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?


About purplepersuasion

40 something service user, activist, writer and mother living with bipolar disorder. Proud winner of the Mark Hanson Prize for Digital Media at the Mind Media Awards #VMGMindAwards
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9 Responses to Dude, where’s my cast?

  1. kellyf2014 says:

    A really insightful post which mirrors my own frustrations with the home treatment team. What is even more frustrating is that (at least in my experience), when you voice your frustrations with the service this is then seen as being symptomatic of your condition. Never mind that fact that anyone (mentally ill or not), would find the situation exhausting and frustrating. I believe in you though….keep going and don’t let them win! 🙂

    • I am very lucky that Tom can come with me – they know he is a manager in another Trust and a former clinician. But if I were just saying this stuff on my own I am pretty sure that yes, my irritation and frustration would’ve been seen as symptomatic by now!

  2. kellyf2014 says:

    I also refuse to go to these appointments on my own, and am lucky enough to have two friends who are happy to come with me. It’s a shame that it has to be like that though in order for our voices to be heard!

  3. sally says:

    Grr how frustrating for you. My son was suicidal and at crisis point during a mixed state. I (his Mum) contacted HTT for support for him and was told he needs to contact them himself, I explained he is reluctant to as he has been sectioned 3 times and is scared. We can’t help him if he doesn’t want to engage, was the reply. I continued to explain that my son had only just moved out of home, had changed psychiatrist (previous psych for 6 years) and CMHT, and somebody needs to reach out to him, to gain his trust. The hope being in times of crisis he would call cmht himself. That was 4 months ago now. No one called.
    So many teams eg. Early intervention service, cmht, think success for them is based on how many calls they get from service users. In fact it is due to forced apathy why we don’t get in touch.
    Since that phone call my son has had to find his own solution to the alternative of his suicide. He has taken himself off Lithium slowly and has halved his Seroquel, still on Lamotrigine. However now he has found weed and he believes this helps him function. He says it slows down the cogs in his head to that of a regular person and he can actually have a day.. of sorts. The support team at his new accommodation know, and have told CMHT. You would think they would be in touch with him knowing all this new information. No. That was 6 weeks ago. I have made a complaint to the trust. One of many I have made over the years, for what good it will do. I sound such a cynic, but they have made me one. So many plans not worth the paper they are written on..
    Charlotte, you are are a wonderful woman and I am so glad you have Mr Blogger to support you. You are having an awful time and my heart is with you for a little respite x

  4. thegirlfrommarz says:

    Hi Charlotte. I’m so sorry to hear things have taken a turn for the worse with the HTT – it seemed like things were looking pretty positive with them in your previous post. It’s disappointing that you’re having to fight so hard and that the lack of organisation has made it even harder. What you describe sounds Kafka-esque for the person in crisis. I hope it goes well tomorrow, and that someone finally starts listening to you and plasters your leg instead of getting out the wobble-board. K xxx

  5. Brenda Still says:

    I’ve followed you on Twitter for a long time now, Charlotte, so I’m very aware of how things are for you just now. I desperately feel for you. You know what you need, your own Consultant knows what you need and this shambles of a service, The HTT (Doctors) are arseing you about with these assessments when the answer seems so simple to the rest of us. START YOU ON THE NEW MED. Grrrrrrrrrrrrrrrrrrrr!!! Would the HTT Consultant be happy to accept this treatment, if his wife was in your position? It’s so totally unfair for you to have to be dealing with all this bullshit on top of all your own stuff. I really do hope things change for you VERY soon.

    Sending love and hugs from Bonnie Scotland.

  6. Susan Baird says:

    thanks for this. It is sadly familiar

  7. Carol S says:

    I’ve been reading your great blog for a month or so and am really bothered by your experiences here. Am winging you love and strength and energy and rest.

  8. Pingback: The Adjustment Bureau model of psychiatry? No thanks | purplepersuasion

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