Fearing my Care Coordinator

In 2 days time I face meeting my Care Coordinator for the first time this year, I am somewhat reluctant if truth be known as it seems like forever since I last met him even though in reality it is about a month. I am concerned because when I spoke to him last week; he had to rearrange our appointment, he was asking lots of questions about my therapy. I have been seeing my new therapist since the middle of November  and things are going well but I view that what happens in therapy stays in therapy and it’s not really up for discussion with anyone else in my Care team.

I can foresee issues with the care coordinator whose knowledge of D.I.D is to say least limited, how do I explain my progress, which for me is vast and great and yet I know to him will be perplexing and seem slow, it’s not what he will want. I currently have some support in my daily life, so the Clinical Commissioning group fund the help I receive as part of a Section 117 after care package.  For those that don’t understand the Mental Health Act let me explain, when someone has been detained under Section 3 of the Mental Health Act they become eligible for Section 117 aftercare once they are released from hospital as long as their care needs remain.

In my case I was eligible for Section 117 aftercare, I am no longer on any section that detains me or takes away my liberty, but the aftercare has enabled me to leave hospital and live in the least restrictive environment with the support I have needed, I guess its similar to the care in the community concept and its less expensive. Now over the last few years that care has changed and reduced which is a positive sign of me understanding my D.I.D and also regaining some of the skills I lost as a result of being institutionalised by the hospital admissions. It is also as a result of my family agreeing to help me in times of crisis instead of me having to rely on individuals I didn’t really know.

Now I currently have 2 great PA’s, they are people my family and I chose who have had training in Dissociative disorders and who really empower me, support me and help me to live as best we can in the community. Now not everyone with D.I.D needs this kind of help, but I do and that is I guess partly down to  my dissociative identity disorder and partly the fact my childhood didn’t allow me to learn the life skills that others take for granted.

But my care co-ordinator is pushing for cuts, cuts in funding and services, he would like me to reduce even further the level of support we currently have, now I have given them over a 50% reduction in my care provision without any requests from them, when I have felt we could mange with less we have been the first to offer the reduction and of course the cost saving. But for the first time the care co-ordinator is suggesting more cuts and he seems to think that therapy will bring this about in super quick time. I only wish it could, but I am realising what I can and can’t do, the skills I have and  those I lack. Now I know people will think well just learn those skills, but it really isn’t that easy, many of these are linked to thinking patterns and thought processes that I have lived with and perhaps under for over 40 years. It’s not so simple to just learn, if it was don’t you think I would have done by now.

I lack skills in lots of areas, and sometimes its hard for people to comprehend, they see me as a mother and therefore well I must have done x,y and z, but the reality is my children’s upbringing is mostly not down to me their mother, but the fact that certain people have been so instrumental in helping them to develop and grow into the well-adjusted adults they are today. Their Dad, their Grandpa and Nanna have all helped them become who they are, to have a normal child hood, and to thankfully learn the skills that I their mother lack.

Now without my PA’s I would flounder and be lost, I’d go backwards and would soon end up back in the spiral of the revolving door of mental health admissions and crisis after crisis. I really don’t want that, nor do I want to cost anyone more than I have too, but my Care co-ordinator seems to think that therapy will be this panacea of solutions and be able to move me forwards at a rate of knots. I know he will ask how is therapy going, and I will say its going well, because in my opinion it is, just it won’t be getting him what he wants… he isn’t really bothered about me learning internal dialogue, or feelings. He isn’t bothered about me having more awareness of  D.I.D or of myself in fact all he wants is for me to be needing less care, less support and at a super quick time.

Truth be known I feel trapped, trapped between wanting to please him which is a default position and wanting to know my alters, understanding the parts of me and learning to work together with them instead of conflicting with each other. I fear going backwards and I fear being misunderstood and judged which happened so much in my childhood and into my adulthood. People assume that when you are abused as a child it ends as a child, but because my main abuser was my mother who I still had contact with until less than 8 years ago my abuse well the psychological and emotional abuse it carried on past my 40th birthday.

I have to change patterns of behaving, thinking and submitting formed over  40 years, not just a childhood. I have to stop telling myself I am stupid when I cry like  am now writing this and I have to learn that I have a value that isn’t about being abused, used or judged. I have to learn to trust people, trust them and know that I am safe for I live my life in this state of hyper-vigilance day in and day out.

Yes I can write a blog, but that doesn’t mean I don’t struggle or have issues, it doesn’t mean that I wasn’t awake till gone 3 am this morning, that I didn’t have a crisis moment at midnight yesterday when I felt one of my alters who emotions are of fear, dread and a low mood I’d place as being in the pit of depression. I want to feel her, and I want her to know its ok to be there she is after all a part of me, but that doesn’t mean its easy.

I am dreading seeing my care co-ordinator because he sees me as the adult we are, but he doesn’t see whats going on inside our head, how we feel or how we function. Because he doesn’t understand D.I.D he doesn’t comprehend the complexities of our life, he isn’t open to dialogue about it. He just wants a budget saving and to hell with the human cost to me, my system of  alters, my family or the impact on our progress long-term in both therapy and daily living.

Perhaps he needs to go on a course about D.I.D, or to spend a few days working with me, instead of one the PA’s maybe then he might understand what its like to be me. this mess of a multiple who suffers the impact of the abuse I endured far longer than many would have ever imagined.


3 thoughts on “Fearing my Care Coordinator

  1. Apologies for only just replying to this post 😦 Was it today you saw him? Am hoping it went better than expected.

    Your care coordinators lack of knowledge of D.I.D is common, as I’m sure you know but am guessing from reading this post that he’s not really choosing to educate himself much which is disappointing, to say the least.

    It’s horrible that financial “resources” are such a huge sticking point and it’s impossible to have to validate the progress that you’ve made against whichever perimeters are set by funders.

    Am thinking of you and hoping for all your sake that the meeting went better than expected.


    • Thank you for your comments, broken but being repaired, I saw my care coordinator today, it wasn’t too bad a meeting though I have been told that health need to cut £16million from their budgets and my care package will be reviewed in March. They are looking for savings, but we are going to ensure that an advocate is there to support us at the meeting. I am certain that section 117 aftercare isn’t designed to be subject to cuts unless care needs change, its a shame the managers of budgets in clinical commissioning groups don’t realise this fact yet.
      I appreciate your support, C x

      • Am pleased it went better than expected:) .

        Hope you’ve got access to a good advocate for next time, so maybe you’ll not feel under so much pressure.

        Hugs from us,

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