How prescribing practice puts us all in our places

// 14 September 2011

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Drugs_Precriptions.jpg

Prescribing is political. Economic, too. But if you focus too hard on the obvious headline-grabbing issues – abortion, IVF and gastric bands – you may just miss the wider implications of how the system works in the UK and, to greater or lesser extent, abroad.

These are how it is set up by professionals, for professionals and mostly excludes the experience of those who live with particular health issues.

A good start point is the experience of groups who have historically found themselves on the margins – and for that I’ll return to the Australian case documented in my last post.

This explained that intersex individuals, who have some very precise hormonal needs are faced with a stark choice: self-declare as potential sex offenders; or source hormones unlawfully – and at some personal risk – over the internet.

This is because the Australian system lists “regulated” substances: and where a substance is regulated, a GP may only prescribe it for one of the officially listed purposes of that substance. On the plus side, that means some testing has taken place and there is some understanding of possible negative side-effects.

However, as several intersex people have written to tell me, it means that where a GP doesn’t want to treat them, doesn’t understand their needs, or isn’t prepared to take on the powers that be, they just won’t prescribe. This leaves a group of individuals who need hormones to treat conditions that range from the debilitating to the life-threatening wholly unsupported.

But they’re a minority? At the edges of medical knowledge?

Not exactly. The same difficulty manifests for trans men and women in Australia. It also manifests for non-trans women, whose choices for HRT have been progressively eroded by a toxic interaction between drug companies and prescribing authorities to the point where the only options available for them are limited, to drugs that some have difficulty in tolerating.

Still that’s Australia and nothing like that happens in the UK?

Not quite.

Take Camden.

In theory, if you are transgender, then recommendations for what hormone treatments you should receive are made by experts based within Gender Identity Clinics. Those recommendations are passed to local GP’s and, in line with current GMC guidelines, which acknowledge that experience counts and not everything can be tested for every purpose, the local GP’s should prescribe.

Except in Camden, they don’t. They won’t. For now, this looks like a mix of transphobia and local budgetholders pushing the envelope: seeing what they can get away with before someone in authority reads the Riot Act.

What japes! Except that behind this tale are trans men and women quietly crumbling with the despair of it.

Across the UK, similar games are played with the intersex minority. The same story for HRT. Those in power prescribe according to personal prejudice and often penny-pinching monetary considerations.

The GMC acknowledges that experience can be important, and if you have ever worked closely with any support group for a particular condition – from osteoporosis to polycystic ovary syndrome, from gender identity to autism – you will be more than aware how much knowledge, experience and expertise most groups have both of their own condition and of the pros and cons of available medication.

Frequently, their depth of knowledge far outstrips anything that GP’s can come up with: yet in the UK, as in Australia, that experience counts for nothing besides guidelines that place the rights of patients in the hands of a few sometimes very opinionated gate-keepers.

Picture of a neon “Drugs Prescriptions” sign underneath a balcony by Originaux Moose, shared under a creative commons licence.

Comments From You

Troika21 // Posted 14 September 2011 at 5:00 pm

This blog does seem to be generally hostile to the medical profession. This post borders on being conspiratorial. “[S]et up by professionals, for professionals and … excludes”, no, doctors (or whoever it might be), are properly trained and understand the issues involved. That some of them abuse the trust placed in them is lamentable, but no reason to tar the whole lot.

I don’t quite see what has happened here. From reading this it seems that you disagree with spending decisions, then blaming it on transphobia. As your own post outlines, there is a different procedure here than in Australia for dealing with these issues.

louise // Posted 14 September 2011 at 6:48 pm

The really horrible thing about prescribing is that in some cases the amount of money they save isn’t even that much. When I went on HRT to transition my PCT probably spent more money sending me to psychiatrists then it could ever of saved in prescribing. HRT is very cheap for the NHS and even the hormone blocker (Androcur) I took wasn’t very expensive.

Jane Fae // Posted 14 September 2011 at 11:42 pm

Hiya, troika. I’m not hostile to MOST of the medical profession as people (although if you found this post difficult, you might find the next one harder). In the case of prescribing and GP’s, though, what irks me is probably more to do with process and system rather than individuals.

The logic to this piece – and if it wasn’t clear, apologies – was to highlight how bad the system can be in places like Australia – and then to point out that IN THEORY, it isn’t like that in the UK. The GMC guidelines specifically allow for GP’s, who are NOT experts in these procedures, to take the advice of experts and groups with experience of using specific drugs into account in prescribing decisions.

I think that’s good theory: the problem is that because it is not binding on GP’s and pct’s, you get oases of bad practice – like Camden.

There, for some reason, GP’s have decided not to go with GMC guidelines and not to do what GP’s in most of the rest of the UK do and follow the guidance provided by those working in gender identity clinics. I don’t know why they have chosen to do that, but at a guess, its either about saving money or, in some cases, closet transphobia.

However, this is not just about trans or intersex patients: this issue of generalist GP’s acting as gatekeepers to specialist treatments affects ALL women…its just not quite so noticeable. Or maybe it is.

jane

Troika21 // Posted 15 September 2011 at 3:19 pm

Hello Jane, I accept that Australia has a callous official position to the provision of treatments for intersex people, however the UK does not, and I did feel that you made a somewhat sweeping generalisation, especially when taken with the reference to the Riot Act.

I have to say that I found you a little vague on what had actually happened in Camden that prompted this post. Penny-pinching might not be seemly, but its not a crime.

I do not know why (or indeed, if) Camden is not following guidelines, but they are only guidelines, and making them binding is not the answer, unless you want to get into an argument about where a sex-change operation comes in the great hierarchy of medicine, and what the NHS should prioritise.

Jane Fae // Posted 16 September 2011 at 8:21 pm

@troika…

Sorry if this still isn’t hitting the spot. The point i was making…the argument…is pretty much this: that prescribing ought to embody a process that recognises the needs of individual patients. That you can’t create rules for every group in existence. So, in order to avoid the sort of callousness that you get in Australia for intersex people, you need a system with a sensible exception procedure to it.

In the UK, the GMC guidelines represent such a procedure: basically, go with Pharma registered purposes and/or NICE recommendations but, where a case turns up that doesn’t fit those categories, allow that experts might have a role to play.

That is what happens for trans patients across most of the UK: they go to Gender Identity Clinics, which are staffed by specialists with expertise in the specific use of certain hormones and hormone suppressants. GIC’s do not prescribe: they make recommendations to GP’s as to what to presecribe and, in the main, GP’s go along with that.

Why wouldn’t they?

After all, they are hardly experts themselves in the use and prescription of hormones.

That said, some object. Some refuse. That is to be expected in an organisation as large as the NHS.

However within one entire pct – Camden – there is currently stalemate. GP’s refuse to honour GIC recommendations. GIC’s don’t have the power to over-rule GP’s.

My take is either penny-pinching or transphobia, imposed at the cost of individual patients’ health. If that helps explain…what would your take be?

jane

Philippa Willitts // Posted 17 September 2011 at 7:57 pm

Jane said, “However, this is not just about trans or intersex patients: this issue of generalist GP’s acting as gatekeepers to specialist treatments affects ALL women…its just not quite so noticeable. Or maybe it is.”

Sadly women in the disabled community are noticing it too. Tests that would have been ordered, and referrals that would have been written, by GPs are not happening. Some GPs are saying it’s that they have had word from above, to refer less, for financial reasons.

Because some disabled people have a lot more contact with health services than a lot of non-disabled people, we can sometimes experience these changes before most of the general public, just because we are at the doctors earlier. Or because we take up more resources and are rationed more severely – I don’t know.

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