Finally, after many years and I mean years of fighting the system I actually have something positive happening in regards to my treatment. Its taken my wife and I a long time, butting our heads against the wall of a system that has suffered cuts, incompetence at times and frankly a failure in its duty of care. I know those last two are harsh and this is the NHS, but seriously, anyone who is currently dealing with this system will at least have one horror story I can tell you.
Anyway, to the point, the good point, after all the fighting to get things done, things are finally moving in the right direction and all it took in the end was two key people who actually listened. My medication is now being changed, no more lithium, as I mentioned before, the stuff was killing me, now I'm being taken off it and put on depakote which although isn't perfect, isn't going to kill me. That's the start, the other far more amazing outcome is that I am now, officially under the mental health community care team. So, from this point on, we have additional support, no more confusion about who is supposed to be seeing me and no more of the who is in charge of my overall care.
How on earth did all this come about?
My last crisis moment, the one I mentioned in previous blog, it led to this whole situation because things just got beyond a joke. But it was two moments in this that stand out from all others, the first was a crisis nurse who had been transferred to my local team to help cover. This nurse was amazing, she was shocked at the treatment I have endured and could not understand why things were as they were. She even used the word I have associated with the last 10 years, being in limbo, not knowing what is what. So she set out a plan of action, here at my own home. She wanted me under the community mental health team, she wanted a medication review and most of all she wanted clarification of my actual treatment. I'll admit, I thought, 'yeah heard all this before' and completely dismissed her at the time. But this amazing woman, within days had arranged for me to see the psych for the medication review, started the ball rolling to get me into the community mental health team and before she had to go back to her previous post, reassured me that things would get done.
Now you may remember me having a rant about visits not happening when I was in crisis, this was the case after she finished. For the whole six week period I was lucky if I got a phone call and I they even lied about trying to contact us. The problem with this was that my application to the team was now in the hands of the same idiots that sadly have let me down before. Heart sunk, old fears returned, but something else came along to help me with that, it came in the form of who was doing my medication review.
I was lucky enough, extremely lucky actually to have a professor of psychiatry review me medication. This man had been brought out of retirement in order to help the current team as they were very much understaffed. Little note on that under staffed part, its amazing how they like to remind you of that fact when you feel suicidal and thinking you are a burden to people, just think about that for a moment, you'll understand why both my wife and I have had the urge to murder them. Back to point though, the professor, this man surprised me, remember at this point I had given up all hope, I wanted to die, didn't see any point in going on. This man walked in, took us to a private room and without the aid of a computer talked to us. Now that part is important, as every appointment I have the psych will pull up my file and spend two minutes flicking over it. He didn't need to, he'd already prepped for the meeting and read my notes fully and was in effect just as shocked as we were at things. This is how I found out that my psoriasis that was caused directly by my lithium, should have been stopped there and then, not increased time and time again. I will say he wasn't perfect, he did give me a medication that once I read the leaflet and asked questions proved to be dangerous to me due to my family history of multiple conditions.
Anyway, time ticked on, crisis team kept telling me they were having issues with getting me the help from community mental health and that it was being blocked by a consultant for some reason. Turned out that was utter nonsense as when i had my last appointment, the one where I am officially coming off Lithium with the wonderful professor he politely informed me that the team should be involved as I am a secondary care patient and he is completely at a loss why they would not be involved. Just days after this appointment I get a phone call from the crisis team, which were supposed to do the last home visit, to cancel that visit, discharge me but also announce, I am now under the community mental health team. I can't be sure, but the sheer timing to me suggests there was a question raised and nobody could answer and boom, I'm in.
So right now, things are looking good, I'm also referred for a more advanced form of CBT to help me cope with recent developments in my condition. Being honest I'm going to need something as one other great thing about the professor, he's honest. He told me, without any shadow of a doubt, this new med might not work and I may have to face life dealing with my condition in more challenging ways. I know I've mentioned a fair bit of this in a previous blog, but this is more an update. I have some hope, someone finally grabbed my hand and pull me up out of the waters of the limbo I was in. Lets just hope it doesn't fall apart due to the stupidity and I seriously mean that, I don't care if it is the NHS, there has been so many mistakes I'm allowed to have a rant about it!
No comments:
Post a Comment