Call to ban prescriptions for gluten free foods - would it make a difference to you?

The heat is on, or so it seems. There's a call to do away with prescription gluten free foods. We know that many of you don't bother with these anyway. How would you feel? Would it make any difference? There are several different schemes throughout the country and a trial took place in Cumbria to enable pharmacists to handle all prescription requests. What would you suggest as a good option for NICE to recommend?

bbc.co.uk/news/health-21449368 #coeliac

28 Replies

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  • As somebody who receives prescriptions for GF food I have mixed views on this. First of all I do think that we should have this provision but the system under which it is provided is out dated, costly and very time laboured for all concerned which in turn adds to the time management of Doctors and therefore their costs. I also think that the companies who provide these foods are taking huge advantage of the system of so called "prescription food" in order to charge ridiculous and outlandish prices.

    Im fairly new to the system, so recently when ordering a certain food which I liked on prescription I found that I ran out of it well within the month. When I tried to see if it was possible to get some more and pay for it myself I nearly fell off the chair when I was told the price I would have to pay for it. It was five times the cost of a normal packet of the same item in a supermarket and yet it was smaller and contained less. My GP told me this was because they call them "medical products".

    These companies are ripping off the NHS and in so doing are stabbing themselves in the back. I want to be able to continue to get these foods because they are superior to those available in the supermarket which are not always available, but as a tax payer I also cant sanction these companies charging the costs that they are.

    In the above BBC article it stated: Left untreated coeliac disease can lead to serious health complications including malnutrition, osteoporosis, cancer of the small bowel and infertility problems well some of these things are true for Vit D and most PCT's are clamping down on supplementing that too! Dont get me wrong I dont agree with it because if the NHS is now adopting a firefighting strategy rather than preventative care then we will never get ahead of costs and before long it will be only emergency care that will really be properly covered on the NHS.

    Unless a completely new system is adopted and the companies who supply the "prescription" food are forced to lower their costs in line with those of foods suppled to supermarkets, I dont see how the present system can survive and as usual the patients will be the ones that suffer.

    Thats my 2 pennies worth!!!

  • Totally agree the NHS is being ripped off. With my prescription flour I occasionally get the invoice left in. 500grms for approx £8.00. I thought this was outrageous, only to find that the total cost (i.e. delivery added) brought the total to nearer £18.00 The NHS can not sustain this type of cost and someone somewhere will crudely put a stop to all prescriptions.

    Far better to acknowledge the problem now and sort out a value for money system that delivers essential stuff (flour/bread/pasta).

    I only get/want flour for bread making, pasta and xanthan gum each month and this just about covers my needs. I`d be happy to trail either vouchers or a `budget`. If there is abuse, as per the BBC article, then the abuse would need to be extensive for it to overtake the prices GF food manufacturers charge the NHS.

    Reply to this

  • For some Coeliac's this would be totally unfair because there are those who cannot buy of the free from shelves and many of the foods available on prescription are unsuitable because of ingredients. Apart from the cost of foods available in supermarkets the prescription foods can be seen unfair competition and should be available over the counter at sensible prices, competition might be infavour of the consumer or against them.

    The only difference for me would be the Pasta @£1.60per pack and crackers @£1.60 each The rest are off limits. As for Doctors opinions I am not impressed that most have a clue about this condition.

  • Thanks for posting this Irene, this has been brewing for a while now with some PCT's making severe restrictions on what is allowed to be prescribed. And with more coeliac being diagnosed coupled with the cuts to the NHS this is inevitable I think.

    Now lets look at what other countries that do not have gf food on prescription and in some of them due to demand gluten free bakeries and cafe's are springing up which I for one would welcome. So if the NHS were not spending £27 million on gluten free basics there could be openings for dedicated bakeries/cafe's in the UK.

    In the EU coeliac can buy Semper gluten free codex wheat for 2-30 euro's which's around £2.00 but if a coeliac orders this through Boots it's around £9.00. Semper is owned by the Hero food group that also own Juvela and others

    semper.se/en/semper-gluten-...

