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Posts Tagged ‘Mental Health services’

When I heard their outcry and these words, I was very angry

Nehemiah 5:6

Last week I had an appointment with my psychiatrist, but it’s only now that I’ve calmed down enough to write about it. I’ve always had issues communicating with my psych – she has the power to clear my mind of everything I had prepared to say – leaving me with just ummms, errrs, and a desire to leave the room as soon as possible. I’m not sure why I find her so intimidating, but I do know that she makes very little attempt to alleviate this, and that responsibility for making conversation falls entirely on my shoulders.

The last time I saw her, this culminated in being discharged, just after I had been accepted by the CMHT. Apparently this “is very unusual” – all I knew at the time was that noone seemed to believe I had really been discharged, and I was even asked for the punchline – it took some effort to persuade other professionals that I really wasn’t joking, and she really had discharged me.

Perhaps some background would help here – during 2009/2010, my psychiatrist was failing to acknowledge letters being sent to her (with my consent) by my YP-place worker, detailing her concerns, and my psych appointments were proving to be slightly less common than hens’ teeth. My worker was concerned enough to discuss my case with her manager, who wrote (another) letter to my psychiatrist threatening to make a formal complaint.

This appeared to have been the magic phrase, as a couple of days later my psychiatrist made a phone call to my YP-worker.  All I know about this call is what I’ve been told by my worker, but I’ve been told that she sounded very “defensive”, and said that as I didn’t have a “severe and enduring mental illness”, there was nothing she could do. Luckily for me, YP-place stuck to their guns, and she eventually agreed to refer me to an occupational therapist, insisting that there was no point as “they won’t see her”.

Needless to say, the OT disagreed, and agreed to see me for 3 months, which stretched into 6 months, after which he had to discharge me as I’d only been referred for “short-term intervention”, but he encouraged us to push for a re-referral to the CMHT in the near future if we felt I needed it, and re-referred me to my psychiatrist to discuss issues of “risk and function” that had come up in the time he’d been working with me. My worker thought this was a positive step forward, and offered to come with me to help me explain how things were.

Suffice to say that, we need not have bothered preparing for this appointment.  My worker and I discussed “risk” in some depth beforehand,  and I was very honest with her, as I believed that this was my only chance to be honest with my psych.

Instead, my words yet again deserted me, so my psych started telling me that she “thought I was better”, and my venlafaxine was going to have to go up – oh and I should take my sleepers at 6pm to avoid the pill hangover in the morning.

My worker tried to bring up the subject of risk, but my psych didn’t really take the bait. Instead, she told me that “we’ve tried our best“, and that I’m “not a child any more“. Apparently, I need to “behave more like an adult“, and “take some responsibility for my choices“.  If I “motivate myself more” then my problems will be solved, and I need to sort myself out because “with the new government” it will be really hard for “physically able people like myself” to prove that they’re incapable of work.

If my worker hadn’t been there, I think I would have taken that advice much more to heart. After all, when I go to see a doctor, they’re in a position of authority, see many patients like me, and (generally) tend to know their stuff – it’s hard not to listen to what they say.  In one fell swoop, she would have set me back about a year with respect to the progress I’ve made on asking for help when I need it, and not trying to take responsibility for everything that happens to me.

You see, what my psychiatrist doesn’t know, is that if I were still a child, I would not be in contact with mental health services, I would not be on antidepressants, I would not be trying to turn my life around. I would be sat on my own, in a bedroom with no working light, trying to end it. There was noone who would sort things out for me and see that I was ok – instead I was routinely ignored and just left to be weird, as if I were the proverbial elephant in the room.  I only managed to tackle my teenager issues once I became old enough to drag myself up by sheer force of will, and encountered some perceptive sixth form teachers who gave me the space I needed to put myself back together, and the approval that I needed to build my self-confidence.

My psychiatrist also doesn’t know (and hasn’t asked) that I’ve spent the last 6 months putting a lot of energy into doing the “adult” thing, and fighting the DWP, that I was preparing myself to represent myself at a tribunal, and thus trying to do the responsible thing and stand up for my rights as a British citizen.

I am painfully reminded of my adulthood every time the council bill me for my council tax.  I pay my bills (mostly) on time, I make sure I have a roof over my head, I give my seat to elderly ladies on the bus (if I’m not feeling too ill myself), I gave half my DLA Christmas bonus to the guy who sells the Big Issue.

So, what gives my psychiatrist the right to remind me that I can’t be childish anymore, that my lost childhood is, well, lost? And to then twist it around and make it my fault?

I am not a child any more, I am an adult, who understands adult things, that the people in authority aren’t necessarily right. An adult, who has room for feelings like “righteous anger”.

She gave me another appointment, for June.  I’m fully expecting to be discharged again at the appointment. I’m staying on the same venlafaxine dose, and I’ve stopped taking anything at night. Ironically, I’m feeling much better in the morning now, and I suspect that I was suffering more from the side effects than I had been benefiting from it.

Bonus points to anyone who can explain the title of this post.

