(Yet Another) NHS Battle

(Or: At Home – Day Sixty-Three)

Today has been one hell of a day.

My care co-ordinator called. The psychiatrist won’t review my case regarding Tier 4 care. And won’t see me until September. The complex needs team might get back to me at some point in the next ‘few weeks’. And there will then be a waiting list. So I’m not going to be seeing anybody for any form of therapeutic care for another months. At least.

I hand the phone to my partner, because I am holding back a complete breakdown there and then.

My partner and I are more or less threatened that, if I do not manage my care myself, there would be serious repercussions for my ongoing mental health care.

A lot of things then happen very quickly. I had to call ‘Mind’ for advice. I threatened sitting in the local psych hospital, or indeed my local A&E, until somebody saw me. Things got unpleasant.

HOWEVER: I have now got my partner officially put on my records as my advocate going forward, because it’s causing me extreme emotional distress to try and cope with my own care plan. I sent an absolute HOWLER of an email, which should have scared them shitless. I also have an appointment for next Wednesday, which is just hilarious – if you’re insistent enough, appointments MAGICALLY appear…

I cannot believe how impossible it is. I am constantly, CONSTANTLY battling the NHS, and I don’t have the energy for it. Not when I’m also trying very, very hard to simply survive with extremely serious mental health problems…

Anyway. I also had an incredibly helpful conversation with my partner last night. We’ve discussed all of the current pressing issues, and formed a lot of new ways to try and help get through things as they are. It’s overwhelmingly positive, and I do feel so lucky to have her – even when things are at their worst, I never stop loving her. Sometimes I feel like all of this is too hard to see the other side of, but she never fails to surprise me with her patience, and her faith.

I just wish I wasn’t so fucking tired.

Time

(Or: At Home – Day Fifty-Seven)

I’m losing time. Just little things, little bits, but I can feel it. It’s usually the harbinger of worse things to come, but I’m going to remain optimistic because why the fuck not. Maybe I’ll be okay. Just a few days of weirdness and I’ll return back to normal. My mental health re-stabilises and I become a fully-functional human.

Or, you know, a few weeks pass and I wind up back in acute inpatient.

NHS Incompetence Strikes Again

(Or: At Home – Day Fifty-Four)

After a day of my partner calling up various parts of the psychiatric services, and MIND charity, and a few other places, we discovered that the situation I’m in should definitely not exist and I’ve been fucked about. It’s nice to hear, as I was beginning to doubt myself. My partner called the team leader of the care co-ordinators, and long story short we know what’s going on:

The psychiatrist makes the call regarding funding, and that is the current issue. Apparently while I was in acute care, the psych in charge of my care deemed me a good candidate for inpatient care and funding. The next one I saw, after discharge, decided otherwise. So, I have to convince her that I’m a good candidate and it would help me. That ought to be fun.

I’m also going to ask to return to aripiprazole, and come off carbamazepine. Aripiprazole helped with the depression in addition to the mood stabilisation, and carbamazepine appears to be doing fuck all. I also intend to remain on quetiapine. I don’t think I’m in a stable enough place to risk fucking about with my primary mood stabiliser.

I am feeling truly, hilariously shit at the moment. The whole situation has left me feeling completely disillusioned and fucking miserable. I am, in person, very verbose and with a fabulous cut-glass British accent that makes most people (seem) to think I’m a whinging upper-middle-class white girl with very little wrong with me. On paper I look a fairly obvious candidate for help, but the moment I talk people listen to how I talk rather than what I’m actually fucking saying.

So fucking fed up it’s unreal.

My partner needs to go back to work, we can’t afford her being a 24/7 carer. I managed to self-harm with her in the same room as me. So when she eventually has to go, I’m going to be on my own, and I don’t know what I’m going to do.

As it is, my partner has a training course starting in September at the opposite side of London. This has many problems. One aspect is that, for travel purposes (and affordability, and safety) we are going to be staying with my parents. I have a very difficult relationship with my family, especially my mother, and this is so not a good thing. I also have group support sessions three times a week at my side of London, and I can’t really travel or be alone at the moment, and my mother has already said she’s not prepared to commute. I have no clue how to work around any of this. Other than fall on the perpetual mercy of friends, which makes me feel like a constant burden and general imposition on other people’s lives.

I’ve already noticed people pulling away from me. They don’t do it on purpose, but nobody wants to talk about their problems or their lives with me, because they don’t want to put any stress on me when I’m vulnerable/struggling. But to be honest, I just wish people would talk to me. About their problems, about their jobs, about how shit their lives are. Anything. Absolutely anything. I am so lonely, and feel constantly betrayed by the people I’m supposed to be able to trust professionally.

I fucking hate the mental health services in this country.

Me vs CMHT. It doesn’t go well.

And so I enter the epic battle of me vs the community mental health home treatment team.

Short version: I need a medication adjustment. I really, really, really need a medication adjustment. I have Type One Bipolar, am currently entering a manic episode, and I am on insufficient medication. I was placed on a new medication (carbamazepine) which was supposed to be tapered upwards every three/four days to a proper therapeutic dose; along with the general uselessness of the inpatient ward, they failed to do this. They drugged me with benzodiazepines instead, and hoped that would be sufficient.

