here in plymouth my GP has just informed me that I can no longer have biscuits on prescription. This does not bother me -- and I think -- (do not shout at me as this is my own personal opinion) -that this is o.k, as biscuits are ( in my house) a luxury item. -- I last ordered biscuits August 2012
i do feel sorry for the little old ladies who if they cannot face a meal will eat a biscuit-- they may just not bother eating and that is a bad thing
I do not know if this is the slippery slope. I eat 7 loaves of bread in a month and have 2 lots of flour, I will be destitute if I have to buy them.
Does any one know if the amount of "portions" we are allowed via a prescription is to also change?
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I am allowed 10 units per month. I am only allowed to order bread, pasta and flour; everything else has now been banned. If I want fresh bread on prescription, I have to order it in units of eight, thereby taking most of my months allowance :S
In my area kids are also allowed pizza bases on prescription - I'm in the West Midlands. All the rules were changed at the beginning of the year when the PCT was phased out and replaced with a Clinical Commissioning Group. I did try to lobby my hospital dietician about not being allowed to order savoury crackers on prescription but was unsuccessful.
I am expecting it to get tougher over the coming years as money in the NHS gets shorter and gluten free products become more easily available (although still pricey!).
To be honest I don't really have a problem with not being able to have cakes and sweet biscuits on prescription. I don't think these sugary foods should be funded by the NHS - the NHS spends a lot of money telling the rest of the population to cut down on eating these junk foods!
You and I are on the same wavelength, luxury items such as biscuits and cake ( did not know it was on prescription) are not a requirement to a healthy life,
I am just wondering if the powers that be are testing the water to see how many people complain about the tightening of the prescription perameters.
I like the savoury crackerbreads and bought 4 packs when Asda had them for £1.00 a pack!!!
Take heart ...at least you get something. Here in Canada we pay for everything out of our own pocket. I do my own baking...bread, sweets, pizza, pasta. It's very economical if you do it yourself. I buy my gluten free ingredients in bulk and save that way. Because I don't eat processed food, I figure I break even in the long run.
my Dr knows I can't eat gluten but because they lost my test and I was gluten free and feeling better while waiting for the results - they said I had to eat gluten for at least 5 weeks ..
I would be out of a job due to illness - I've explained but nothing!
I pay for everything too so I hear you Liana and I know it's not fair.
My story is similar ... however, I think of it as a life style choice and have no regrets. I do it because it keeps me healthy and I feel better. I don't need a label like Celiac Disease to tell me I can't eat gluten. My body tells me everything I need to know... really!!! It goes to war against me if I dare to inhale one crumb! I'm gluten free for life and I don't care what it costs ...even on a senior's pension.
Well said Lianam I couldn't agree more. I was always a healthy eater before, veg, fruit etc, but never realised my little treats were all adding up. That stupid slice of wholemeal bread with my salad Grrr,
But yes happier now
Take care - and no I don't give myself a label either
Hi, is gluten free food readily available in canada? my son is due to visit Vancouver in October on a school trip - he is gluten, wheat, nut, soya and sesame free. I need to collate food info for school (what he can and cannot eat) to send to host schools
Hi... as you know, Canada is a very large country. I live in Ontario, which is as far from Vancouver as I am from the UK. What I would suggest is that you contact the Canadian Celiac Association celiac.ca/ and the specific contacts in British Columbia, where Vancouver is located:
British Columbia
Vancouver
Events
Email: info@vancouverceliac.ca
Phone: (604) 736-2229
Toll Free in BC: (877) 736-2240
Fax: (604) 732-8444
Mailing Address ONLY: 360-1385 West 8th, Vancouver, BC V6H 3V9
Mailing Address: 994 Tronson Drive, Kelowna, BC V1Y 4E1
Here in Ontario, food allergies and sensitivities are catered to by many restaurants and most grocery stores. It's always best to plan well in advance.
I moved to Stockport over two years ago from Lincolnshire where I could have anything and with my old GP as much as I wanted.
Here in Stockport we are restricted to longlife bread and flour only. The PCT relented somewhat last year and allowed pasta.
