You last left me doing what I do best – eating bread after an undignified episode in a Swedish Grocer, but I want to get back to the prescriptions. Or rather my lack of prescriptions. Now I should qualify this with the fact that I have a full time job, so this is a very high level viewpoint based on my personal experience (and the fact that I work on the outskirts of the healthcare sector), so sadly do not have the time to investigate or reference this in the detail I would like.

Initially, my GP didn’t know gluten free prescriptions were even possible. When I proferred Coeliac UK leaflets she said ‘no’ on the rationale that a) there area a wide range of gluten free alternatives available commercially and b) I could obviously afford them because my diagnosis took place in a private clinic (covered by my work health insurance, not me). Ditto the response on a request to see a dietician. In my particular case I can afford to live without, so I didn’t pursue this, but someone less empowered by the internet and without my means would be in a different position.

My GP’s rationale for not prescribing gluten free foods for me exposes a number of issues with the current system, and the NHS in general. Firstly the different levels awareness among Health Care Practitioners (HCPs) about coeliac disease specifically, and prescribing guidelines in general. Secondly, the inconsistent way in which prescribers apply NHS/NICE guidelines . Finally, the big issues – the overall value of offering certain items on prescription – should the NHS be prescribing gluten free at all? And whether prescription guidelines should differ based on the financial means of the patient (a question on the whole foundation of the NHS!). The much publicised issue of the one-off cases where exorbitant delivery charges have been applied are a distraction from the central question of whether the NHS gets value from its providers – in this case, the gluten free food manufacturers.

Does the NHS get Value from Gluten Free Prescribing?

Starting with the big ticket – the value question. This is central to much of the recent health care reform in the UK. My pharmaceutical clients are now well-versed in the concept of ‘QALYs‘ (Quality Adjusted Life Years), and other value-based judgements on whether the NHS will fund certain treatments based on the overall benefits to the patient and society. It may seem a crude measurement, but with limited resources, this idea of ‘value’ seems generally fair to me; and in most cases treatment providers are working collaboratively with the health service to demonstrate the value of their products and reach a fair agreement on the price of their product that reflects years of research and development; but provides value and helps the patient. For example in some cases the NHS will pay a fixed cost for a course of treatment rather than by dosage. In this context I wonder if the gluten free food manufacturers are doing as well as their pharma counterparts at demonstrating the value their products deliver to the NHS on prescription versus the costs to the NHS of supporting coeliac patients who struggle to comply with a gluten free diet and go onto develop other conditions like osteoporosis or bowel cancer? Unintentional lack of compliance to my gluten free diet has cost my GP many appointments and prescriptions to deal with the side effects. I would love to see a comprehensive analysis of the long term costs versus benefits to the NHS of preventative measures like gluten free foods and regular dietician meetings. After all, statins are now routinely prescribed as a preventative measure for cardiovascular events- so there is precedent for this if the evidence is there.

Does the NHS get Value from Gluten Free Manufacturers?

So on the one hand I suspect that as the gluten free manufacturers border the consumer market, they may not be so well versed in navigating regulation as the big healthcare players, but on the other hand I suspect that the NHS is not as good as extracting the best deal from them either – which is leading to cutbacks in all the wrong places. The commercial suppliers to the public healthcare system are easy targets for savings – the public (and the Daily Mail) love to hate big, bad corporations with their innovation and their cures and their employment prospects; but the NHS is a horribly inefficient buyer. A lecture I went to by the ABHI they quoted the statistic that the NHS give hospitals a choice of 133 different paper staplers. If stationary isn’t optimally procured, it seems little wonder that we get shock stories like “£17 for a gluten free pizza base”. I don’t have visibility of the cost of gluten free products to the NHS but with Glutafin mix retailing at over £13 per box on Amazon to the consumer, I have an inkling that the motivation for their products being prescription-only is that the prescription prices are just too fat to bother competing on the open market. Are gluten free manufacturers taking advantage? The patient is losing out in this situation as the easy remedy from the government is to cut provision completely, rather than address the tricky root cause – a need for efficient management in the NHS. It’s a bit like chopping off the whole arm because of a gangrenous finger in the middle ages.

