Should coeliacs be entitled to gluten free food on prescription?

There have been an increasing number of news articles on the topic of gluten free food on prescription recently and (understandably) it’s one that coeliacs have a lot to say about. For those who aren’t aware, at present in most parts of the UK diagnosed coeliacs are entitled to get some basic gluten free food on prescription from the NHS. The only treatment for coeliac disease at the moment is to follow a strict gluten free diet so some coeliacs can get some staples such as flour and bread on prescription (despite what some articles say, this wouldn’t usually entitle people to biscuits, cakes or other luxury items). Unless you’re entitled to free prescriptions you have to pay for your prescriptions; most who choose to have gluten free food on prescription use the prepayment certificate option.

As budgets are tightened, local CCGs are having to make difficult decisions about how to save money, and one of the things some of them are looking at is reducing or stopping gluten free food on prescription for those with coeliac disease. My local areas is currently reviewing their policy on providing gluten free prescriptions. The briefing document on gluten free prescribing in Stoke on Trent and North Staffordshire outlines the costs and options available. The options are to continue as present; stop the prescriptions; or provide limited prescriptions.

I used to use the gluten free prescription service. When I was first diagnosed with coeliac disease I was introduced to some brands who are only available on prescription and my GP added a few of these items to a repeat prescription. I decided to get a prepayment certificate so I paid just over £10/month and for that I was entitled to a certain number of units of gluten free staples. I used to order through the electronic repeat prescription scheme so I would submit the repeat prescription online (via a mobile app) and once it had been approved by my doctor I would call the local pharmacy who would order items (and in my case deliver to my door when it was ready – though I don’t think this is common everywhere!). Many of the items on prescription you can only order in bulk and as we only had a small freezer compartment much of this space was dedicated to bread! I used to order probably on average about once every three months and would order bread (either sliced loaves or rolls), crackers, and multipurpose gluten free flour. Once I was more used to the gluten free diet and items became more readily available in supermarkets I decided to stop my prescription as I’m fortunate that my local stores have what I need and I can afford to buy them (gluten free alternatives are often a much higher price).

Although I don’t currently use the NHS gluten free prescription service, I would be very sad to see it stop. It was incredibly helpful for me when I was first diagnosed, and I know it would be beneficial if my circumstances were different (e.g. if I didn’t live near stores that had a good selection of good quality gluten free food, or if I couldn’t afford to buy gluten free versions).

If the prescriptions are stopped, some coeliacs may choose to continue to eat gluten (it can be difficult and expensive to follow a gluten free diet). If coeliacs continue to eat gluten, they are at much higher risk of many other medical conditions such as anaemia, osteoporosis, infertility, and cancers. I don’t have figures, but I believe the potential cost to the NHS if coeliacs don’t stick to a gluten free diet would be much higher than the costs involved in helping them follow a gluten free diet. There are other ways to support coeliacs (e.g. educating coeliacs to help them follow a gluten free diet and working with organisations such as Coeliac UK to improve the situation regarding labelling and availability of gluten free food), so this may be one way to reduce the future strain on NHS, though it is likely to involve a lot of work (and therefore cost).

I would welcome the CCGs considering other options such as voucher schemes which are being trialled in some areas where NHS provide vouchers which can be used in local stores to help towards the cost of gluten free food. This way the market is encouraged to provide gluten free food in stores, and those who *need* to follow a gluten free diet but may struggle financially are supported to enable them to follow the diet.

I attended a local coeliac meeting which was attended by representatives of the CCG as part of the consultation, and I also completed the online survey (both time I encouraged the CCG to look into alternative options). According to the CCG website they received over 300 responses to the survey (which I don’t think is that great to be honest!) and have developed a recommendation for consideration at the next public Governing Board meeting. Based on what has happened in other areas, I imagine the prescriptions will be stopped, though I hope this isn’t the case. I was pleased to have been able to be part of the consultation and look forward to hearing what the outcome will be.

Does your local area provide gluten free food on prescription? Do you use the service? Do you think NHS should provide gluten free prescriptions?

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This entry was posted in General.

One comment on “Should coeliacs be entitled to gluten free food on prescription?

  1. Bridget Range says:

    I am very concerned that the CCG North Staffs have decided to stop free prescriptions on gluten free foods- I only request bread flour mix on prescription and find it will be very hard for many Coeliacs. they could have considered only allowing bread or bread flour. I had to visit my Doctor recently he gave me a prescription which I did not realise until it was delivered electronically was for Paracetomel and ibuprofen which I could buy from a chemist myself that to me is a wicked waste of money to the NHS so perhaps the CCG ought to look at the right places to save money and not penalise Coeliacs. Very disappointed in the CCG decision

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