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Testing Times

My psychiatrist appointment is going to be rearranged – my care-co couldn’t make it, and I declined to go alone.

I had my “initial assessment” with the PCMHT today. I wish I could say it all went swimmingly and will be referred onto psychology as planned.

It didn’t start well when she revealed that she knew next to nothing about me. Past notes are archived after two years, and the only thing she had about me was a letter from my old psych – written in June. Not a trace of my GP’s referral, which was the one my care-co said he’d been told they were acting on. So, this was referral #3. With #1 never having gotten off the starting blocks, and #2 seemingly MIA, I was left wanting to throw something very messy at mental health services.

The truth is, it seems, there may be some issue about who funds this therapy that everyone seems to agree I need. It’s apparently “very unusual” (sounds kinda familiar) for the PCMHT to see someone who is also seeing the CMHT. I showed her my care plan, in an attempt to clear things up, but it backfired spectacularly – after she’d read it, she told me that what she’d read in it made her think I should be seen by secondary care psychology. She almost looked intimidated – I could practically see her mentalist alerts flashing, which was rather disconcerting, and gave me a lot of guff about “knowing how annoying it can be when different services keep saying no to you”. She did then try to ring my care-co, but he wasn’t in the office (he never is), and that was very nearly an end to the appointment – but I did manage to convince her that going ahead with the assessment would save time just in case, especially since my care-co is only planning to stay involved “until the psychology referral is sorted” (having been the person who first uncovered what a mess the professionals have made of this, I think he’s trying to make sure I don’t slip through the cracks again).

It then took her an hour to do the flipping risk assessment. I was surprised at how affronted I felt over being asked to “give my assurance that I wouldn’t try to hurt myself”. I tried to explain that not even my worker at YP-place has ever asked me for that, and there was no way I’d give that to some random lady, however well meaning, that I’d only just met. The only person I can recall who ever asked me that was a psych nurse in the hospital, who was trying to work out if I was OK to discharge (having spent the whole weekend in a 12 hour assessment unit, while other patients came in and were sent home around me…). Even when I’m suicidal, asking me questions like that only makes me lie – how is that a productive question to have on a risk assessment if it turns your clients against you?

In the end I offered up an alternative question that I was happy to answer (and luckily, in the negative), stolen from previous risk assessments “How likely is that you might try to harm yourself?”, but I don’t think I managed to get across to her just what my objection was. Apparently they “always ask everybody that question”.

By the time we finished the risk assessment, we were already 90 minutes through a 60 minute appointment, and she was struggling to fit everything into the small boxes on the form. She suggested we break it there, and meet again to finish the assessment, which we were, to quote “nowhere near finishing”.

Then she started in on the page headed in big bold letters “Evidence of serious mental illness”, trying to cram more of her very small writing into too-small boxes. I reminded her that she’d already proposed to stop – she countered that this bit was important as it could be “the sticking-point”.

All I can say is that I’m glad I finally convinced her that I was getting really fed up of it and wanted to stop there before we did any more “just the next page”s. She never did get to finish quizzing me on hallucinations, illusions and delusions, which was a good thing, as by that point I was downplaying everything, trying to convince her that I was mental enough to need a psychology referral but not so mental that it was inappropriate.

I did, however, have to wait for yet more time, while she photocopied that oh-so-damning care plan.

Outcome: I have to wait to hear whether I’m deemed too severe to be seen by primary care, and booted up to secondary care (who, of course, as we all know, only see people with Severe and Enduring Mental Illness, which of course I’ve repeatedly been deemed not to have).

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An Exercise in Comparison

I’m using the “relapse indicators” part of each document, because, frankly, that’s the only bit they share in common.

Compare
 

CPA Care plan, present

  1. Chouette no longer takes medication because of lack of insight
  2. Chouette thinks about taking her own life and has ideas that suggest to her that suicide might be a positive thing to do
  3. Chouette hears voices or believes other people might be talking about her in public
  4. Chouette has difficulty differentiating between reality and her dreams, experiences depersonalisation and/or wanders

vs.
 

Crisis Team “discharge plan”, last year

    Disturbed sleep, loss of appetite, suicidal ideation

Which one looks most like it might refer to my past?

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Dip your hand in, swirl it around, claim your prize – an appointment with a strange psychiatrist.

Not sure if this was as a result of some nagging and complaining from professionals at young-people-place (clearly I need a snazzy abbreviation), but the appointment that I’d made with the consultant psych I’d been seeing morphed into an appointment with a registrar. What can I say? He was nice, asked questions… and couldn’t even get my name right.

In fact, on checking my appointment card afterwards, it seems that the receptionist couldn’t get my name right either – it’s in my mother’s name(!)

Anyway, apparently this psychiatrist doesn’t do labels – he suggested cyclothermia as a possibility and said that other colleagues who were “more interested in labels” might say I was somewhere on the bipolar spectrum, but he “didn’t want to do that to me”.

