Repost from my old blog from May 2015: This reflects my experiences and opinions at the time of writing and is unedited (except to move links/pictures).
Angst warning: I am ANNOYED. I thought I’d take this opportunity to share with you my bipolar disorder journey so far, because the road to recovery in the UK is paved with frustration that we can’t just pay for fucking treatment like everywhere else does, but the free stuff is hopelessly bureaucratic. I am well aware that I haven’t even scratched the surface of the incompetence of the NHS mental health services but I’m sure I will encounter more at some point.
A few weeks ago, I called the doctor and finally handed myself in. I feel like I’ve been living at large for ever, and I confessed to all the stuff I’ve done. I won’t horrify you with the details, but let’s just say if I’d gone into a police station and told them the same stuff, I would have been arrested and awaiting trial.
My doctor made a referral straight away and (this probably sounds long and slow to Americans but believe me this is the fastest NHS referral in the history of referrals) two weeks later I got a letter from them with an appointment for 28th April, two weeks ahead. That’s right, four weeks total wait time from referral to appointment. Amazing.
UPDATE, 29th April:
Yesterday, I had to go for the appointment. It was one of the most terrifying experiences of my life. They do all the psychiatric stuff in the actual psychiatric hospital, which is a whole separate building to the rest of York hospital. As the appointment loomed, my anxiety and psychosis combined and I was CERTAIN that this was going to be the end of the long delusion that I’ve been living in since I was 18, that I was going to wake up in the mental hospital in Luton and that I would never see my husband or my bunnies ever again. Because none of this ever happened. It’s a too-good-to-be-true-I-don’t-deserve-my-life delusion of reality that I can’t quite shake, even after 10 years. So yesterday morning, when I dropped my other half off at work, I was crying and shaking and scared that he would stop existing. I came home to park my car and stroked my bunnies and said goodbye to them, because I wasn’t going to see them again either. I got my bike and tried to get to the hospital, although I was struggling to move at anything approaching normal speed, and time was doing strange things so it took me much longer to get there than it should. I parked my bike in the public car park and walked up to the building. It’s a big Victorian house, with the stupidly high ceilings and big windows to throw yourself out of. And the entrance was round the side. I was stressing so much that I didn’t pay attention to where I was going so got lost on the way back out and took half an hour to find my bike again.
I went to the main reception. Obviously being two minutes late for an appointment was not late enough, but the receptionist helped with that by ignoring me to continue a conversation with someone else inside reception about someone who she didn’t like who had annoyed her in some way. I waited. Eventually she told me where I needed to go. I went up the stairs and had to press a buzzer. I was told to wait. I waited. I’d taken one of my cuddly unicorns with me for morale support as I didn’t want to subject a bunny to that amount of stress, so while I was waiting, I opened the bag and put my hand in, and stroked the nose of my unicorn. Misty (the unicorn) did a stellar job. I didn’t get her out because I didn’t want anyone to know she was there. Instead, I took my hand out and zipped the bag up when I got called. So far, if I’d wanted to just walk out, I could have done. Now, the woman who collected me took me through a coded locked door and into another room, also locked. I was even more worried. What if they didn’t let me back out again. These worries probably seem unfounded to you but they are very serious fears to me.
She tried to take a history. Unfortunately, I was so stressed that my brain was not focussing properly and instead was producing the wrong things to tell her. I think I got a lot of it out, but there were some really important things that didn’t get touched upon. Also she only had an hour to get it all down and ended with “obviously there’s a lot more than that but I think I’ve got the basics.” I didn’t know what her job was but later it turned out she’s an admin assistant who asks these questions to try and get you to the right team. Could have done with knowing that before we started, would have saved me a lot of anxiety and psychosis.
Afterwards, from all the panicking I’d been doing, I was so exhausted I had to go home and lie down for the rest of the day. I’d been supposed to start my new job that day but I got my husband to phone in for me because I couldn’t work out how to make a cup of tea let alone anything else.
I get a phone call on Thursday to find out my diagnosis.
UPDATE: Thursday 30th April:
I’ve been referred to the Early Intervention Team because I’m under 35 and getting my first diagnosis with bipolar with psychosis. If I didn’t have psychosis I think they would have referred me somewhere else, but nobody seems sure where or if there even is a somewhere else.
Also I got news last night that my dad has died, and I had to wait until this morning to find out what had happened.
UPDATE: Tuesday 19th May:
So it’s taken them this long to see me at the Early Intervention Team and I don’t think they are the right people after all that. Why they couldn’t have found the right team instead of just making appointments and wasting my time, I don’t know. Also they should have a tape recorder at the first assessment if they’re going to ask the same questions because the hour today was an utter waste of breath.
So I got diagnosed 2 and a half weeks ago with bipolar. That’s it. No type. No meds. Nothing.
I was referred to the Early Intervention Team for people experiencing psychosis. When I was told (I have no choice over where they send me) I thought this would be helpful because their web page said they do bipolar, so they must be the place to help me out, right?? Wrong! While they’re listed as a service to help people with Bipolar, it turns out they are NOT interested in the mood symptoms AT ALL and actually only care about the psychosis. Despite the fact they won’t give me back my mood chart. I haven’t got any psychosis at the moment so I didn’t know what to say to answer their questions. Instead of letting me pause to think and remember things or word them, they kept repeating questions over and over.
And they have no interest in helping me with any of the mood symptoms.
As I’m sure anyone with bipolar knows, the psychosis (in those people who even get it) is only part of the bigger picture. I feel like they’re focussing on one tiny cloud in the landscape when I need help with the tree, the house, the horse and cart (I’ve added the picture below that I’m talking about as my bigger picture – it’s on my wall but it’s a good analogy). Mostly, I need to get my horse and cart over the water, but the water level keeps changing, leaving me stranded and unable to swim.
Mostly, I need help with my mood instability and unpredictability. The psychosis generally gets ignored from one day to the next and actually went away 2 weeks ago.
They’re not interested in assessing past trauma (you know, for the PTSD I may or may not still be suffering from), they’re not interested in helping me stabilise my moods so I can hold down a job. And despite the fact that everyone in mental health services keeps mentioning psychiatrists, I haven’t even SEEN one yet and don’t think I’m going to. Today’s meeting was with an occupational therapist and a nurse. I’m not dismissing their professions but this is a very flawed system.
Who are these people and why don’t I have any mood stabilisers yet? I mean, how much longer am I going to be stuck here, being booted between teams because bipolar is so complex and they neither have a bipolar specific nor mood disorders specific team. Surely a psychiatrist would be the logical choice? ARRRRRGH!!! I am so frustrated with this. And surely the whole reason waiting lists are so long is because some idiot in the Bureaucracy department keeps moving patients into the wrong teams!
I did find out at the weekend from a trans friend that there are a handful of private psychiatrists in the UK. I want to just see a private psychiatrist and get myself sorted out, but there are not many of these in the UK due to the NHS, and the nearest one is in Nottingham and that’s an unreasonable drive for appointments. That’s not even to see a psychiatrist who specialises in mood disorders – the nearest one of those is in London (I think) and I don’t know if they even see patients. Yet again there is a rift between where the NHS ends and where private medicine (or insurance) starts in this country.