Gluten free prescriptions

If you have reasons to support the scrapping of gluten free prescriptions, they are probably unreasonable ones.

“Gluten free foods are widely available now”. Even the Department of Health is pushing this one upon us, as they outline in their consultation on the prescribing of gluten-free foods. It may be true for supermarket-rich metropolitan areas, but not for many rural or remote areas of the country on which members of the Government or other civil servants rarely bother to set foot, where availability is patchy at best.

“Prices are coming down!” Are they? A bit, perhaps, but not enough to help the most in need. Here’s an example of GF bread 8 times as dear as non-GF bread, gram for gram.

“Nobody needs bread. Just eat rice and potatoes!” A personal piss-boiler, this one. You just eat rice and potatoes, and see how you like it. While you’re gorging on potato chip rice balls and risotto di spud, you’ll have nutritional insufficiency to look forward to, as Coeliac UK emphasised in their response to the latest attack on GF prescriptions:

Replacement of breads with rice and potatoes, as some suggest, risks the nutrient content of the diet. For example rice has 96% less iron and 90% less calcium, while potatoes has 71% less iron and 93% less calcium.

“I’d rather the money be spent on people with cancer”. You could make that argument for virtually any treatment on the NHS. And if you do, then you are supporting not an NHS, but a National Cancer Treatment Service, which won’t be much good to you when you have an infection and need antibiotics, or can’t walk and need a hip replacement, or are struggling to give up smoking and need the support and motivation a GP and replacement nicotine treatments can provide.

“You don’t need specialist GF foods to stay alive”. It’s called the National Health Service, not the National Staying Alive Service. It’s about quality of life, maintaining your well-being, preventing the NHS-draining future consequences of developing osteoporosis, other AI conditions, duodenal cancer, and not sticking to a GF diet – not being able to afford to, not having easy access to it – risks those things.

“Do diabetics get sugar-free chocolate on prescription?” The weakest bleat of all. Diabetics don’t need sugar-free products anyway, and chocolate is a treat not a staple like GF pasta upon which to base a life-sustaining meal.

“I’m not rich but I don’t ask for GF prescriptions”. Well, bully for you. You’re not rich but are you poor? Can you afford to feed your child something gluten-free this evening? Some are and they cannot. You and your n=1 situation and experience does not qualify you to decide on behalf of everyone.

“Why should the NHS pay for your free food?”. Most pay for their prescriptions, so it’s not free. And paying will help prevent further expense to the NHS, down the road, as above. It’s basically an investment for them.

“I’m f***ing angry!” You are, and you’ve not researched, nor understood, and you’re shouting at the internet, and you’ve never heard of coeliac disease and you’ve Literally No Clue. Therefore, get yourself a clue, and thereby an informed opinion, not a right-wing knee-jerk populist one that’ll earn you a few likes on Twitter from anonymous eggs whose ignorance levels are equivalent to yours.

Enough.

Coeliac UK want to maintain prescriptions. See more reasons and evidence here.

Dietitians want to maintain prescriptions.

Gastroenterologists want to maintain prescriptions.

Medics overwhelmingly want to maintain prescriptions – as this BMJ poll from 2017 demonstrates (scroll down a bit), 71% to 29%.

They are the experts. They have the experience. It is their well-informed opinions based on evidence that really count and matter – not the likes of the anonymous trolls who get off on depositing illiterate comments under clickbaity newspaper articles.

What to do:

Look – the system’s not perfect (even Coeliac UK acknowledge this): it’s archaic and is over-ripe for a total rethink so that the NHS pays less and the process is more efficient and fluid. But that’s no reason not to try to save it. So:

1. Ask your MP to support Kevan Jones’s Early Day Motion to maintain GF prescriptions.

2. Share your story with the Guardian – who want to hear from those effected by any future decision to cut GF prescriptions – or encourage and help someone, perhaps vulnerable and elderly, who does not have online access, to do so instead.

3. Support Coeliac UK, any way you can. They’ve been working themselves into the ground over this. Even something minor like sharing a picture of an empty free from shelf on social media – to help bust the myth of widespread constant availability – can help. See CUK’s page here, for other ideas.

