So I had a few things I wanted to talk about today before the noise from next door forced me out again.
- They closed my local mental hospital.
- I attended a meeting with the psychiatrist at the National Health Service on Thursday to complain.
- I have serious questions about mood stabilizers and pregnancy.
1. They closed the local mental hospital.
I have super mixed feelings about this because half of me is like “YESSS! NOW I DON’T NEED TO FEAR GOING THERE FOR EVALUATIONS AGAIN” but half of me is like “they did WHAAAAT???”
They have literally declared it unsafe, closed it and discharged anyone they can “into the community” (leaving the relatives that dobbed them in to look after them, oh that’s gonna go down so well). All in the same week. Anyone for whom it was a one-way trip has been transferred to other hospitals. Namely Leeds and Hull. These are not places I want to go if I lose my marbles because they are FAR AWAY and my husband wouldn’t be able to visit because he does not drive. I can’t believe they’re not going to, I don’t know, repair the building then re-open it again. That would make sense. But then, that would mean spending money on mental health services, and as EVERYBODY is ONLY too keen to tell me over and over, “you can just get some pills and be totally fine and normal again like everyone else, so what are you complaining about?” This has of course flooded the community mental health team so now I can’t be bounced to them for any free assistance with my crazy shit.
Here’s an interesting article (not about the closure) about the treatment of bipolar disorder in the UK in 2001 that I think really sums up the state of mental health services in this country. It’s 14 years after this article was written and nothing’s changed: Article here
And because there are no private mental hospitals in York either, because private healthcare in this country is under-developed, I can’t even go private if I get sectioned (admitted as an inpatient). This will be important when we talk about point 3.
So this leads nicely onto my next thing:
2. I went for a meeting on Thursday with the psychiatrist who misdiagnosed me. I made my complaint. My husband accompanied me to make sure I didn’t get fobbed off. He (the psych, not my husband) apologised profusely, said meeting me now when I was not the way I’d been when he’d seen me, he could categorically say I didn’t have a personality disorder and that trauma SHOULD have been considered. Then he went on to say that because of the dire state of mental health services in York (due to closure of above hospital) I would not be able to access the level of therapy that I needed for the complexity of my case, so basically I can pay for treatment myself or I can not get any help.
He said that the psychosis team were not remotely going to be able to help me (after being with them since April) and that there were no specialist services in York for trauma-related stuff, or in Leeds, or anywhere outside London (about 180 miles away). So basically, because I *have* paid for my own psychiatry and because I am paying for my psychotherapy (which I have been having weekly for the last 4 weeks, next one tomorrow), and because I am paying for my EMDR counselling (which is on hold until near the end of October), I can keep doing this. Mmm… okay but where’s the money coming from when I’m not working?
The trouble is, it’s not that they don’t *want* to help, it’s that they don’t have the right trained staff. I need to see someone who is at least a psychologist or psychotherapist, not a counsellor, and all you can get for free on the NHS is counselling for less complex (but still disabling) problems such as anxiety and depression. There is so much of this available that the waiting time is a paltry 6 months, whereas I would be looking at waiting for at least three years to see a psychologist: I don’t know if you have this distinction in the USA, but in the UK anyone with a certificate can be a counsellor, and they generally haven’t studied counselling to full degree level (there are exceptions to this but this is the minimum), let alone a psychology degree (and psychologists have an MA and usually a doctorate in a psychology (such as clinical or child psychology) to be registered as a clinical psychologist as opposed to a research psychologist, and psychologists get no funding from the NHS to train because that’s how little they’re valued, whereas psychiatrists are doctors who then go on to study psychiatry which I think is the same as in the USA. LUCKILY there are a couple of private psychologists and psychotherapists in York (where there are no psychiatrists – I had to do a videoconference to get my diagnosis and letter and therapy/medication recommendations) and I got a good appointment time with my psychotherapist. But I’m still left paying £90 a week for therapy which I just can’t afford.
3. The big bipolar meds and pregnancy question: I want to get pregnant before I’m 30. Don’t ask me why, I can’t explain it because it’s very longwinded and probably only makes sense to me. But I want it to happen. And now I’m on Seroquel, I’ve been looking into whether this will be possible.
