feel a hand on my arm so I kept going.

Dr H seemed surprised, perhaps even a little shocked, by my manner (while James remained utterly silent). I certainly got the impression that he was unused to patients setting the agenda and demanding to be treated as a partner in their own care. When he did speak, I felt there was a change in attitude. Something had shifted. He had several possible suggestions for going forward which he wanted to run by me (!). Maybe, he said, he could speak to Dr X again, and if he was available perhaps we could have a three way meeting. Or of course I could discharge myself from the HTT, but he thought (quite rightly) that I might not want to lose the support of the nursing staff. The other option, given “the lack of consensus” between Dr X, Dr HTT and me, would be to consult some sort of a regional specialist in mood disorders. I could carry on making use of the nursing support while thinking this over, but if I wanted to go down this route it would helpful to have a timeline of this episode and previous episodes, so he was minded to set James the task of trawling through my records and then as Tom and I to flesh this out with our experiences and memories.

So I appear to have had some impact on Dr H and something new appears to be on the table. I still have time to think but I am almost certain that a specialist opinion is the way to go. I feel tremendous loyalty to Dr X and I’m incredibly grateful for all his support and care, but we’ve been working on this problem for three years now and in many ways I am worse than I was 12 months ago. It may not be as easy as all that, however. I am already a complicated case in terms of funding, seen across Trust borders because of Tom’s job. Some negotiation may be required even to obtain an assessment. But I hope it can happen. I think it’s time my moods were looked at with a fresh pair of eyes. But I simply won’t stand for having a back room “Adjustment Bureau” for a care team.

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Dude, where’s my cast?

[TW: Suicidal thoughts]

It’s very hard to explain what’s been happening in my care since I last posted, so try and bear with me. I have made a lot of visits to Home Treatment Team nurses, all of who have been kind and supportive. With every visit, however, the plan as I understood it – that my own consultant, Dr X, had recommended a particular medication to address the rapid cycling and had handed me over to HTT for the implementation and close monitoring of that specific change to my medication regimen – has appeared to melt further and further away.

First I was told I would need blood work done. Fair enough; no sense in commencing a third med without making sure that the drugs I am already on aren’t damaging my organs or messing with my metabolism. First I was told the results would be ready tomorrow. But then they weren’t. Once they were, the doctor was on nights and wasn’t around to interpret the results. Then the decision would have to be reviewed by, Dr H, the HTT Consultant, who only sees patients on a Thursday morning. Thursday?? An entire week after referral (and med recommendation) by Dr X? Yes, Thursday.

I had high hopes for Thursday’s meeting. Surely now I would get started on my new med? I had visited the nursing staff four times since referral and stressed on every visit how desperate I was. I shared some details of my suicide plans. I expressed how exhausting and disconcerting the rapid cycling was. Time and again the nurses had seemed sympathetic. We believe you. We can see you’re in crisis and you need help. It sounds awful. What can we do to help you stay safe? And time and again I had responded: I really need to start that third med.

In the meeting with Dr H was a Dr M, a registrar. I was expecting a brief chat, given that a summary of my situation and a drug recommendation from a senior clinician who had worked closely with me for almost three years were on the table. So I was taken aback when I before I knew it I seemed to be being assessed all over again. This concerned me; I was just coming out of a hypo and felt that I was on my way down, which was not the same as being euthymic, which was how Dr H interpreted my mood. In fact, he seemed inclined to believe that I wasn’t having mild hypos at all and that I might in my depressed mindset be mistaking days of normal mood for hypos. I pointed out that my partner, himself a mental health professional, had witnessed rapid changes from depression to hypomania and been amazed at the size and rapidity of the shift. In terms of treatment, we discussed what had been useful in the past, including therapy, and we discussed what stressors might be contributing to my instability. We also spoke about medication, a discussion of the relative merits of carbamazepine and lamotrigine. Finally, meds were being discussed as if they were about to be prescribed and I breathed a sigh of relief. Dr L explained that he would now meet with the whole Home Treatment Team to review the care plan from here.

Imagine my surprise, gentle reader, when the following day a nurse was tasked with informing that at the team meeting it had been decided not to start me on a third med. Before that would even be considered, Dr H wanted me to have an assessment (yes, another one), this time with the senior psychologist. I should be assured that it wouldn’t take very long – some time in the next week. Not that she could say when, of course. Wait a minute, I said to the nurse. Wait just a minute, there appear to have been major decisions taken about me, without me. That is not OK. Furthermore this is yet another change in the plan. Did she not understand that if you give a suicidal person a plan, especially if they are experiencing something as disconcerting as rapid cycling, that any plan needs to be safe, steady and concrete? If you let that plan become nebulous there is no longer anything for the person to cling onto. There were only so many times, I sobbed, that I could be sent home to get through yet another 24 hours on benzos without any confidence that the plan was being taken forward.