Today, I phoned the home treatment team a grand total of eight times. My mother called another dozen or so.

I was told at 9am that I would be phoned back regarding seeing a doctor. This never happened.

I called back later. They said the same.

And again.

And again.

And again.

Now, I also had a very important psychiatric assessment for an inpatient programme for bpd and my comorbid eating disorder. The treatment team KNEW about this appointment, at 11am, so they would have to visit me AFTER 1pm. Did this message get passed on? No. No, it did not.

So, the home treatment team visit got indefinitely delayed. Eventually, at 6pm, somebody deigned to show up.

I never got any info about seeing a doctor, let alone (haha) actually seeing one, which I was told would happen today by the team who saw me yesterday.

THIS IS GETTING ABSURD. IF I DO NOT GET MEDICATION ALTERATIONS I WILL END UP INPATIENT AGAIN. THIS IS NOT OK. THIS IS MANY SEPARATE LEVELS OF NOT OK.

And, I got info from my care co-ordinator, on the down low, that the team may genuinely try and DISCHARGE ME TOMORROW. Which makes zero sense. Bear in mind, here, that I am under 24/7 guard from my partner and parents, who keep all sharps and medications in a safe so I can’t do myself damage.

Tomorrow, my mother and I are on the warpath. Formal complaint time. If I don’t see a doctor by the end of tomorrow, I swear to every god ever invented, I will destroy people.

Wish me luck.

Discharged. The Aftermath.

Over the last few days, I’ve posted up the documentation I have from my time on an NHS acute inpatient ward; I have now been discharged into the community, and am under the temporary care of the Home Treatment Team. They come daily to assess and check up on me, now I have been discharged.

I want to quickly go over the basics of the inpatient ward. They were grimly insufficient on every possible front. I left my time inpatient far, far worse than I went in.

  • My bulimia reached epic proportions. I did not keep down a single morsel of food for the ten days I spent there, and lost around a stone in that time. I am now trying to go through refeeding, and can stomach very little before experiencing spearing stomach pains and occasionally vomiting.
  • I was basically drugged up to the eyeballs on benzodiazepines for the duration. They, as a rule, do not discharge patients with benzos. So I essentially went cold turkey on them.
  • My mania (which has been mounting for several weeks) was not treated. I was sedated, but my medication was not properly addressed. I am now, a few days into home treatment, going sky-high mood-wise…
  • There was nothing whatsoever by way of therapy, occupational or otherwise, so basically all the patients milled around doing sod-all for the duration of their stays bar smoking.
  • I was not watched. I left hospital with horrific self-injuries which were not there when I started. Nobody seemed to notice.
  • I was able to access contraband pretty much whenever I fancied, barring – bizarrely – my phone charger, which was the only thing I didn’t retrieve. Pencils, pencil sharpener, deodorant, money, all the rest: I had whatever I wanted, and could do damage accordingly.
  • The staff were overworked.
  • The consultant was a blithering idiot who decided, completely without reason or explanation, that I had an alcohol problem. Definitely in his own world, that one.

So altogether, it would take a small army to force me back onto an acute inpatient ward, ever. Ever. It was a hellish, nightmarish experience which will haunt me for a very long time.

This is what constitutes acute mental health care in the UK. This is so grimly insufficient I cannot even begin to fathom it. There are people in ostensibly worse situations who don’t stand a hope in hell of getting well in any meaningful way, or for any meaningful time.

I now place my faith in the home treatment team, and my care co-ordinator, and hope they can do better…

Acute Inpatient Ward – Day Ten

I am definitely on the wrong combination of meds. I will be demanding to see a consultant psych at the earliest possible opportunity. I’m heading so manic I can see stars for fuck’s sake, I need an actual mood stabiliser.

Meanwhile, woman shrieks about God

I want to cry, really badly, but can’t.

I’m disconcertingly angry. I’m everything and nothing. I want to murder the fucking moronic fucking psych who got this wrong. But it’s fixable, which is what matters.

Carla* basically keeps stealing people’s clothes and washing them or occasionally binning them.

My mother should have been able to visit today but couldn’t, the loneliness is killing me and I don’t know how I’ll cope with longer term inpatient, I’m feeling very scared and very unhappy and yet I’m being released so I’m delighted about that. I don’t know what’s going on and I hate my partner passionately right now. She won’t understand.

Acute Inpatient Ward – Day Nine

You can’t make this shit up.

Just had Carla* knocking on my door, asking to come in. Apparently I am number fourteen, and therefore I am the girl who will open the door. Otherwise, we will age forever, I will be trapped here forever. She offered to give me something to remember this moment by, and I promised her (very honestly) that I would not forget. She asked if I remembered Uncle Charlie. Apparently this shows that I’m one of them and will age and die here forever.

Jesus.

We’ve also had a patient attack the staff, bloody nose and all. I binged on five fishfingers and enough potato to deck a horse, went to purge midway, the staff only noticed that I’d left my phone behind and that was probably a worry.

I’ve moved on to singing at the top of my lungs and hoping for the best.

See a world, beautiful and strange, spinning off somewhere…

I have had a hell of a day. My anxiety is now completely gone, of course: we have a pathway, and a plan, and I am being discharged on Friday. It is now Tuesday. Now to pass the boredom of the next few days!

*name changed for anonymity purposes