Wednesday 11 March 2015

Why the NHS can drive you mad

I have just returned from my G.P's surgery.  It is the third wednesday in a row I have been there for a 7.30am appointment, and this time, thankfully, the doctor is ready and waiting to see me.

The doctor welcomes me into the consulting room.  "Have a seat," she says, gesturing to two metal-framed chairs adjacent to her desk.  I fold my coat and place it into the chair with wooden arms that is closest to the desk. I take a seat in the other chair, breathe out, and try to relax.  I'm aware of a slight tingle of trepidation in my legs.  This G.P. is the fifth one I have seen in as many appointments since my original doctor, the senior partner at the practice, retired.  He is a talented whistler of Scottish folk songs, and I visit him fortnightly to help him learn them on the viola.  I don't blame him for wanting to retire.

It can be quite emotionally exhausting to have to explain oneself and ones history again and again to another unfamiliar face.  I have bipolar disorder.  I was diagnosed in 2008 whilst experiencing a manic episode, and sectioned under the mental health act for a month.  I was sectioned again in 2012, after a well-intentioned but rash attempt to live without taking any medication. Apart from this brief blip I have been largely successful in managing my ups and downs.  I am however totally reliant on medical professionals to trust my word and judgement and let me have the medications which work for me.

Today I have a specific outcome I would like to achieve from this meeting.  The doctor looks around from her computer screen.
"Have a seat," she says again, gesturing to the other chair.  I get up, put my coat in the chair I'd settled into, and sit down in the other chair.  It's clear who is in charge here.

In January this year I noticed I was getting towards the end of a pack of Lorazepam.  Lorazepam is a muscle-relaxant, used to treat anxiety.  If I take it at night during stressful circumstances, I wake up feeling refreshed, with a calm awareness and a sense of peace.  Lorazepam a highly addictive member of the benzo-diazepine family.   It had been prescribed for me for occasional use by my psychiatrist last summer.

My psychiatrist sees me for an hour's consultation once a year, and I have known him since 2008.  He is a patron of an orchestra which I direct, and I see him and his wife at concerts occasionally.  Despite various job changes and trust restructurings he has kept me on as a patient.  I feel secure and listened to in his presence, I don't have to justify myself to him.

When I last saw the psychiatrist, I explained that there are times when the hypnotic drug Zopiclone, which I take most nights, is not sufficient to prevent episodes of disturbed sleep.  I wake up at two or three in the morning, tense, sweating, with veins pounding in my head and my legs, unable to get back to sleep.  A few nights in a row of this creates a vicious cycle.  Anxiety about not being able to sleep, followed by not sleeping, followed by more anxiety and fight-or-flight responses, followed eventually by loss of judgement, hypomania, delusions, inappropriate behaviour, and finally being locked up.  From the first disturbed night to sectioning takes me about 5 weeks.  It's happened twice and I don't want it to happen again.  So it's absolutely crucial for me to monitor periods of sleeplessness and deal with them effectively.  The psychriatist approved of my using Lorazepam in these kinds of emergencies, wrote a prescription for 28 pills, and wrote to my G.P. to that effect.

Fast-forward 8 months to January, and there are only 7 of those pills still left in the pack.  I order a repeat prescription online.  It takes 5 days for the drugs to arrive in the pharmacy, so I need to prepare well in advance.  A week later I call in.  There is a note refusing to issue the prescription and requesting me to book an appointment with my G.P.  The surgery is closed now and I forget about it for another week.  When I ring again, I'm told that my doctor, who I've been assigned, but never met, wants to see me but she is away for a fortnight.  I explain that I just want a repeat prescription for some Lorazepam, which was issued in agreement with my psychiatrist, and ask to see another doctor. They organise a telephone consultation, and a weary-sounding doctor calls later that afternoon and asks me what I'd like.  He prescribes me 7 more Lorazepams to tide me over until I can see 'my' G.P.  A succession of cancelled-at-the-last-minute appointments later and I'm ready to plead my case.

"But why do you want Lorazepam?  Lorazepam isn't prescribed for sleep, it's a muscle-relaxant."
"Yes I realise, it's just that I discussed it with my psychiatrist and"
"If you need to sleep you should be taking a hypnotic, like Zopiclone or something."
"Yes, I do. I take half of one of the small ones, the 3.75mg ones, most nights."

This is written in the letter from my psychiatrist and one of my regular repeat prescriptions.

"Well that's a sub-theraputic dose, so any effect you are getting is only due to the placebo effect."

I know about placebos.  If I could live without taking any medication I would.  I drink camomile tea and eat oily fish.  I meditate, I do qigong and yoga.  If there was a homeopathic remedy for neutralising mania, believe me I'd be first in the queue to try it.  I'm also familiar with that metallic taste you get in your mouth when you've taken half a sleeping pill, and the feeling of the muscles in your back relaxing involuntarily a few minutes before you nod off.  It's not the placebo effect.  In any case, this isn't what I'm here to discuss.

"How many times a week do you take Lorazepam?"
"It's not really that simple, I can't predict" I begin.
"But you can, can't you?" she interrupts again.  I'm beginning to feel like a young offender with a drug problem.  I pause before continuing.
"I can't predict when these bouts of sleeplessness are going to occur.  I need to have something stronger than zopiclone on standby in the event that I'm going to need it."

She looks at me directly in the eye for a few seconds.  I return her gaze.

"Tell me honestly, how often do you take Lorazepam?"

I'm an educated middle-class professional, and this doctor, who I've only just met, doesn't seem to believe what I'm saying.  Bipolar sufferers are prone to outbursts of emotion.  I am lucky that I am quite emotionally self-aware and good at concealing my feelings.  I wonder briefly what the outcome would be if I were from a different socio-economic group with a shorter temper.

"Just as I said.  I had 28 pills prescribed for me back in June, and I've only got a handful left."
"So lets see, that's about seven every three months isn't it?   And you had seven prescribed last month.  Well, okay, I'm happy with that.  Lorazepam is your little comfort blanket isn't it?  There's a psychological need for you to have it there, and just having it there is sufficient to deal with your anxiety."

I'm not in a position to argue.  The occasional use of this drug has kept me sane and on a relatively even keel for the last year, and this doctor seems to be coming round to the idea of letting me have some of it.

"I suppose so." I concede.  It's the best I'm going to get today.

It's tempting to think of bipolar as a predictable illness, with regular swings, from gushing manias to crushing depressions.  But the reality is far more complex than that.  I had an anxiety attack a few weeks ago which was brought on by going into a take-away restaurant owned by the father of a pupil who hadn't paid his invoice for almost a year.  Happily it prompted me to send him a reminder and he's now fully paid up, but the anxiety cost me a precious night's sleep and required me to adjust my medication to compensate.  The mania bubbles away under the surface, like lava, ready to erupt through where and whenever it encounters a weak spot.

I can't afford to wait a week for a prescription to come through in the event of a crisis.  I can't guarantee that I'll only need seven more Lorazepams in the next three months.  They might gather dust in my drawer, and in a couple of months time I might be able to add seven more to the stockpile.  Or I might use them all up in a fortnight, and have to resort to taking out-of-date antipsychotics which I still have leftover from my hospital stay in 2008.  I am not going to get rid of them whilst the system obstructs my attempts to stay healthy.  When will medical professionals learn to value their patients' years of experience of living with mental health conditions alongside their own clinical training?  When will they learn collaborate with instead of trying to control their patients, based on a single a ten-minute consultation?