Yesterday Tom came with me to see a different nurse. We explained exactly why we had such a problem with what was happening: that we had understood from the moment I agreed to work with the HTT that I was being handed over with a medical suggestion that would be implemented by HTT staff. We expressed out unhappiness and wanted medical input. The upshot was that today we went to the hospital again to see my lead nurse and the SHO, Dr S (now released from working nights). We couldn’t see Dr M, because he had left, something nobody had had the courtesy to warn me of when I allowed him to participate in my care.

Once again explained that what was happening was not the plan as we had understood it. I told them that I have really welcomed the emotional support of the nurses, but feel that the plan has been diluted since the start and went out of the window after seeing Dr H. I expressed my unhappiness with a) decisions being made without my collaboration and b) the requirement for me to jump through a further hoop in terms of a psychology assessment, which appeared to us to have come completely out of left field. I stressed that I could see merit in having a psychology assessment – working with a psychologist might help me become more resilient and deal with stressors better, and I’d actually been wanting the chance to work through my delusions and what they meant. But therapy takes a long time to start helping someone to feel better, and it’s not good practice to throw someone into therapy when they are in crisis.

What neither Tom nor I could understand was why I hadn’t been started on a third med as per my consultant’s recommendation so that I could get some way to being stabilised before therapy came into the mix. And neither of us could understand why I was being put through repeated assessments when there was already a solid assessment from a senior clinician who has known me for years, and that new decisions were being made without my input. That was not the model of psychiatry I expected to be a party to in 2014. The last time my consultant’s decision was overturned by a stranger after 25 minutes’ contact was when I was seen by Atos and is extremely disappointing to see this model practiced by my Trust.

I will see the senior psychologist tomorrow. I will participate actively in the assessment. But as I said to the nurse and SHO today, trying to sort out longer term interventions whilst acknowledging daily that I am actively suicidal and having to survive on benzos is like agreeing I have a nasty broken leg (“Yes, Charlotte, we know you have a compound fracture. We can see the bits of bone”) but refusing to stabilise the break before speaking with the physio. No doubt someone with a serious fracture will want the physio further down the line. But in terms of immediate emergency care, there is a real risk that things will worsen without rapid intervention. Which is exactly how I feel now. Dude, where’s my cast?

 

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Step by step and day by day: enter the Home Treatment Team

[TRIGGER WARNING: SUICIDE]

I’m not really sure what this post is. An update? An explanation? Perhaps it’s more of an exploration of what is happening to me right now.

Regular readers of my posts and tweets can hardly fail to have noticed that I’ve been struggling. Ever since Christmas I’ve been trying to pretend that I’m not in crisis, forcing myself to complete training, engage in activism or turn in pieces of work, as proof that nothing was really wrong. In terms of care I’ve been relying, as usual, on roughly monthly appointments with my consultant psychiatrist. A couple of months ago I was in such distress that he tweaked my antipsychotics up to the maximum recommended in a community setting. For a little while the dose increase seemed to help, or else my mood was boosted because my distress was being taken seriously. Either way, the improvement didn’t last.

The weekend of 15th and 16th of March I wept and wept. I confessed to my partner Tom that for the first time in years I did not think I could keep myself safe. I was rapid cycling, which is highly unusual for me, and the drops in mood were both sudden and severe. (This remains ongoing. This time yesterday Tom came in from work and noticed I was very quiet. My mood was low and I’d cried a lot in the day. During the evening I felt a shift, then pulses of genuine elation. By bedtime I was energetic, chatty and really wanted to stay up and talk. There was no reason for this change that either of us could discern.)

Back to that very difficult weekend, when thoughts of my own death and how I might achieve it were becoming very intrusive. Suicide planning had reached the level where I had reconnaissance missions in mind to ensure that I could die exactly when, where and how I chose. I was also aware of starting to think through practical arrangements for after my death. I did think of seeking crisis help but I wanted to see my consultant with all his knowledge of my history, rather than some unknown doctor on the emergency duty rota, only my next appointment wasn’t for a couple of weeks. I wrote Tom a list of ways he could help me at home until we could sort something out. The items ranged from the mundane to the critical and reflect my inability at that point to manage quite small things.