    And how much does 500g of codex wheat cost the NHS , according to the NHS it's around £7.00 and according to Juvela it's around £3.50 so why is it only £2.00 over the counter in the EU?

    I do feel a lot of empathy with coeliac who are reliant on food on prescription but the prescription co's have brought this on them selves and it is not fair on the NHS or the coeliac recipient.

    Also codex wheat starch might have the taste of 'normal' bread but it is very refined as it has been washed repeatedly in solvents to remove the bulk of the gluten so it is inert and has no nutritional value apart from being fortified and the calcium that it is fortified with is just calcium carbonate (chalk) But fresh bread made with it does taste more like normal bread so maybe coeliac would eat healthier alternatives.

    I'd be happy with supermarket vouchers or better still a tax allowance as a replacement to food on prescription.

    It might be worth having a poll on GFG to see who gets food on prescription and to vote on the best alternatives.

  • As a parent of coeliac children I am really concerned about the possibility of removing prescriptions for GF food.

    Even with food on prescription my shopping bills have increased since my children were diagnosed as coeliac. I have always cooked from scratch and all I buy from the 'free from' isles is Doves Farm flour and cereal as I find other items very expensive. I am fortunate to live on a relatively comfortable wage, however I often wonder how parents of coeliac children on very low incomes cope. Every time my children go to a party I have to provide them with their own selection of party food, at school I have to leave GF alternatives of birthday treats/ cooking activities, I give school some GF flour so my youngest can play with playdough, on top of the expense of making sure all their meals are GF.

    Whilst supermarket vouchers may sound appealing to some, not everyone uses large supermarkets. I don't live near a large supermarket, I do have some small ones nearby but they stock a very limited range of GF foods. Instead I rely on two excellent health food stores and a fantastic greengrocer, all on my local high street.

    A tax allowance/ budget does appeal to but I know I would put this towards funding my children's GF lifestyle. However I do wonder if some cash strapped families would be tempted to use this money on other things, at least with the current system their children are guaranteed a supply of basic GF food.

    However I do see flaws in the current system. I still can't get my head around how a 1 point loaf of bread costs £2.90 in my local shop, yet 2 points gets me 500g of flour when I can buy 1kg of GF flour in my shop for £1.70. I am sure that alot of money could be saved by making this area more competitive.

  • yea i was suprized how little in price the flour was i love asda gf flour nice texture too gonna have a go at making bread as i have a bread maker just in case

  • I tried the Dove's Farm Flour but as Jerry knows to much Gluten for me!

    It is not based on points it is Units = 250grams Very surprised no one mentioned before.

  • i am on a pension so would find a bit hard to pay for bread ect my as cut down mine to rolls and bread flour on saying about the flour it was only 1 50 from asda and much better than perscription any way and i if they did would try and make my own as i do with all my food now

  • My son gets stuff on prescription. He's a student on a low budget so it's a godsend to him as buying gf is so terrifyingly expensive.

    But the system isn't ideal. The most ridiculous is fresh gf bread which now comes in boxes of 8. If you freeze it then it disintegrates if you try to make it into sandwiches.

    If you keep it in the fridge it's getting very tired towards the 7th & 8th loaves and sometimes one goes mouldy. It was much better in 6s but 4s would be better still.

    Best of all would be allowing it in units of 1 or 2 from supermarket pharmacies - they could take it off the supermarket shelf so it would be fresh and you could have variety with no special delivery costs... But of course that would be too simple and isn't allowed!

  • I have been long term sick since 2008 and now keep my home going on a £6K PA pension which is topped up by £1.5K PA my OH contributes £2.4 K PA so I am very lucky not being able to have off the shelf GF foods or most GF prescription foods. I have to live within my means.

  • PS. I also buy my 60 Piriton, painkillers & imodium each month out of that!

  • I now get one loaf of bread free on prescription since last May 2012.