4. Tell the Government what you think. They have asked for feedback so give it to them. Don’t rant, don’t SHOUT. Calmly explain why you support GF prescriptions, if indeed you support them. One anecdote, one example, one good reason – that’s all you need. I suspect the shorter submissions will be given more credence and time than longer ones.

Got any fair reasons to support the scrapping? Genuinely interested in hearing them … 

6 Comments

  1. Derek Thompson

    Hi Alex, Derek Thompson here at Gluten Free Ireland – http://www.glutenfreeireland.com

    I read your article on GF Prescriptions in GB and thought this might be of interest.

    We know from feedback we get from our Followers online and those attending the GF Food Fairs we run each year that the provision of GF food from GPs in Northern Ireland has been “patchy” to say the least!

    Late last year we contacted our Patient and Client Council regarding gluten free food on prescription and in November they arranged for my wife and I to meet the Health & Social Services Board members responsible for the topic in Northern Ireland.

    We were delighted to find that they were aware of the problem and we found ourselves pushing against an open door!

    However, hearing the problem directly from a suffering Coeliac (my wife Tina) convinced them that action was required and in January the Board issued a letter to all Health Trusts and GPs in Northern Ireland.

    The letter confirms that GF food is available on prescription and sets out the prescribing conditions, types of food and quantities available as suggested by Coeliac UK.

    At present Prescriptions are free in NI so we reckon this was a major win on behalf of the local Coeliac community.

    Kind regards,

    Derek Thompson

    Reply
    1. Alex G (Post author)

      That is indeed a major win, Derek – and thanks for sharing that story. Such good work, and shows just what patient power can achieve. Suspect an English equivalent Council might be a tougher nut to crack, but no reason for coeliac community in other parts of the GB not to try!

      Reply
  2. Micki Rose

    The GF diet is the prescription for CD just the same as, say, Metformin is a prescription for diabetes so why should dietary prescription items be any different? People have to have them and if they can’t afford them or get them rurally, this affects quality of life, healing and essentially means you are denying them their medicine. Stoopid.

    Reply
    1. Alex G (Post author)

      Stoopid squared!

      Reply
  3. Catherine Collins RD

    Brilliant article, with one caveat.

    Gastroenterologists essential at diagnosing and delivering safe care in terms of coeliac disease. But when it comes to experts, it’s the DIETITIAN who delivers.

    It’s the dietitians who engage with newly diagnosed, shocked people. We help you feel safe about their diet. We offer solutions, advice and can recommend gluten free products based on your individual needs and lifestage. We act as your professional advocate for prescriptions dealing with cynical GPs or commissioning groups who *think* requiring gluten free food is an extension of food purism. We can help justify the particular products you need on ‘script and why.

    For those without coeliac disease, it’s far more complex than ‘just check the label for wheat or gluten’. Dietitians can offer practical advice if you need extended exclusions – eg gluten exclusion extends to oat avenin. Or if secondary intolerances are present – the symptomatic but less damaging soya or lactose intolerance. Or if your genetic predisposition to coeliac disease has also dealt you another poor hand in its co-existence with your diabetes, or rheumatoid arthitis.

    It’s your dietitian who ensures your coeliac diet isn’t lacking in nutrients for short term issues – eg fertility- and longer term concerns, such as osteoporosis risk. We offer psychological support and encouragement for when your coeliac diet is really getting you down. You miss the excitement of choosing any food whatevs, and your absence of symptoms helps you think you’ve *got away with it* when you *cheat*

    We are the ONLY healthcare professional, who truly understands your condition and the impact it has on daily life and dietary choice. Having a ‘responsible healthcare practitioner’ offer advice to people with coeliac disease is not the same thing – whatever NICE imply.

    Reply
    1. Alex G (Post author)

      Brilliant comment – thank you Catherine. Easy to forget or under-estimate the vital role RDs play, and not only in those difficult early days.
      Is soya intolerance common in newly diagnosed coeliacs? Do we know what the trigger component is – a FODMAP, a protein?

      Reply

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