Access to NHS Funded IVF: NICE if you can get it

To say that it is sometimes appropriate, even obligatory, for guidelines to be ignored will not make me any friends  amongst those campaigning for more equitable access to NHS funded IVF treatment. Nevertheless, and in spite of my discomfort with the inequitable access to IVF treatment experienced by people in different parts of the UK, I’d like to tell you why I think guidelines are made to be broken.

Which is not to say that I don’t value guidelines, far from it. As a patient and as a doctor I’m relieved that evidence based guidelines exist in a number of important areas. Commonsense, my own experience, and numerous informative course I’ve attended, all tell me that, if appropriately employed, guidelines can help inform the diagnostic, treatment and resource choices made by individuals, by healthcare professionals and by societies.

But there’s the crux, because when it comes to guidelines somehow, somewhere, it seems that in the last few years we’ve suffered a collective amnesia about what a guideline can and cannot do. The case of IVF access  provides a rather poignant reminder of why guidelines are no panacea for life’s resource limitations nor, and perhaps more to the point in this particular case, for the accountability that comes with political leadership.

When you’re a health care professional, new, revised, and unsolicited guidelines are a daily fact of life. A few years ago these were all printed hard copies. At one time they arrived at such a rate that they might well have constituted a fire hazard. More recently, guidelines are routinely accessed via the internet, with helpful reminders (in the UK) from NICE (the National Institute for Health and Clinical Excellence), the Chief Medical Officer, and the Primary Care Trusts reminding the guideline-conscious doctor, nurse or manager where to go to find out more.

A little overwhelming at times perhaps, but objecting to being guided and informed would clearly be churlish and unwise. So, roll on the guidelines, so long as they don’t involve chopping down too many trees or actually reading them all. Except somehow, from their humble yet persuasive origin as distillations of evidence and specialist wisdom, guidelines have morphed into dictates from on high, conformed to rather than informing. That isn’t, generally, how they are written but it is how they’re all too often read and acted on by doctors just like, and sometimes including, me.

Let me illustrate what I mean by a personal anecdote. A few months ago I accompanied a member of my family on a rare trip to see a local GP. I knew what she needed- I’d been told by the specialist treating her- and I’d done a fair amount of subsequent research to inform myself about her condition and how it could best be treated. Like many an informed health care user, I wanted to save the doctor time by giving him a well-rehearsed summary of her rather complex history. After all, as a GP, I only knew about this new but NHS approved treatment because it affected my family.

The GP paused, looked at his computer with a pained expression, and said, “That’s not NICE guidance and you see, we CONFORM to NICE guidance at this surgery.” The emphasis on conform was his not mine and left me with a number of thoughts relevant to this blog.

Number one: Don’t say what you’re thinking or you might not get the meds she needs.

Number two: Are there really NICE guidelines to cover this? And, even if there are, this is NHS approved for a reason, and she’s sitting here in front of you. 

Number three: There’s a student doctor sitting there swallowing every word, and you’re telling him that guidelines are meant to be conformed to. “They’re not”, I wanted to tell him, “They’re there to inform your decision making, not make it for you.”

We did get the treatment needed in the end and no, there are no NICE guidelines to cover the treatment my relative needed. But I’m still left pondering how, and when, we lost the collective plot about what a guideline is and how it should be used. Even the best constructed, researched, and evidence-based guideline can’t predict exactly what is the best thing to do in all possible situations for all possible patients. It just can’t and was never meant to be able to.

That, surely, is why a person- trained and experienced and able to make judgements- is there to make decisions, along with the person who is unwell, about what is best for this particular individual, at this particular time, given his or her  social, personal, cultural, and occupational context and preferences. 

The key word in the application of guidelines to medical practice is surely inform and not, as sometimes seems to be assumed, conform. In an ideal world guidelines are based on a thorough and expert evaluation of the current evidence base with regards to the pros and cons of the various available treatment options for a particular condition. To be of any use, that evaluation needs to take account of the context within which treatment will occur. What may be possible, for example, in a metropolitan area may simply not be feasible in a remote rural setting. What may be desirable, in theory, may not be deemed of sufficiently high priority when weighed against conflicting demands- local, national or global- on limited resources.

So what, you might ask has this all got to do with concerns about inequitable access to IVF treatment on the NHS. Well not a lot, actually. Because the NICE guidelines on IVF access aren’t really guidelines in the sense I’ve been talking about. They’re not guidance on the best evidence in terms of how to get pregnant for those experiencing fertility problems. Instead they’re a statement of both aspiration and compromise: the aspiration that local health care providers will decide to allocate sufficient funds to provide three rounds of IVF to all infertile couples (none having been ring-fenced for this purpose from central government funds) and the compromise that leaves implementation of this policy to local discretion.

Not guidelines then, but rather an aspiration that local choice will somehow lead to the implementation of what has, inevitably, been interpreted as- although denied by ministers as being- policy. Enabling every infertile couple to have access to three rounds of IVF treatment sounds like a reasonable compromise between the understandable desire for unlimited access to IVF felt by some infertile couples and the reality of a resource constrained health system. It’s an admittedly popular idea, but also one with a significant and unhelpful identity crisis.

If it’s a guideline, then the fact that this is one of the areas where decisions about resource allocations are locally devolved will, almost inevitably, lead to inequitable provision. On the plus side, local health care providers that allocate less resources to IVF services will, presumably, have more money for other services. If it’s less of a guideline and more of a policy statement, or more accurately an aspirational statement about what would be desirable, then ring-fence the money and mandate implementation.  

One last thought: funny isn’t it how aspirational guidelines- like the ones for IVF- remain discretionary, whilst ones that prohibit expensive treatments can’t- in practice and most of the time- be deviated from (drug treatment for early Alzheimers is one of the best current examples of the latter). Evidence-informed or politically convenient and financially expedient?

So, health care professionals who are informed or who simply conform? Time to decide which better serves the needs of patient.