    I dont bother with it because it is glutafin wheat codex anyways.

  • Asked by pretender 2 hours ago

    2 answers

    What would you do if stopping gluten free foods on prescription happened tomorrow?

    What difference would it make to you?

    For me no difference at all!

  • MrsJourns 2 hours ago

    As a parent of coeliac children it would increase my monthly shopping bill by at least £50, this would mean I would have to cut back in other areas. I would fear for families already living on a low income.

  • Jerry VOLUNTEER 27 minutes ago

    Hi folks, I think that we have to be careful here not to focus on the negative side of change as we do not know what would replace prescription food.

    1) The retail market is in decline so there would be openings for independent bakeries and cafe's.

    2) We might end up with a tax allowance.

    3) We might be given vouchers that could be used for food in supermarkets and for those in the middle on nowhere with mail order retailers like Amazon and Goodness foods.

    4) Legislation could be passed so that naturally gluten free foods are kept just that gluten free so kept free from contamination.

    I also think that we have to ask ourselves what we want from the NHS and surely the priority should be on medication so that as many people as possible have access to the medication that they need as I know that I would rather that children could get expensive med's for treating cancer than me getting a loaf of bread.

    I haven't got food on prescription for years so I would not miss it. I make my own bread cakes and biscuits and am lucky as I find baking relaxing. I buy rice flour for just over £2.00 for 1.5Kg and the most expensive flour that I buy is quinoa flour and that's just under £2.00 for 500g.

    So if gf food on prescription were stopped tomorrow it would be like another learning curve for coeliac just like when we were diagnosed so I think that we as coeliac and those who represent coeliac should focus on what would make our lives easier and safer food wise without prescription food. Which incidentally started during WW2 when tinned bread was available to coeliac.

  • Quote Jerry, "we do not know what would replace prescription food."

    Who has indicated that anything other than common sense will replace prescription foods, because with the gluten free market they are not classed as medicines but fall under the Food Standards Agency as food.

    My question even directed elsewhere was if prescription foods were stoppen tomorrow what would you do.

    Thank you folks!

  • As a single parent on a low income it would make a huge difference to me & my two boys . I already buy extra gluten free items over & above what we get on prescription & that adds a lot to my weekly shopping bill .

    And yes I do cook everything from scratch no shop made ready meals for us .

  • I'm not on a prescription because I refused the endoscopy, but think both Coeliacs and the proven Gluten Intolerant should have access to gluten free food via the NHS. To me it sounds like a weekly money voucher would be a far more cost-effective and useful option and useful, both for the NHS and the GF person.

    Reading the posts here its obvious that people on limited budgets would really struggle without their prescriptions, especially those with children. I'm on a limited budget but luckily as I work from home I have more time to cook from scratch and search out GF bargains. I've still had to go without some small luxuries I could afford before however.

    On the positive side - if there is one - I do wonder if the current prescriptions which add corn and codex wheat to the diet is good for the GF? I have to avoid both because they cause gastro reactions.

    I believe the government know the diagnosis of Coeliac Diseas /gluten Intolerance along with other auto-immune diseases are going to reach epidemic proportions in the next few years which is probably why they are making moves to cut this now.

  • In Rotherham the prescription for food is done by a dietician. We are allowed 12 units and only bread, flour, pasta and cereal, no luxury items like cake mixes or biscuits. This has allowed the PCT to save money and has freed up G.Ps time.

  • I was under the impression that everyone only got bread, flour, pasta and cereal or products around those items. I thought all cakes , mixes and biscuits had been stopped as luxury items. Also two manufacturers have stopped charging delivery charges on fresh bread but thats just the start, there needs to be more done. Like medicines I believe there is a dispensing charge to add to the costs too!

  • Not the case, it is how your Coeliac condition is seen and how your GP or prctice prescribe.

