We’ll having arrived safely hone from my journey to the Arctic circle, I am straight into operation CPA mode, as this week I face my first CPA meeting in six months, to say I am dreading the experience would be an understatement.
A CPA meeting is a Care Programme Approach meeting more information on these is available at http://www.rethink.org/resources/c/care–programme–approach-cpafactsheet
If there is one thing I have found the most difficult as a service user of mental health services it has to be the concept of care planning meetings, these meetings are crucial to the future delivery of the funding for my care program and my long term psychological therapy. They are as traumatic an event as one could imagine, as the pressure feels intense and rather than being conducive to my progress and well-being they have previously caused me to spiral downwards.
I am not sure that the professionals who attend these meetings actually realise just how daunting these events are for me and my alters, or even for that matter if they care. It seems as if it is just a process that they have to go through and to which I am just a pawn in a wider game of funding cuts and bureaucracy.
The thought of this meeting has plagued my thoughts for many weeks and especially in the latter days of my holiday I found myself thinking more and more of the impending meeting. Certainly since returning home it’s been hard to not feel overwhelmed about it all, to not think of the potential outcomes that may arise. I guess if I am honest I feel over powered by the professionals, outnumbered by them and at times outwitted too.
This meeting like many before was meant to have the usual people in attendance , my care co-ordinator who is faced with reducing staff numbers and increasing work-loads, who basically goes through the motions at these meetings and sees me as a commodity. He finds Dissociative Identity Disorder complex and overwhelming and often refers to me as a complex case who has after all been in secure services, I can only assume that this means therefore in his opinion that I must be a risk!
The local trusts psychology professional who thinks she understands Dissociative Identity Disorder, yet in truth has so little understanding of the condition or me. This person will insist if I switch in the meeting that the meeting is stopped until I magically resume being me, she won’t talk with my younger parts nor has she any desire to know anything about the reasons why we have D.I.D. It’s as if she cannot comprehend that the alters are all parts of me, and that I have no control over my switching, I find her approach and her ability to furrow her eye brows both frustrating and irritating, she often triggers me as her approach can be quite condescending, often authoritarian and that reminds me of my mother. We only ever meet at these meetings for which I am rather thankful, I think I couldn’t cope with seeing her more often, she has no real involvement in my care yet somehow seems to wield a great deal of power.
A person from the social services outsourcing agency who overseas direct payments which fund my support package, her role is mainly an academic one as we only ever meet her at these meetings and she has no other direct involvement in my care. Her job is to basically ensure we are following all the procedures necessary for having a direct payment budget, that’s something my daughter deals with as it’s too complicated for me. Alongside my daughter who is my nearest relative and myself who both find these meetings stressful and not particularly empowering or enabling.
However this meeting will be unlike any before as my new psychologist will also be present, I am really unsure how this will go as I have no idea what to expect from him on these occasions. It might help that I will see him ahead of the CPA, though I do worry what if something upsets me I won’t be able to discuss it with him until our following session a week later.
I’m not sure whether he will say what he thinks or will he say what the professionals from my trust want to hear, after all it’s the trust which has the contract with him not me. I know that we are making progress since starting work with him, and I trust him as much as I dare trust anyone, I’d like to think he’ll be fair and say what he feels rather than treading carefully and being politically correct in the ‘professional’ sort of way, I hope he’ll say if other professionals make nonsensical or unfair statements about us or about D.I.D, but I worry that like previous therapists before him he’ll just be the professional that he is and take sides with the other professionals in the room.
This may sound like its a them and us kind of event, that’s not how I want it, but it is how these meetings are often played out by the people who attend. I often feel like a pawn in a chess game which I have absolutely no control over, it’s not uncommon for the professionals to meet before hand and plan their agreed decisions before we even enter the room. We are then just told the outcomes and have little input in our future planning or the decisions that they make, so much for the agreed care pathways, and a joined up approach.
There will also be a notable absence this week, though no professional has had the courtesy to inform me, and no one from the health trust has felt the need to inform my nearest relative either, but we found out on Friday second hand that my Care Co-ordinator is off sick so won’t be attending the meeting he has spent the past couple of months planning. Indeed I am led to believe that the one person I will find greatest difficulty with is to chair the meeting. Now this might not seem such an issue to the healthcare professionals involved, but to me it’s huge and I am left wondering if I can actually attend my own care planning meeting.
The trusts psychology professional who triggers me is to chair my meeting, she hasn’t even set eyes on me once in the last 5 months, so I am unsure how she can lead on this. then again she hasn’t seen fit to inform me that my care coordinator is off sick. Maybe in her opinion I don’t matter, well that’s how it feels and her lack of communication hasn’t eased my worries or improved my trust issues that I have with her.
The toll of this meeting will be great, it would have been even if my care co-ordinator had attended, I will find sleep difficult the night before, I will feel sick due to anxiety and I will struggle to not switch from one alter to another rapidly, as seems to be more prevalent when we are highly stressed. I’ll likely lose sentences in the conversation that ensues and then wonder what I have missed.
I know we will take along at least one of our comforting objects to this meeting, I don’t think you’d get me in the door without them, my fear and anxiety will be so great. I probably won’t eat that morning or lunchtime ahead of the meeting and by the time we arrive I will most likely have descended into floods of tears at least once in the preceding hours. It’s probably a good job I have a therapy session on the day of the meeting as it gives me a reason to get out of bed and not hibernate and avoid.
I know I will whatever the outcome analyse and reanalyse the meeting over and over again, worrying and stressing about each tiny little comment or off the cuff remark. I will be exhausted by all of this and it will take me some days to recover.
These meetings are meant to be about planning my care for the next few months, ensuring my views and that of my family are heard; well that’s what I’m led to believe should happen. In theory it all sounds so laudable but in reality is very different, I am often overlooked, and I am seen as a commodity and not a person. My Dissociative Identity Disorder is so misunderstood by many of the people in these meetings and I am left feeling guilty for being dissociative, for having alters, for basically for being me.
The annoying thing is that I want to just be treated like everyone else, an equal partner in my care. I want to not need all the help, support, money and time which I currently require, I desperately want to stay out of the revolving door of hospital admissions too, they robbed me of years of my life.
I know the cost of meeting my care needs today when compared to previous years is reducing, indeed compared to when I was in hospital it’s significantly cheaper, yet the professionals seem to over look that fact, instead they see a cost and a person to blame, namely me. Do these people really believe I wanted to be hurt as a child, to have D.I.D, because I didn’t and I don’t. In fact truth be known I didn’t ask for any of this I cannot help who we are, our symptoms or our needs this isn’t my fault, yet that’s how they make me feel. Perhaps that’s the hidden purpose of care planning meetings to make service users like me feel guilty, or maybe it’s to encourage our disengagement from services, it’s sure not about forward thinking approaches to care needs or service user involvement and empowerment, well not where I live anyway.
Copyright DID Dispatches 2014