When your care plan doesn’t reflect you and your needs

There are times when I feel Mental Health professionals just do not understand Dissociative Identity Disorder and what it’s like to live with it. There are times when I feel that I am judged by my time in hospital and it appears assumptions rather than facts about me rule the day. Unfortunately the arrival of my much awaited care plan signalled it was one of those times. It’s clear from reading the document which outlines my care needs, the interventions put in place and potential signs of relapse, people still need educating about D.I.D.

I knew it was unlikely to be positive when the boxes which stated I and my carer or significant other had been involved in developing the plan were marked ‘ Yes’ . This is the first time I have seen a care plan in over a year and neither I nor my family have been consulted about it at all. More frustratingly I guess is the fact we have only received a copy because we have asked repeatedly if one still existed.

It seemed strange to see a note attached to the plan which my care coordinator had written saying ‘we can discuss any amendments on my next visit’, amendments I thought, I want to re write the whole darn thing! Yes it’s that bad really, which is sad given I’ve been with this particular team for over 8 years and they know about my diagnosis. It’s even more bewildering given that some though perhaps not my current care coordinator have been given specific training on Dissociative disorders.

I’m more conscious though of the glaring misconceptions that stare at out at me, the plan has a list of skills and support they expect my PA’s to provide none of which mention dealing with my alters; the many parts of me. The person who employs my PA’s hasn’t been consulted about these either so was rather taken aback when I showed them the care plan. My PA’s are now meant to be specialist mental health care providers apparently, of course they aren’t, because to have this would cost far more than the Local Authority will fund. But my PA’s do provide valuable help, support and assistance on a day to day basis and they help deal with and interact with the many parts of me. That’s a skill in itself and one that needs to be recognised…but it is not even mentioned in the plan.

My community mental health team seem to think I can just stop switching, on command! The plan states ‘carol to undertake independent activities where she is required to remain in an adult state’. I liked the word ‘required’ it seems so out of sync with what it is like living with D.I.D, after all I can try and manage my time, juggle the needs of the various parts of me but I can’t just switch off the switching. Yes I try at times to stay focused, it takes a great deal of effort, I know I still switch from one adult me to another and at times will suddenly descend into a child part. I’m working hard to work in cooperation, watch and observe as little parts of me take control of this body we share, but I have no ability to ‘remain’ in an adult state at command. It’s simply not yet a feasible option.

I’m quite good at covering it up and people who don’t know me well may not even notice the switches that take place, but that’s the same for most people I know with D.I.D. The majority of people I interact with don’t notice the internal struggles that go on constantly as I try and remain at least aware of what my parts are doing. But I’m still losing time, I’m still having periods each day when I wonder what the hell I have been doing. I have to balance my time and my days to try and give myself a fighting chance each day and yet they expect me to just on command remain adult. I wanted to laugh because they refer to the time I don’t have care and they assume I stay adult me in this time. This is more than half my week and yet they assume I can just be an adult! I think they might be surprised if they saw me at these times, because their assumptions are so far of reality it’s quite sad.

Take for instance the other day I had no PA’s I watched cartoons well my little me’s did, and then we had breakfast which was chocolate. (I observed but had no control). Then I lost time, apparently I snoozed and had a mid morning nap before even more cartoons. The rest of the day I switched from one part to another and back again, some were adult parts, some teens and some little parts. I think I failed if they expect me to ‘remain adult’ oh well I live with D.I.D., the professionals clearly don’t understand it.

The plan goes on to talk about how my daughter and I are meant to monitor and report back any risky behaviours and it says ‘ increase periods of stabilisation and reduce the risks of self harm or harm to others’ I have never harmed others, the only person I ever hurt was myself. I find this assumption so offensive, just because I have self harmed, just because I have been in secure hospital settings does not mean I have ever been a risk to others! How dare these people treat me as if I maybe a risk. I’m going to be asking for their proof that I have ever been a risk to others because I know I haven’t and I want the comment removed.

The plan outlines my signs of relapse, well given the signs they suggest are indicative of a relapse I should be in a hospital right now. Well dissociating on a daily basis is deemed a sign of relapse and having flashbacks is too. I’m doomed if these stay on my list, I have D.I.D for goodness sake of course I will dissociate! I also want to know which individual never has arguments with their family, because if I do it’s a sign of relapse. Yes seriously the signs are so silly even my family are dumbfounded by them.

Finally there is that solutions box to relapse, it’s great even though I have no PRN medication it’s listed as a technique to use. But worst of all 5 years after my last hospital admission the threat of readmission still remains, the plan states ‘if risks continue to escalate to a level above carols ability to cope in the community consider hospital admission’ why? Surely there has to be other solutions first, maybe extra therapy. They assume increased dissociating is a risk, with such signs in the plan I can’t win, if relapse and risk are dissociating, if it’s having arguments with my family how can I win. I have a dissociative disorder of course I will dissociate and when I’m stressed or have increased anxiety I will dissociate more frequently. That doesn’t mean I need to be locked away in a hospital. It means I need help maybe support to deal with the stress and the anxiety, why do mental health professionals still look at the problem they can see and not the cause.

My plan is an absolute joke, it’s so poor it’s insulting and as I maybe changing teams soon it needs more than ever to be right. I don’t need a battle right now I want them to just get it right, to understand me and my D.I.D, is that too much to ask?

Copyright DID Dispatches 2014