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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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 2013. Winner of the World in Mentalists Mood Disorder blog 2012. Regular guest blogger for the International Bipolar Foundation http://www.internationalbipolarfoundation.org/ Expert by Experience working with Mind training department. Working on The Incoming Tide, a bipolar memoir. Find me on Twitter @BipolarBlogger or at my Facebook page http://www.facebook.com/BipolarBlogger
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30 Responses to The Adjustment Bureau model of psychiatry? No thanks

  1. M says:

    Bravo Charlotte! Well done for being strong enough to challenge the constant shuffling around the medical people do with us. I hope you get better information now and whatever help you need.

    • Cheryl Prax says:

      Hopefully you will take steps to take control of your own life and not expect others to sort it out for you.

      • Not sure what you are saying here….It *sounds* like you don’t think it’s OK for a person with a severe and enduring mental illness with a high mortality rate and reduced life expectancy to want professionals to work on reducing their level of suffering and to “sort my own life out”….but you can’t possibly mean that…

      • Cheryl Prax says:

        ‘Recovery begins with Non-Compliance’. All I am saying is that you will be better off out of the paternalistic ‘mental health system’ and seeking your own recovery – not looking to others to do it for you. The current ‘mental health system’ is there to maintain you not to cure you. Speak to ‘Survivors’. They know what I am talking about. BTW it is not an ‘illness’ it is a reaction to trauma and social issues. A pill can’t cure that. The reduced life expectancy is due to the pills – they destroy body and brain. Google it. Hope you realise sooner than later.

      • Sorry, I just don’t believe any of the things that you do. I am nobody’s puppet. And something can be BOTH a illness and be caused by trauma. For another thing I have found the input of many professionals extremely helpful. And although the meds do contribute to reduced life expectancy, the far greater contributor is suicide. And without my meds I am at greater risk. And as for “realising” – I used to believe what you do. Then I saw the light and wised up. And my current partner’s a mental health professional. So the chances of me undergoing a reverse conversion are nil. I don’t need or require saving from the system, thanks all the same.

      • Cheryl Prax says:

        Of course you won’t be their poster girl anymore if you rebel. But you won’t be their puppet either.

      • I have nothing to rebel against except people like you in anti-psychiatry movement and their pill shaming, and I will continue to fight against this poison and the damage it does. Again, I ask you if you dislike by beliefs and my activism, why on earth do you follow me? Why not save yourself the irritation of having to accept that other people consider *your* beliefs damaging?

      • Cheryl Prax says:

        20 years on psych meds – it would take a very long time to taper off the drugs as they would have changed your brain dramatically. What a shame there was no other help offered and I don’t just mean counselling. Like intense social support. People need help not drugs.
        Following you – I honestly try to avoid you but then our paths cross on Twitter and the wounds open up again!
        Rethink and MIND do not represent psychiatric survivors. They only represent happy ‘service users’. They are used by Government and Psychiatry as the ‘voice’ of the ‘mentally ill’ which they are not (and we are not ‘ill’ either). They promote drugs and electroshock both of which ruin people in the long term – studies show. Read ‘Cracked-why psychiatry is doing more harm than good’ by James Davies. More readable than ‘Anatomy of an epidemic’ by Robert Whitaker.
        I wish you well.

      • Please, PLEASE stop telling me what to do/think/believe/take/read. I’ve honestly had enough. And how on earth can you say you “try to avoid me” when you deliberately choose to come to this blog, which you know to be managed/written by me, and me only?? And how can you “wish me well” if you feel I am someone you should so assiduously avoid? There appears to be precious little sense in all this and I doubt you even know what your own motivation is for repeatedly commenting, however I’ve been as patient as I can but I truly have had enough. This is the last comment I will be approving. Any further comments, unless you are able to engage in a proper conversation without issuing orders as to how I ought to live my life, will be trashed. Thanks.

      • Cheryl Prax says:

        Studies show suicide (and homicide) is more likely on the drugs than off as they make you numb. You are a puppet. You would not be given an audience if you weren’t saying what they want. What really concerns me is your influence over the gullible who will also ruin their lives with psych drugs.

      • sally says:

        Oh my, what an unpleasant person Cheryl Prax is.

    • Cheryl Prax says:

      Sally. I just can’t bear people being tricked by psychiatry and drug companies to believe there is something wrong with their brains and worse, with their children’s brains which need psych drugs. I am really sad and also angry about this. I can only hope that a seed planted will grow.

