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.