So… I’m happy with that because I don’t particularly want a Big Diagnosis, especially if it wouldn’t affect my meds, and happy to be left with a woolly warning that anti-ds might make me high, which, to be honest, I think we’ve all known for quite a long time…

Buut… there’s a massive contradiction going on here.

The support(?) that’s available is explicitly governed by what Label you have, not your needs.

But, in my case, and I suspect others, being Labelled is deemed Bad.

Hmmmpf. What does “possibly a bit bipolar” allow me?

Finally, to confirm my idea that he was either naive, clueless or had just started a new job, he offered to write a letter to the psychology department to ask if my (currently at 14 months) wait could be expedited a little. Suffice to say that he’s not the first doctor to suggest this, and suffice to say that I’ve previously been explicitly told that “unfortunately it doesn’t work like that”.

Now all I need to panic about is seeing my parents over the bank holiday, and an occupational therapy assessment next week that I’m not feeling optimistic about as I was only referred for it under the pressure of a threat of a formal complaint.

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Got the reply to my DLA application today.

I’ve been awarded middle rate care and lower rate mobility

Hard not to feel like I’m a fraud, especially since, as my psych reminded me last week, I don’t have a “severe and enduring mental illness”, and thus can’t get any help from the NHS except what I have atm (3 monthly psych appointments and an infinite waiting list for therapy in primary care that I was put on over a year ago).

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So, after seeing my second psychiatrist in two days (with, luckily, the same conclusion: don’t need hospital, do need crisis team), Crisis finally came round and assessed me today.

Unsurprisingly, they were reluctant to take me on, and said that they’d be doing me a disservice by doing so (they also complained about “budgetary constraints”). However, we’ve compromised that they’ll have me for a week just to help me get some longer-term support in place, as I’m too deeply mired to be able to do it alone. It’s the exact outcome I wanted, so I don’t know why it’s not making me feel happy, why I feel like I’ve been punched in the face and then kicked some more for good measure.

I mentioned CMHT, but, again, unsurprisingly, it appears I’m still not “severe and enduring”. Instead, they’re going to ring up the PCMHT and ask if I can see someone other than the chocolate teapot, and liase with the young people’s place to see if they can offer me more support as well. And I think they’ll be bringing my psych appointment forward as well.

All well and good, and I’m sure the young people’s place will step up to the plate, though less sure about the PCMHT, who were the first people to ever point me in the direction of CMHT.

My worker (with the young people’s place) is unavoidably away this week, so I can’t see her tomorrow and tell her she was wrong. Wrong to tell me that if I made up my mind to ask for help then it didn’t matter who I asked, that they’d help me and shelter me and give me a hand. Wrong to say that there was support out there through the NHS for people with “severe mental illnesses”, to suggest that the NHS would be able to “support” me, to try and “stabilise” me, to take away some of the burden of my own care, to “make sure I’m in hospital when I need to be”.

Because I asked my GP, and she referred me to A&E. A&E referred me to the Crisis Team. Crisis very nearly discharged me straight back to my GP.

I don’t fit any of their little boxes.

I’m just Chou, and I seem to be falling through the gaps.

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What to do when the PCMHT don’t want you because you’re too severe but not severe enough for the CMHT?

Blue Skies and Green Grass

I think I may have found this out, at long last.

Dropping down to crisis point seems to have mobilised referrals and people in a way that would never have happened otherwise. The crisis team are on the verge of discharging me, but I now hold promises of a referral to both the Primary Care Clinical Psychology service and to a psychiatrist for regular follow-up over my meds – so I suspect I shall be seeing that blue-green waiting room a few more times. Unlike last time, they are insisting on creating a crisis plan with me before discharge.

Both my worker at the young people’s place and the crisis team have independently expressed the idea that they should talk to the other side. Whether that phone call has actually been made, I don’t know, but I know that my worker was very keen on putting her head together with them/my GP before I’m discharged, and working out a way that she and my GP can keep me from “falling through the net”… like I very nearly did this month.

Frankly, if they do talk to each other, I will be A) amazed, but also B) relieved. I’ve gotten fed up of playing the chinese whispers game, and of forever being the one to relay information between services. Yes, I realise that there is an issue of confidentiality here, but there is some automatic liason between NHS services that simply doesn’t happen between my worker and those same services. When I was discharged from the hospital, one of the nurses there gave (after asking my permission) my worker a phonecall to explain what had happened, and followed it up by faxing a letter that she could keep in my records. Sure, it was a simple thing, but it made the world of difference to me at a very vulnerable time – I did not need to explain the details yet again, or even work out how to broach the subject… instead the time of our session together was freed up for deeper conversation. I did not need to say anything, because she knew, and she understood.

So, this seems to be where I stand now: freed of the PCMHT, and with a potential pic n’mix from both primary and secondary care (as, to be fair, I expect most people have).

I hope it doesn’t all go back-end-up again, but I really do fear that it may.


NB: I’m drafting a post to try and explain what was going on in my mind and in my life prior to this post, which might help make more sense of my posts since, but I haven’t really wrapped my head round it yet myself, so it will be a while in the coming.

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