      • Cheryl Prax says:

        Charlotte. Ask your mental health professional partner what patients look like when they have been in the system for years.

      • I’ve been in it for years. 20.

      • sally says:

        I understand you feel very passionate about your experiences and your desire to spread the word. You are of course entitled to your own opinion. However, belittling and condescension is not in my opinion, a helpful way to do this You imply that we’re not enlightened like you and I find this insulting. We are just all trying to find our own way. Passing harsh judgement on others is unkind. Thoughtful advice on the other hand is always welcome. Charlotte is not seeking fame and fortune, she blogs to help herself and others. People gain enormous strength from her strength and experiences.

      • Cheryl Prax says:

        I’m sorry to offend, but it distresses me that the powers-that-be only give a voice to people who are happy to be patients and not to Psychiatric Survivors who have escaped the system. You would think that they would be happy to hear from those who have got off the drugs and live a normal life. You would think they would queue up to ask how they did it. But no as this would endanger their profession. So instead they get the happy ‘service users’ to help promote the psychiatric labels and drugs for them. Rethink and MIND too do not speak for us but the public think they do and so the truth never comes out.

      • Thanks, Sally. Personally I find the whole anti-psychiatry movement patronising and condescending with their anti-medication rhetoric. I’ve been pretty patient with this discussion so far, but I’m not going to continue this thread for much longer.

      • I’m afraid it’s unlikely to, given the way you post. People will be highly unlikely to come round to your way of thinking if you call them things like “puppet”, put your POV forward with no supporting evidence and an utter unwillingness to have a general debate. As I said, I used to think like you. The seed that grew for me was that refusing meds, refusing psychiatric treatment did not help. It didn’t help me, it destroyed my first marriage, it didn’t help my poor children who were brought up by an extremely unwell mother treated only by an out of his depth GP. I find the idea that I don’t know any better really rude, frankly.

    • Cheryl Prax says:

      Unfortunately with the endorsement of ‘service users’ and Rethink and MIND it makes it easier for psychiatry to forcibly drug and electroshock those who do not want it, ‘For their own good’.

  2. Liz says:

    Your courage in documenting these experiences helps to expose the difficulties that exist in enabling one’s voice to be heard – even where respect and transparency are built into policy. Your energy and resilience in holding power to account once again helps me and gives me the courage to keep going. There can be a chasm between policy and practice. You are placing stepping stones for all of us who challenge these gaps wherever they are found.

    • Thank you, what a lovely comment! I have been thinking all along that if this how they treated someone well-connected in the MH world with a large amount of knowledge and a parter who’s a senior manager in MH….well, what on earth do they do to the rest? :-/

  3. After I picked my jaw up off the desk, where it dropped when I read that they had “relabelled” your mental health issues, without even telling you, I then cheered when you wrote about how you held them to account and made it clear that you were going to have a say and that they listened. Well done. I have to say, I myself have had excellent support with my treatment for anxiety issues, but I have been in the system when I was the carer for my friend with BPD and gosh, it was sometimes a run around of miscommunication, lack of implementing plans or changes in plans without explanation or reason, and too many opinions….
    Thank you for sharing.

  4. sallyjoanne says:

    Highly recommend Professor John Geddes ( National expert in Bipolar). The Warneford Hospital Oxford. So knowledgeable, forward thinking, non judgemental and kind. Wish they were all like him. Check out NHS Choices Bipolar, on Google. He chats about BP. He was particularly understanding of mixed mood, rapid shifting and irritability and came up with original effective ideas. Good Luck Charlotte.

  5. sumegoinvicte says:

    It’s scary that they can change diagnosis and not even tell you. Seriously, if everyone concerned with your mental health, and that most certainly includes you, aren’t reaching for the same goal, how do they ever expect to get there. You are so brave standing up for whats right. That’s difficult for even the most mentally healthy person, let alone someone dealing with such difficulty. You really are a champion for those with mental health issues. Thank You.

  6. sandrassp says:

    Reblogged this on SandraSSP and commented:
    Great blog about how we can be painted as unreliable narrators.

  7. Caroline says:

    Just discovered your blog, Charlotte and very impressed by your generosity in sharing, clarity, and persistance in the face of what appears to be defensive inappropriate behaviour from professionals. Thanks

  8. Pingback: Happy | purplepersuasion

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