1)   Phone Dr X’s secretary and see if he is available to see me earlier

2)   Hide my meds so I can’t overdose

3)   Change the bedclothes because the duvet cover is beyond me

4)   Take away my bank cards so I can’t run away

5)   Buy ready meals so I don’t have to worry about what to make for dinner

6)   Book me a massage

On Monday Tom tried to find out Dr X’s availability but the admin staff didn’t seem to know and did not call us back as promised, so I emailed Dr X direct. He explained that he had limited time for clinical work due to other responsibilities but could offer me an appointment on Thursday, an arrangement that caused me to weep with gratitude. Tom came too and sat beside me as I described the rapid cycling, the depths of depressions and the brevity of the mild hypomanias. I told Dr X that I had no idea how to manage my condition any more. My self-management plan was based on mood states of weeks or months, not days or hours. I dared not try to correct the hypos in case I spiraled downwards, while very little in my armory of self-help techniques impacted on the lows. I had tried and tried, but I couldn’t do it any more. My life had become untenable. Something had to give.

“What do you think would help?” asked Dr X. “Or are you too confused to be able to say right now?”

We’d discussed a third medication at a previous appointment, but none of us had wanted to go down that road until we had exhausted the dose range of the meds I was already on. Now I thought it was time for another drug and Dr X agreed, although he wanted to discuss my needs with the lead pharmacist first. “And Charlotte, have you thought any more about the Home Treatment Team?”

I looked at Tom. We both had reservations. I’d heard many people’s experience of HTTs (aka Crisis Resolution Teams), and not much of it was very inspiring. Many people seem to have been offered pretty vacuous “advice” along the lines of, “Have you thought about having a bath? That would be relaxing!” or “How about making a cup of tea?” It’s amazing how often these suggestions come up, regardless of where in the country the service user lives. (It is also noticeable that staff rarely seem to investigate whether the person in crisis has fantasies about drowning. or has self-harmed by burning or scalding, before making these suggestions.)

Tom’s concerns were a little different. He knew from his professional life that HTTs can be quite large, making the chances of seeing the same person slim. He thought that might frustrate or upset me, especially if staff hadn’t read my notes before seeing me. There was also the question of geography. I can’t be seen in my home area because of Tom’s work, so I’m seen several boroughs away. This was fine when I only had Dr X or the team psychologist to see. But the distances were too great for home visits to be practicable, so the Home Treatment Team wouldn’t be able to see me at, well, home. I would have to come to the hospital instead.

I decided I didn’t care. I didn’t care if they might be rubbish. I didn’t care that I would have to go back and forth on public transport. Anything that might break the cycle had to be worth a try. Dr X said he would make arrangements and phone me that afternoon. He was as good as his word. By the end of the working day I had confirmation I would be taken on by the HTT, had spoken to one of its nurses to agree an appointment and blood tests, and had a recommendation for a new drug (carbamazepine) which Dr X was going suggest to the HTT consultant.

So far, the help of the HTT has been invaluable. Most clinicians have taken the trouble to read my notes before seeing me so I don’t have to explain myself all over again. I’ve been able to share the things I’m scared of, and have received emotional support. One of my fears was that I didn’t really need/deserve the team, that they would wonder why on earth I’d been referred to them. They have gently disabused me of this notion. I’ve been able to disclose some the things I have been doing to get my suicide plans in order and they have listened, without judgment, and asked how they could help to keep me safe.  No one has told me not to be selfish or to think of my children. They have sat and listened and been kind while I have cried and reminded me that bipolar is not fault. I have shared my worries that I might go into a mixed mood state or develop delusions again. “Don’t worry too much about going too high,” said my lead nurse. “We’ll keep our eye on that for you. We’re more concerned about getting you out of these horrible lows, so anything you can do to bring your mood up a bit, do it.” It feels like they have my back.

I’m attending appointments at the unit roughly every other day, although I’ll be attending both tomorrow (26th March) and Thursday. Thursday appears to be case conference day, when I will get to meet to HTT consultant and see what he thinks of my blood results and Dr X’s med suggestion. The team are on duty 7 days a week from 8am to 10pm, and unless I’m going really high the quetiapine knocks me out between those hours anyway, so I’m unlikely to need the out of hours advice line.

Right now, of course, I feel great. How tempting it would be to tell the HTT that I don’t need them any more! It would almost be embarrassing to turn up in this jolly state. Of course they know about my rapid cycling, that it’s a big part of the reason I was referred to them. They won’t let me make any over-optimistic decisions in the grip of hypomania, even if I do feel a fraud. But then who knows how I’ll feel tomorrow? Right now it’s all about holding on, day by day, until I can try the new med; then it will be all about theHTT monitoring me as I adjust to that. Step by step. Day by day.

