Two days ago, I had an appointment to get my lithium bloods done. At my discharge review last Monday, I met a nurse that said it was likely she was going to be my new CPN. She told me to bring along the DLA forms she was requesting for me and that she’d help me fill them out when she saw me next. So that’s what I did. At the appointment the other morning, she took my bloods, asked how my sleep and mood had been since while she was taking them, and told me I would be seeing the psychiatrist on 11th May. And that was that. I hesitated as I got up to leave- she’d mentioned nothing of another appointment, or whether it had been confirmed who my CPN would be, the forms I had clutched in my hand, or indeed, of when I was likely to hear about my blood results- should I ask her? Is she going to make another appointment? Call me? In the end, I said nothing. Because I didn’t know what to say, or how to ask. So I left feeling a bit ‘Oh. Well now what?’
When I got home, I rang my therapist’s office. I informed the receptionist the day I was discharged that I was now out of hospital and able to recommence therapy, and was told my therapist would ‘be in touch’. It had been two weeks since I was discharged, and I’d heard nothing. So I rang to try sort that out, and was told my therapist is off on a few weeks annual leave. And that she’ll be in touch when she gets back. Again, I hesitated- how long was a few weeks? When is she likely to be back? Again, I said nothing.
So I’m a little frustrated. I have been out of hospital for two weeks, and besides a ten minute review in two weeks time, I have no idea when I’ll next see someone from Mental Health Services.
I’m well used to it- and that’s exactly where my frustration lies. I shouldn’t be used to it. Because the fact of the matter is, I have spent six years in services, and six years pushing to get treatment. In mental health, everything seems to crawl along at snails place- it takes months for referrals to go through, months for the right people to complete the right paperwork and send it to the right people, and longer still for the right people to do something about it. And time and time again, I am finding that if you don’t chase things up, they don’t get done. If you don’t chase things up, you fall through the cracks in the system.
Take my recent manic episode. I tried on 3 separate occasions to tell someone things weren’t quite right, in addition to my therapist being aware. My therapist works for a specialist service that is still part of the health trust/mental health services in my town. Yet despite acknowledging that my mood was heightening, there wasn’t much she could (or did) do, bar tell her supervisor. On the first occasion I rang the CMHT and asked to speak to my consultant, or be able to pass on a message. I was put through to his receptionist, who asked what I wanted, and explained that my mum was concerned about my mood and wanted me to speak to the doctor/let him know. She said something like ‘ok,’ and hung up, without asking what exactly about my mood was concerning. Needless to say, nothing was followed up. A couple of weeks later I saw my GP, and at the end of the appointment we talked about my mood and she asked a few questions and told me this wasn’t how I was before I first Got Sick, and said she’d tell my usual psychiatrist. If she did (I’d be surprised if she didn’t, she’s fab), it wasn’t followed up. A couple of weeks later, my mood continued to escalate in the way my GP warned it would and I end up on the phone to the crisis line because I think it would be a bloody excellent idea to jump out my window to see if I can fly. The nurse tells me this is Not A Good Idea, and asks me if I need to be in hospital, and I laugh because why would I need to be in hospital? She tells me she is requesting for someone from the CMHT to contact me the next day. They don’t. So three times in a matter of weeks that people either didn’t pass something on to the right person, or the right person didn’t contact me. Three times someone could have, and didn’t, intervene, and could have, and didn’t, prevent the subsequent escalation of my mania and hospitalisation. Three times in a matter of weeks, that I had to 1. self advocate and 2. fell through the cracks regardless.
Self advocacy, I’m finding, comes part in parcel with being a mental health patient. Since the beginning, I’ve had to do it.
Rarely have I had a psychiatrist’s appointment that I didn’t have to chase up. Rarely, have I had an appointment on the date I was told it would be, and with the doctor I was told it would be with. I’ve learnt to make a point of asking when I can next expect to see the doctor, because too often I’ve been left waiting for months on a letter that was never going to come. And the 6 or 8 weeks they promised will come and go and four months later I will finally pluck up the courage to find out what the hell is going on, and I will be told ‘oh, you were in for an appointment six weeks ago but it was cancelled and it doesn’t say why on the system.’ And I think, of course it doesn’t. Because that would be too easy. And when I eventually get to actually attend an appointment with the doctor, if it is not someone new entirely, it is usually not the same doctor I saw previously. So instead of recapping 5 months worth of moods and behaviours and life, I might have to fill them in on like, two years worth of stuff.
Like I saw my psychiatrist in August last year, and she said she’d see me in six weeks. Which came and went. Twice I ended up being assessed by out of hours, and twice the duty CPN tried to arrange for a meds increase/appointment, because as it turned out, I had had an appointment, but it was cancelled without reason- obviously. So it was November before I saw her, and again she said ‘six weeks’ and again, by January I’d heard nothing, and again, when I did, my appointment was later cancelled. So again, I ring up to rearrange and am told it will be March before I can be seen. And by now I am manic, and have been for a couple of months and I have tried ringing the CMHT and I have spoken to my GP and nothing has happened, and only because I am manic do I say ‘you’re taking the piss’ (albeit, more politely) and now that I have put my foot down she is suddenly, magically, able to conjure up an appointment for the next week, with the same doctor who, thirty seconds before, was booked up for the next two months.
It’s a fault of the NHS at large- bureaucracy, managerial roles, lack of funding, misdirected funds- the whole adding layers to the system that means the actual delivery of healthcare gets obscured by paperwork and legislation and too many fucking people. Probably. I don’t really know what I’m talking about, other than the fact I’ve found it takes forever for things to actually happen, and that if I don’t kick up a big fuss, I’ll get lost in the heap.
As a patient, it is my job to get treated. And I don’t think it’s entirely unreasonable to not have to sit in front of a psychologist and explain why I’ve been referred to her, because the consultant hasn’t passed it on, or to attend an appointment where the doctor is expecting me, or to have the doctor doing your discharge follow up to know that you, er, have been in hospital. And I think that when time after time, it is me- the patient- who is having to orchestrate my treatment because the people who are supposed to, aren’t, I am allowed to feel a little frustrated. Because I feel like I’ve spent most of the past six years ringing up and enquiring after lost appointment letters and cancelled reviews and listening to people tell me that they don’t know, or that X thing that Y person said they would do, hasn’t been noted on the system.
Quite rightly, my mum said the other day what happens to people who can’t self advocate? Who can’t pick up the phone to find out what’s going on because they are crippled with anxiety, or lack the will or motivation or insight to fight for treatment? Who advocates for them? Because often, I tick all of those boxes, and it is my mum who has to make the phonecalls herself, or push me relentlessly to do so.
And the thing is, I wouldn’t mind if I was told ‘it’ll be seven months before you next see the doctor, three and a half years before you get an assessment, we don’t know who your CPN is, or when they’ll be in touch’, because at least I’d know. But I am not being told pretty essential things about my care- and by the sounds of it, no one else is either.
So for now I do what I always seem to be doing when it comes to the CMHT- spend the next couple of weeks trying to decide whether or not I should ring and find out who my new CPN is, when I’ll see them, or if, indeed, I’m still getting one- or whether I’ll come across as too pushy. And in the meantime, I’ll clutch to the naive hope that they’ll ring me and save me the bother.
*I have received amazing care from the NHS, and am endlessly grateful that we have it. And I know that I’m fortunate I’m with the CMHT at all because I know a lottt of people who are left to struggle with zero support. I’m just letting off a little steam.