Myself, I don't mind, in principle the restrictions as one normally can make fresh bread, cakes, biscuits etc from the flour but I find it a real challenge because I am disabled and need someone to do it for me.
I cannot stomach the longlife stuff and find that supermarket fresh bread to be too expensive and the cakes, biscuits far to sickly sweet. I did used to enjoy the occasional sweet prescription biscuit, but hey ho - such is life...........
This is an issue that has been working its way around the UK and started in Kent. Because of the way my Coeliac Disease is I have a restricted prescription because I have to go by ingredients not by the GF label. What is left? (prescription)crackers, pasta's & two types of biscuits. There is very little available to me on the Free from shelves so I have to have fresh ingredients, not cheap but a healthier option.
When I was first diagnosed there was no choices only complete wheat avoidance so todays coeliac is much better off and should be thankful that something is available to them.
I don't claim my prescription items I never have nor for my 2 children, now don't shoot me down it's just my opinion, but I don't agree with it, it's an in necessary burden on the NHS and not having it would drive better availability, choice and cost down in the supermarkets. For years a small number of GF suppliers have exploited the nhs system, providing terrible quality items at high cost to the nhs and now it's coming back to bite them and they are finally investing some of the profits back into their products to compete with the new innovators and the market is exploding with good quality alternatives. Coeliacs and those who have a non immune response to gluten should be able to get items like anyone else and the nhs should have just subsidised staple items back to a similar price to their GF counterparts in the supermarket via vouchers much like the fruit and milk voucher system. In the last 5 years the availability and choice and more importantly the quality of GF has got dramatically better, it may coincide with celebrity fad diets excluding wheat?, i digress, Asda now do a large sliced loaf for £2, I can buy staples from my local coop, marks and spencer and coop are now substituting ingredients to make items that don't need to contain gluten, but did, GF - this is a much better option than getting stuff on prescription and eventually one would hope that the cost of these items becomes comparable too. Bring on the days where us coeliacs can do a normal weekly shop like everyone else!
Nb and before I get accused of being money bags, I'm most certainly not rich either, it doesn't have to be expensive, I spend c. £70 per week on feeding a family of four, I meal plan and cook from scratch and i use more substitutes (rice, beans,lentils) than buy ready made e.g. we don't buy GF biscuits or cakes we bake them. I do buy a bag of pasta (£2) and 2 asda loaves (£4) but the rest is homemade.
Maybe it is the area as I can get nearly all items on prescription. I now make my own cakes and buy supermarket biscuits. They are expensive,so i8nstead of eating a wholepack of cheap ordinary biscuits, I limit myself to one or 2 now and then with coffee. I can recommend Asda Supreme Golden Crunch, and Mrs Crumbles Choc Coconut Macaroons.Asda is cheapest place for macaroons. £1 a pack.!!!!!!!!!!!
Here in Italy where i now live all coeliacs have a monthly allowance of 90 euros to buy coeliac foods. It is up to you to choose and the only thing you cannot buy is GF beer. I think it would be impossible now for me to live in the UK. However, it has to be said that most GF products are still very expensive so a packet of two very small GF baguettes is 4 euros and a packet of 250g of pasta around 4 euros. If you consider the average Italian coealiac would eat pasta very day and use 2 1/2 packets of pasta a week and 7 baguettes this means that most coeliacs here still spend most of their money on bread and pasta. However, there is a lot of choice and a wide variety of frozen pasta, various flours rice, buckwheat, maize, chickpea, and an all round mix for pasta and bread and pastry etc you can shop around and make your 90 euros go a very long way especially if like me you don't eat bread or pasta except on a rare occassion.
Thank you I assume it's a voucher worth 90euros then! Much better than prescription system, much like our healthy start vouchers! Are there any other qualifying criteria like income or is it all coeliacs?
Plus we are encouraged to try new things and breakfast here for all Italians is a slice of cake or biscuits with a cappuccino not cakes and biscuits as snacks. so the aim is to try and give coeliacs as normal a life as possible
I would like to see a voucher system to replace precription items.
Our local PCT has 30 items available for prescription, 11 long life and 8 fresh breads, 2 flour mixes and a selection of dry ingredients from Innovative Solutions. The fresh breads are only available in cases of 8.