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Trying to believe

 

I have to believe
That life has meaning
Somehow
That I am useful here
Sometimes
That I make small differences
Somewhere

I have to believe
That I need to stay here
For some time
That all this teaches me 
Something

Excerpt from Ann Thorp’s Belief (set to music as the litany from Howard Goodall’s Eternal Light: a requiem)

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A mental health fairy tale

The following is, sadly, a work of fiction. It’s based on the kind of excellent physical rehabilitation care I have seen elderly friends experience, where the focus is on as swift as possible a return to wellness. It also draws on care models such as midwife-led birthing centres, which again plan for a return to the community as quickly as possible after the acute event that is childbirth. It’s the model of care I need, now, and one that I doubt exists. Welcome to the Hope Centre.

 

I’m here because I don’t feel I can keep myself safe anymore. I’m here because I need a holiday from my life, a respite from being my own carer. I don’t want things to get to the level where something irrevocable happens. I need an intervention that’s going to get my life back on track before I get to the stage of coerced treatment, before I make an attempt on my life.

And so I’m referred to the Hope Centre. It’s smaller than the inpatient psychiatric unit and my consultant has explained that it’s focused on rehabilitation. A discharge target date is set for each person on admission and no one stays longer than a week. During their brief stay the residents (no, not patients, not service users) are offered the opportunity to be cared for in a supportive environment and to learn new coping skills. The staff group is consistent, their pictures and names shown on a notice board, so there is continuity of care. Nadia, the Centre manager, shows me round and helps me settle in.

We start with my room. It’s small, but that’s because a section has been used to make an en-suite bath and toilet so I’ll have privacy. Nadia shows me that there are extra pillows in the wardrobe in case I’m cold and shows me how to adjust the temperature on the radiator. “You can leave your things here if you like, and then I’ll give you the tour. Our unit is quite different from standard inpatient care so there’s quite a lot to show you. Our whole focus is on treating this mental crisis as a temporary event. We believe you can and will return to a good level of functioning and everything we do is geared to that end. We like to think we can do a lot for a person in a week.” Drawing back the curtain, she nods at the area my window overlooks. “Feel free to go out into the garden whenever you want. I don’t know if you’re interested in gardening at all, but we can always find something for you to do. The grass doesn’t need cutting much yet but it’s time to get some plants out there in the hanging baskets. Now, shall we take a look around?”

The first door we reach has a reversible sign turned to “vacant” but Nadia taps on the door anyway before opening it. She turns on the lights, which are on a dimmer switch, revealing a massage couch and a floor mat. “This is where we offer residents touch therapy. That can mean anything from full body massage for people who find that relaxing, to hand, foot or scalp massages for people less comfortable with a high level of touch. Our therapists are fully qualified and can use aromatherapy oils and hot stones if that’s something you’d like and you’re entitled to one treatment every other day. All touch therapy’s completely voluntary but we do encourage residents to at least learn some self-massage skills as a way of distracting and self-soothing once back at home.”

We move on to what looks like a mini gym. “Ah, let me introduce you to Amil. Amil, this is Charlotte.” Amil offers his hand. “Good to meet you, Charlotte. I’m a personal trainer. I used to work in a gym but now I’m here at Hope to help anyone who wants to find ways to help improve their mental health through fitness.”

I wrinkle my nose. “I’m not exactly a gym bunny. In fact getting out of bed’s been enough of a challenge lately.”

“That’s OK! Lots of residents feel the same way. I’m not here to make you do anything you’re not comfortable with. I’m a resource for you. If you’d like to try something out, just let me know. That could be anything from having a go on some of the gym equipment – lots of people find it’s not actually as intimidating as it looks! – to learning some basic yoga positions. I’m all about helping you learn a few skills that you can take home with you when you leave us. Have you met Zita yet? OK, well she and I work closely together and she runs regular classes – that’s yoga on Tuesdays and Thursdays and relaxation on Mondays, Wednesdays and Fridays. No need to book, just turn up. And no pressure! We’re here if you want us. Then there’s the quiet room. That’s great for relaxation too.”

“That would be next on my list,” smiles Nadia, “but I think it’s in use right now.” She turns back to me. “The quiet room’s for people feeling overwhelmed by their thoughts or experiences who need to reduce sensory input for a little while. We keep the lighting dim and the room is soundproofed so users don’t have to hear the rest of the unit going about its business, although we have relaxation music in there too if that’s helpful. Some people like to sit in the armchairs, others prefer to stretch out on beanbags or the floor. I’ll show you later.”