Here’s what the internet told me:
a) Of all the mood stabilizers, Seroquel is considered by the FDA and NHS to be the “safest” for pregnancy.
b) Many people have anecdotal evidence that they got pregnant and gave birth, and either took it at the beginning, end or throughout their pregnancy. Apparently there have only been 8 studies done on atypical antipsychotics and pregnancy (in every single one, the participants were on any antipsychotic and some of the participants were on Seroquel), and these have all shown no birth defects and no increased risk of miscarriage or chromosomal disorder. There was a slight delay in the learning of children who were born to mothers on high doses of atypical antipsychotics but by 18 months these children were indistinguishable from their peers born to mothers not on any medication during pregnancy. There has been some reports of withdrawal symptoms in babies whose mother took seroquel during the third trimester.
Here’s what my heart tells me:
a) Pregnancy and post partum is one of the most triggering times for people with bipolar disorder. I don’t want to put my unborn child at risk by stopping medication.
b) I do not want to put my unborn child at risk by continuing to take medication that may cause the baby any harm.
c) That’s for a given value of harm. I am on 25mg of seroquel. It doesn’t flatten my affect by it dulls my shit down enough that I am able to generally keep it together. People on the internet were on 250-600mg of seroquel during pregnancy and they were fine and had healthy babies without any issues. The main concern is lack of information because for the longest time women who had mood disorders were extremely discouraged from getting pregnant to stop them spreading their crazy genes, and what better way to appeal to an emotional woman’s emotions than to lay it on her that if she gets pregnant, she’ll end up with a defective baby that she has to care for all of the child’s life or institutionalize (the two options at the time)? It would put the “genetically inferior” people off of reproducing, right? So I don’t know how much of this stuff is carried over from that and how much of it is “if you have paracetamol, AND allergy tablets, AND drink the “permissible” glass of wine (don’t even get me started on how that advice to people in my country pisses me off) AND smoke AND take antacids, THEN your baby will have two heads.” Because when paracetamol and benadryl have the same warning as my seroquel about pregnancy, it doesn’t make me take notice of it as much on the seroquel, especially when I know someone who was on tramadol and co-codamol and zopiclone and citalopram and amitryptylene and actively got pregnant (and some of those are proven to be FAR worse during pregnancy than seroquel, which hasn’t been shown repeatably to have any problems aside from in the third trimester), who refused to even try and taper off them and has produced an apparently healthy child. And I think, can my tiny amount of seroquel make THAT much of a difference compared to all the drugs and booze that many pregnant women ingest? Will my baby really be inferior if I continue my medication? Surely they’d be more at risk from me getting sectioned and them being born in a psychiatric hospital (like I was, I found out recently). And as a result of that, them never getting to meet their father until me and baby were both let out (or worse, knowing my luck, social services might just snatch them away once the umbilical cord’s cut). I know now why I didn’t bond with my dad. It’s because I spent the first six months of my life in a mental hospital, and that’s why my mother didn’t breastfeed me (meds, that is). No wonder I’m terrified of psych hospitals. No wonder she was. But surely even after I was out, even if they let me keep my baby, the high dose of whatever they’d put me on and the side effects would leave me with no time, energy or affect to shower my littlepon with affection? They tend to put you on “typical” antipsychotics such as haloperidol if you’re pregnant, not because these are remotely safer for you or the baby, but because there’s been clinical trials done on pregnant women with these meds and they know what will be wrong with your baby when it comes out.
So I have a million questions as you can see about getting pregnant, and this is particularly important because my aforementioned local mental hospital’s been completely closed (its function has joined the choir eternal, if you will) and that means if I go manic or depressed whilst pregnant (which is more likely anyway, and even MORE likely if I come off the meds), I would get shipped to Leeds or Hull and my husband wouldn’t be able to come and visit me, and the absolute last thing I want is to be ripped from my life, forced to give birth scared and alone on a plethora of drugs in a psychiatric hospital where I may or may not be allowed to keep the baby. So if staying on mood stabilisers isn’t an excessive risk to the baby I’d rather take them and be able to be there, and enable my husband to be there, for my baby’s first few months of life. This stands whenever I get pregnant not just right now.
Also apparently for the ones that are actually bad for your baby they make you have the contraceptive pill?? Is that true? I would never take it but it wasn’t suggested, offered or mentioned so am I in the clear??
Does anyone have experience of pregnancy on bipolar meds (or ideally specifically seroquel but if you don’t mind telling me what you were on I’d consider changing drug if there’s a better one out there). Most of what I can find that’s on the net is from psychiatrists and they don’t have to live with the consequences, but they seem to go with seroquel as a first choice for pregnant bipolar women, is this anyone’s experience??