I think it is difficult to create a workable list that suits all age ranges and all types of person/personality of coeliac. The op is quite right saying that some people would see a biscuit as a staple, but that right to choose is taken away from them. Whilst I understand the existence of the obesity and diabetes problems in the UK, I don't think that coeliacs are the best group to use as an example of best practice in healthy eating.
There is no getting around the fact that safe gf food is substantially more expensive than its wheat containing, or untested counterpart. It would be nice to see that acknowledged, which a voucher system could do. The vouchers could be used on savoury products (yes, including gf ready meals, pizza etc), breads, pasta, crackers, biscuits, cereal etc but perhaps not cake or gf chocolate?
I think Henbur has hit the nail on the head. The current system has distorted the market. The protectionism of the old arrangements deterred innovation, discouraged improvements and lined the pockets of some pretty incompetent food producers. How else could they have made a profitable business out of such horrible food?
In a free market where they have to compete on the normal basis of taste, quality and price, let's face it some of the older products will deservedly vanish. Remove the market distortion of prescription food and the products available will simply explode in terms of choice and quality, because they will have to, and the normalisation of the funding for it will push prices down.
This would be better for everyone in the long run. For it to happen now while GF is also a "fashionable" diet choice for some would be ideal, as food manufacturers will want to exploit the trend the same way as happened with veggie food and organic.
Financially there are two easy routes. Not vouchers, which will be limited, cumbersome, bureaucratic and open to fraud. First, for those on incomes over £10K, lobby for a tax code allowance like the blind person's tax allowance. Second, for those on low incomes add a food bonus into benefits/universal credits.
These solutions would enable us to continue to have it recognised that CD is a medical condition with costly consequences, but allow us to make our own choices. My own mother eats the most vile prescription bread, which if I made it myself I would put in the bin. Why? Because the system currently treats us as supplicants and subsidises horrible rubbish making the better products more expensive retail for people like me that don't use prescriptions.
Scrap it now! Your pharmacist will love you for it!
Brilliant thank you for understand what I meant and explaining it a bit more eloquently. I think the tax code and benefit system is an excellent idea my only concern would be that it might be subject to exploitation by a minority who would spend it on other things. as an example I regularly used to see my local corner shop take healthy start vouchers in exchange for other things including fags! Needless to say he has now been reported, but if you put the cash in people's pockets how do you make sure it is spent on GF I wonder?? I still think an injection of cash into the gf food chain in exchange for reduced rsp would actaully reduce price naturally long term as people who weren't coeliac also bought the goods and drove volume up. Overtime the scheme would fund itself and the government could pull away?
Hi Henbur, I'm glad I'm not the only one who wonders why the prescription system survives!
I think in a liberal and democratic society anything given to adults to subsidise their living costs should be theirs to spend responsibly or otherwise as they see fit. If someone chooses to live off chips so they can buy fags, you know what, I don't care, by comparison with the intrusion and control over normal responsible people which is foisted on CD sufferers by the current "nanny state" system.
99% will choose to be healthy and responsible. I believe that public policy should not be dictated - and at high bureaucratic cost to all taxpayers - by the 1% who choose not to look after themselves.
And I totally agree, any government cash or subsidy given to GF manufacturers ought to be focussed into dietary research and product development, to encourage further growth and innovation. That's what will improve the cost base of the industry in the long term and bring down retail prices.
I also think, being realistic, that long-term NHS support for any prescription foods is questionable at best. Why CD and not, as you've pointed out, people with dairy intolerances?
Finally, It is perfectly possible for anyone to eat cheaply GF or otherwise if they cook from scratch and don't buy processed foods. All you need to do is break the instinctive, easy reliance on bread and use very basic skills. There was some girl in the papers and on TV last week, who's got a book deal for feeding a family on £10 a week, and she communicates very well that people need to change their mindset.
I've broken my reliance on bread - it's taken a few months but I've probably got more variety and interest in my diet than I did before.
I would also be in favour of a voucher system. I love seeded breads and you just can't get a decent one on prescription where I live, but I do find them available on the supermarket free from shelves. I personally think Asda do the best tasting one. A voucher system would also allow me to have savoury crackers at a reduced cost.