    Myself I get Crackers, Pasta's Macaroni and biscuits could have cake but for the ingredients

  • I think this is the best systom it happens in bedfordshire too

  • I feared when I was diagnosed that ultimately gluten free food on prescription would disappear. I have gradually been trying to 'wean' myself off these products and become self sufficient. I have found that the more food you can buy or get on prescription the less food you try to make yourself. I am now down to 2 boxes of cereal a month this is is the equivalent of 3 units.

    Not sure whether it would be a good idea for the pharmacist to run the scheme in my pharmacy they can't understand why I have so little compared to others who get gluten free prescriptions. I don't regard it as my right to have lots of gluten-free food as some other coeliacs do. I also think it is in the pharmacists interest to encourage dispensing of more food rather than less

    I think it would hit those on low incomes, with more than one person in a family with coeliac disease and some pensioners very hard. I have seen comments from others regarding the mark up on it and totally agree however I am sure the prices of this stuff wouldhave to be reduced if the prescription market disappeared who on earth is going to pay £8.00 for bread mix. I also think that if everyone was squeezed for the basics ie bread people aren't going to be treating themselves to nice cereal at £4.00 a box and other treats from the free from aisle.

    The supply of bread in the free from section would need to be increased dramatically, can you imagine how much more they would need to stock if lots of people were trying to get their 8 loaves a month from the supermarket. Sometimes you're lucky to find a couple of loaves on the shelf!!

  • I get all myj Juvenal bread on prescription from boots andthestaff are marvellous I freeze it straight away and take out slices when I need it I also like their part baked its lovely when it comes out of the oven the only trouble is I eat the whole loaf it's so nice i hope they don't stop it on prescription

  • They were stopped almost 2 years ago here. We are allowed 1 loaf of bread a month.

  • I moved to Northants almost 3 years ago and was surprised to learn from my new GP that my local Pharmacist would be directly responsible for my supply of GF foods. This does work pretty well I must say, and they are most helpful, almost automatically re-ordering on a monthly basis. However, as a pensioner I would find it financially difficult if I had to pay for the bread, pasta and flour mix I currently get on prescription. As my husband and I both eat the GF pasta I do buy the pasta also (it is such a waste of Energy cooking two separate portions, one GF and one 'human'). Also I have yet to find a supermarket bread as good as the Glutafin I currently get, none of them make nice toast, and go stale and crumbly before you finish a loaf, and believe me in my 22 years as a coeliac I have tried them all! The flour mixes have improved over the years, but are still more grainy than the Glutafin, which does make excellent cakes etc. I personally could not live without bread, much preferring it to crackers on a day to day basis. Maybe if they bring the price of GF bread etc. more in line with 'human' (my grandchildren's word for non-GF foods) foods it would not be quite so bad.

    Perhaps the 'powers that be' should realise that we have to eat to survive, but we don't HAVE to smoke or drink alcohol to excess, and yet smoking cessation aids are often free on px and expensive anti-alcohol drugs are also available on px. In 19 years as a GP secretary responsible for issuing repeat prescriptions there were far more of these issued than for GF foods!

  • I took my first prescription to the pharmacy today. I've recently bought a pre-paid certificate, so I'm hoping the service doesn't get discontinued before it runs out!

    I agree that the nhs seems to be overcharged for these products (although I do wonder if other pharmacy items have expensive delivery costs too - eg. short-shelf-lifed meds that aren't generally kept in stock? It could be a wider problem than just GF items...) I believe some GF companies have set limits on what they will charge for delivery. I can' t remember which ones, but I will be looking into it as I do intend to get regular prescriptions.

    I think it is an excellent point that we shouldn't 'max out' our GF allowance if we don't need it. I have ordered 14 units worth this time, but I shall see how long it lasts me. Maybe I don't need that much.

    I find supermarkets a bit rubbish at keeping the shelves stocked in the GF aisle, so I do worry that we might starve if it was left entirely to them...

  • i hope not as i am 67 and on pension so a grate help the bread is so dear and get few other things too but buy some goods

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