So we have a recovery college in Leicester. It has a few full time mental health staff and runs courses that might help improve mental health recovery, build confidence and get you to meet other folk in your situation. It's been running for about 3 years. My friend has been and my GP suggested it. I called them and signed up and have done a few short courses, 2 hours long, just to get my toes wet. I did creative writing and poetry, and also did a stint of mindfullness.
However yesterday I started the "Living with bipolar" course. Its a few hours one afternoon a week, over 5 weeks, and covers basic diagnosis, pharmacology, living strategies and relapse prevention. It was great to sit with other "polar bears" as one lady called them and listen to some of their experience, symptoms and hope. But the thing that really grabbed me was a single slide entitled, "NICE guidance for bipolar disorder". Although I am reasonably bright, I can also be pretty dumb and trustworthy when it comes to services. I fall into the trap of thinking that they have my best interests at heart and are doing everything in their power to help me get well. I am naive I know. Sorry.
So it shows briefly on the magic slide, the recommended treatment for people like me. Now don't get me wrong I have had some intervention but what I feel I actually need, I have not had. I did a CBT course in understanding depression 6 years ago. I did self esteem CBT 6 years ago. I asked to go on the bipolar course 6 years ago. Nothing ever transpired. I asked if I could have psychotherapy. "You are currently too unstable and the waiting list is 2 years." They wouldn't even put me on the waiting list. I wanted to to get some help for my anxiety. Your anxiety isn't debilitating enough to warrant treatment, and even if you did, the waiting list is 2 years. I'm meant to be linked into support groups. I was told not to go as the local bipolar group wouldn't be helpful for me. I am blessed with family intervention, but this is about symptom management and helping my husband not to have a freak out super meltdown when things go wrong. It's not about me getting some permanent recovery.
So yesterday I came home and read the guidance in full. It also says I should have a lead care co-ordinator overseeing my care and reviewing my case regularly. I should have an up to date care plan and I should have an up to date risk assessment that is inclusive of my families input. I should have an emergency pre-planning document so that if I am so unwell I cannot decide on my care, the plan is already agreed and signed.
What I have realised today is that I am a patient in the void. I am not in crisis and am deemed "Well enough" not to be on the CPA, therefore, I don't have a CPN. I am too ill to be in primary care or supported psychologically through primary care agencies. I am not well enough to work. If I work my level of stress and fatigue rocket at such a rate I get ill with a matter of weeks. I also struggle with psychological issues of intrusive thoughts and as I haven't dealt with certain issues in my life, I also end up emotionally shredded when bullied or in conflict or unsupported. However, I'm pretty sure when ESA actually get back to me about my work capability test, they'll say I'm fit enough to do a 40 hour week (Probably cleaning where the intrusive mind of mine will want to constantly make me drink bleach). No offence cleaners, its the chemicals that are my issue!
So I called my team and said, "I want a review. Who is my care co-ordinator?". After some minutes, it was decided the new locum psychiatrist would probably be the guilty party. Well that's a bit pants as he's crap, so I tell you what, these are my issues, this is what I want sorted and I want someone to help me get a solution and a plan. "OK, we'll see if we can get a review organised for you as soon as possible. Someone will call you back."
In the mean time, I will continue to flail about in the void, trying my damnedest not to drown or relapse, and I will push on with my recovery, doing most of the work myself in the hope that if nothing else transpires at least I am trying to do something to make me better.