Nadia steers me on past the library area (“There are some novels in there but the focus is on self-help books for mental health”) and into a room marked Creative Therapies. “Hi, Tikva,” says Nadia quietly. “Hi, guys. Sorry to disturb you, but can I just show Charlotte what you get up to in here?” There are some smiles and nods, although not all the women are able to make eye contact. There are five of them at a table among an array of paints and coloured pencils. The work of previous residents is displayed on the walls. Some of it is beautiful. Some of it is painful to look at. The Creative Therapies room reminds me of nursery school, but in a good way. It’s a place where it’s OK to play and experiment, pa lace where it’s not necessary to have a goal beyond being and doing. “I love this room,” says one of the women. “It’s brilliant. I haven’t drawn anything since I was at primary school, but Tikva lets you do what you want and she doesn’t make you feel stupid, you know?”

“I believe that every single person has something valuable to say through art. We run art sessions most days,” explains Tikva, “although we’re starting to experiment with writing workshops too. We find it can be really helpful for people to share the narratives of their lives, really help them pinpoint what it is that’s brought them to the Hope Centre. Do let me know if that would be something you’d be interested in.”

“OK,” says Nadia, “now everything we’ve seen so far is voluntary. We’re not going to force you to get a massage or paint a picture. That would be silly. But of course we strongly encourage you to make the most of what’s on offer. You won’t be with us very long and when you have to go back to your real life we’d rather see you leave with as many new skills in your toolbox as possible. We do however expect that you’ll engage with taking therapies. The whole point of the Hope Centre is to get you back on your feet as soon as possible. And that’s not going to happen unless we work together to unpick this crisis and see how we can empower you to stop it from happening again.” This makes sense.

“Since you’re only with us for a few days we use brief solution focused therapy to help residents identify any practical problems that may be contributing to your mental distress right now. Our goal is to help you identify the problem solving skills you already have and work out which issues are going to need specialist help. Our counsellors can refer you to benefits advisors, housing support workers, substance misuse services, parenting support, debt counselling – whatever you need. And if you’re not already receiving psychological treatments we’ll also ensure you’re assessment for longer-term therapy.

“The other thing we ask of you is a medication review. We don’t believe in making people take drugs, but we do believe that our residents should be informed about what drug treatments are available, the pros and the cons, so they can make good choices for them. We insist that our doctors view residents holistically, not just as a collection of symptoms. Meds need to work for you and your work or family responsibilities. It’s never an easy balance but we’re aiming to get the best possible symptom control with maximum functioning in the real world outside Hope.

“We’d also like you to work with one of our Occupational Therapists, again with the focus very much on how you manage once you leave us. Your OT will initially see you here at Hope but will continue to see you in the community to help you manage your time, find activities that are meaningful to you, and support you back into the workplace if that’s what you need.

“Are you ready to begin?”

 

All staff names have been chosen because they mean ‘hope”

 

 

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GUEST POST: Awakening

Hello, Golden Ink again. Been dithering on writing this post but wanted to follow up my last post.

Winter was difficult, I had to fight to get seen by doctors when I was feeling my lowest but eventually I was diagnosed with Bipolar Affective Disorder on 30th January this year.

I’m Grace Wong, a freelance journalist and photographer and I’m blowing my cover as that protective anonymity was never meant to be permanent and I tweeted on Time to Talk on February 6th once I’d had distance and space and felt strong enough to be able to do it, you can read the tweets here.

Want to thank those of you who read my post and those comments. Hoping you are all taking small steps in your own personal journeys wherever they end up leading you. Mostly, I hope in the direction you want to go.

Charlotte and I had some background discussions last year and when I was going through this at the time and she offered me the space here to write anonymously which I couldn’t do on my own blog. Thank you so much Charlotte. Stigma is rife, especially in my very competitive industries and I didn’t want to be pegged just as a first person mental health journalist, after all, I want to have flexibility and chances to write about other things.

However, despite this, I am happy to chip away at that monolithic beast called Stigma as I can and do talk and write honestly.

Lamotrigine is the drug I’ve been prescribed and it is working wonders, there are some niggling side effects but I hope they fade as the dose gets closer to the therapeutic range.

Keeping this post short, it was hard to write one already which has gone up on my blog, please read if you’re compelled to and thank you all for reading and for the kindness of this lovely community.

Follow Grace at @GraceWongPhoto

 

 

Links:

https://twitter.com/GraceWongPhoto

http://gracewongphotography.co.uk/2/post/2014/03/autumn-winter-mind-catalogue.html

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