‘Means Tested’ Gluten Free Prescriptions

So back to me and my expensive grocery bill. I took the decision to use my private health insurance to get my coeliac diagnosis rather than wait for months on the NHS. (It happened not to be the best choice, but more on that in a moment). Should I now be disqualified from other NHS provision for my coeliac disease because (at the moment) I can get by without it? This is het up in newly-minted middle-class guilt about going private for me. I don’t agree with means tested or tiered access to NHS services in principle, but on the other hand I don’t want to be a burden on the NHS if I don’t have to so I accept the decision not to prescribe to me because I don’t need it, at least not now, but someone else might not be so fortunate, or have the means to argue for their right to decent nutrition! In principle I believe my GP should have agreed to prescribe to me. I think her decision is actually more to do with the perception that bread & pasta aren’t a treatment than my financial situation. After all, she happily hands me prescriptions for OTC anti-inflamatories “so you can get them cheaper”. It’s more like the situation with travel vaccines- which I do have to pay for as those exotic trips are certainly optional. Sadly eating gluten-free isn’t an option for me.

The Potential Impact of NHS Reform

We of course cant expect every GP to be an expert in treatment of Coeliac disease, but what seems clear to me is that this problem of inconsistencies in prescribing approach will get worse, not better, with the proposed healthcare reforms. We already have inconsistencies in the way that prescribing and clinical guidelines are applied between PCTs; but at least in this situation Coeliac UK only has a limited set of stakeholders to discuss the issue of gluten free prescribing with. In the future their task will be altogether more difficult with a vast range of prescribing consortia responsible for the decision of whether to prescribe. Their only course of action will probably have to be to focus heavily on empowering the patient to have the debate on the value of their own treatment – a pretty hard conversation to have by any standards if you are not an educated physician and have just been given news of a life-changing illness. This will be a similar story for improving awareness of coeliac among HCPs. During my diagnosis after an inexcusable muck up I had to educate my GI specialist on the diagnosis procedure was based on a printout from the web! I might not expect my GP to know the ins and outs of my villi and IgA deficiency, but I hoped my gastroenterologist would. Having that conversation with a wise, grey-haired specialist with tens of years of medicine under his belt was scary and embarrassing. (Nil points private sector!).

Are Gluten Free Prescriptions still Necessary?

What about the abundant availability of consumer products as an argument against gluten free prescribing? Yes it is true that the range of products available has exploded even since my diagnosis, but prescribed food still plays an important role. Firstly from a cost perspective- if you’re on a budget those £4 bread loaves really aren’t an option, and how many children do you know who’ll eat quinoa instead of Jammie Dodgers?! In an effort to maximise appeal the gluten free consumer market is also heavy on the sweet end of the scale- prescription offers the only decent supply of many substitute flours and dietary staples like pasta. Prescription provision also offers important protection from the ebb and flow of the economy. Much of the gluten free market is made up of the faddy organic-set, who disappear as a market when times are hard leaving those of us with a medical condition without our sandwiches. Similarly whilst I have the luxury of choice in affluent yogurt-knitting Islington, not so much if you live near my family in the darkest Wiltshire countryside.

I wasn’t impacted too much by my (lack of) treatment. I am fairly clued up about food, have a supportive family and found my way through trial, error and a lot of googling. There have been a few upset tummies along the way and there were points at which even I really wanted an expert professional to ask questions of (I still don’t know whether I’m allowed to kiss my husband when he’s been drinking beer!). The social media community is a great help but some things you don’t want to tweet- especially when they concern your small intestine. Many others probably aren’t so lucky- they may not have ready internet access, my bolshiness or experimentative palette. NHS provision is vital for those people.

Some Constructive Suggestions

I’m loathe to write such a pessimistic review without providing some constructive suggestions to help. I think whilst consumer products aren’t an answer for everyone’s income, I think consumerisation of currently prescription-only products like Glutafin will help, as well as globalisation of brands like Fria and diversification of mainstream players like Warburtons. We are starting to see the impact of growing gluten-free provision on price with increased competition leading to price offers in Tesco and Brand Match in Waitrose; and a full on market share war for the free from wallet among the main supermarkets. The quality is also improving, bread is starting to taste like bread. It’s early days, but eventually we can hope that this will weather the economy and we can expect to spend the same on a loaf as the gluters.

As far as the NHS goes, I think I would like to see more of a partnership across the manufacturers, NICE, physician associations, Coeliac UK and patients to work together on how to best manage coeliac disease whilst giving value to the taxpayer. This needs to start with some proper evidence on the value of different treatment management approaches.

I would also be really interested to know why so few of my pharma clients seem to be pursuing Coeliac as a target for a new drug or treatment. That would be far easier to demonstrate the value of than ‘softer’ approaches like bread rolls and dietician appointments. In fact, if we were talking about pills and not sandwiches I’m sure the British public would view gluten-free prescribing in a whole different light! We understand that an injection is a medical intervention – not so much the bags of flour, yet baking is the only treatment I have.

Thoughts welcome!