Monday, 10 September 2012

Slightly Reassured, but...

After last week's bombshell over my painkiller prescription, I arranged an appointment with my GP for this morning. That turned out to be with the junior doctor in the practice, the one who recommended a month ago I actually increase my dosage, not cut it entirely.

Fortunately I got some sense out of her, though I'm still not entirely happy with what's going on. Apparently one of the higher-level agencies involved with prescribing has done some data-mining and decided there is too much Butrans being prescribed in Medway (it doesn't seem to have occurred to anyone this might have something to do with Medway being a former industrial centre, which is likely to have a higher than average concentration of people with ongoing chronic pain as a result of industrial injuries) , but rather than calling patients in for an individual review, my GP just decided to have a blanket change of prescriptions.

The junior GP did admit that some people will need to remain on Butrans after the process (and implied that GPs will need to individually defend any such decisions), but in the meantime we're being asked to jump through hoops not for individual medical reasons, but for some statistical anomaly. Given a doctor willing to work with me, I've actually managed to turn this to my advantage, we've agreed to try switching Butrans for Gabapentin, which is a pain-control drug I've wanted to try for a while. But equally I've had friends experience some quite frightening side-effects on gabapentin, so it's not a move to be made lightly and I may end up in a month's time back in the doctor's office, arguing that I'm one of the patients who do need to remain on Butrans. Sigh.

As an additional bonus, in flicking through my notes the junior GP noticed that there had been no follow-up from the nerve conduction testing my orthopaedic consultant arranged last year and chased it up on the spot - only to find no one answering the phone <rolls eyes>, I've left that one in her hands to see if she can get a response as to what they found - this was the test that ended with the consultant turning to me and saying 'Well, something's clearly not right', which isn't the most precise diagnosis I've ever had, nor particularly reassuring.

The NHS, can't live without it, can't live with it!

Thursday, 6 September 2012

Frankly Scared

When I went to bed last night I was happy. I was still in a lot of pain from my trip to the Paralympics the day before, I'd decided it really is time I look at the wheelchair option, and that I needed to talk to my GP about it, but these are the everyday realities of disability, they didn't change the fact that I was happy.

This morning I was woken by a phone-call, and now, frankly, I'm scared. The call was from my GP, in relation to the repeat prescription request I put in yesterday for my painkiller, Butrans (aka Buprenophine), and what she told me staggered me, she has been told to stop prescribing it. And although she was reluctant to go into the reasons, it appears they are solely financial.

In fact I had my annual medication review barely a fortnight ago with one of her colleagues, and her recommendation was that given the amount of pain I was reporting, I should actually increase the dosage. I declined the offer, I'd like to be able to increase the dosage, but I've tried that before and the side-effects don't make it worthwhile. But now, without any medical assessment of what it will do to me, I'm told that my prescription is going to be stopped. Worse, the drug suggested as a substitute doesn't work in remotely the same fashion and I know from past experience that it has side-effects bad enough I preferred to take nothing whatsoever.

Pain destroyed my working career, management weren't willing to deal with someone who ended up curled up in pain on the office floor most days. If I'm to have any hope of returning to work, I absolutely need to have effective pain control. Butrans is the only drug I've ever found that gives me that.

Technically Butrans is an opiate that's approximately 40 times the strength of Morphine (some literature suggests twice that), which means that my 5 microgramme/hour patch is delivering an equivalent of about 200 microgrammes of morphine/hour. The equivalent drugs are all similar opiates, all, like Butrans, on the controlled drug list, and the 5mcg/hour patch I use is the lowest strength available. The patch formulation is also both a more effective delivery mechanism, I'd need a far larger dosage for equivalent effect if taking it intermittently by mouth, and safer as it cannot deliver a higher dosage over a shorter time. Amitriptyline, the drug offered as a substitute, works in an entirely different manner (opiates work by bonding to opiate receptors, amitriptyline is an anti-depressant that has incidental pain control effects because it interferes with serotonin metabolism), I've used it before and it is completely ineffective on me as a pain control mechanism, while having overwhelming side-effects that left me barely able to function intellectually.

The single most effective step in pain control is when you take control of your pain rather than your pain controlling you. When I first went onto Butrans about four years ago it was a revelation, I had no idea that it was possible for me to live in so little pain. The amounts of pain I was experiencing were still disabling, but at least my first reaction on waking wasn't to yell out in pain anymore. Now the proposal is to take that away from me, for financial reasons, not medical, and frankly, I'm scared.