For now I count myself lucky that I can have any prescription products - it makes my life easier since I am currently on unemployment benefit (but for not too long I hope!).
It is up to the CCG/PCT in each area what they will fund. Some consider it important to continue the service, others don't.
Hi 1stgls, I am also Plymouth based but have not seen any changes to my prescription as yet. I think I have been very lucky so far as I seem to have been able to get the full unit allocation with no restrictions (though I have never attempted to get biscuits/sweet treats as this never really sat comfortably with me either). I have been noting the changes that have been happening in other PCT's and have been waiting for some cuts to be made in our area if I'm honest. I actually prefer many of the items that I can get on prescription to the supermarket varieties, and they are often fortified too so are better for you. I will be watching the situation with interest. Incidentally, I also run a Plymouth based coeliac blog called Gluten Free by the Sea in case it is of any use: gfreebythesea.me/
I've now been restricted and for a while we were threatened with not being able to have fresh bread, which fortunately didn't happen because I found that anything with psyllium husk in makes me really ill. This ingredient does seem to be in virtually all gf breads available in the supermarket.
I read somewhere that NICE were doing a review of gluten free prescribing across the whole country at some point this year and were going to review in general how they were going to manage coeliac care. I think it was supposed to be sometime in the summer.
I have only been diagnosed for a year and it was quite interesting going through the system initally to see who makes the decisions on gluten-free prescribing. In my area it seems to be the dietitians who govern what you get. If the dietiitan writes to the GP to say you need something even if you haven't asked for it then you get it as was the case with my own prescription. I was horrified on the initial prescription to receive 12 loaves of Genius bread this turned out to be a mistake from the pharmacist who didn't care because I had purchased an NHS pre-payment certificate and he could claim the money back from the NHS anyway. With things like this going on probably many times the bill for GF food must be huge!
I have always tried to find out from the GF food suppliers how much an item will cost the nhs before I request it particularly horrifiying was a packet of crackers which cost £4.87 I was told was due to the specialist manufacturing process. That cost is too much for the NHS no wonder that manufacturer doesn't sell their stuff in supermarkets.
There also seems to be a culture of having as many units as you can get. I was allocated 8 units initally but I would have to go some to eat all that in a month let alone having the recommended 14. I now ask for 5 units a month and buy the rest of the things myself.
I am expecting that things will be cut further and I have been surprised that the NHS funds this food at all. I am also surprised by the fact that the NHS funds some of this stuff when it contains a lot of transfats in the ingredients lists. I would have expected them to have queried the ingredients before it was added before the food was added to an approved list.
The bottom line is that 'it is a huge ask to expect someone to eat gluten-free for life when it is so expensive' so I think that prescription foods were introduced to make health professionals lives easier and patients more compliant.
Since my son was diagnosed with food allergies last summer, gluten, wheat, nuts, soya and sesame, he is not coeliac but has to follow a strict diet. Following a consultation with his dietician we were given a prescription for his bread, flour and pasta. I rely on his prescription as it means I don't have to worry about affording these items, nor do I have to worry about running out and him doing without. GP did question his script once and would not release his bread - they wanted to know how much bread he was eating! He is now 13, food issues started when he was 12, his tiny 400g loaf does not go far, 2 slices of toast and a sandwich for his lunch quickly dispenses of a loaf.
I would hate to not have these items on prescription, knowing that they are being provided means that I can use my money towards buying other safe foods for our home - mostly I eat the same as him, minus the bread, because as a lone parent it is much easier to cook/bake one set of meals though I do use separate spreads etc. to avoid cross-contamination. Prescriptions have been the best thing to happen to us and it means that I am less stressed when I have to trawl the supermarkets looking for foods safe for him.
I think you have read my post and made some wild assumptions tbh, I did say that myself and my 2 children are coeliac so 3/4 of our household. I have also recently been made unemployed so I too feel the pinch! As i said i tend to meal plan and cook from scratch and this allows me to stick to a strict budget, from a 'free from' perspective i buy 2 loaves and 1 bag pasta per week this costs £6 the gluten equivalents we would buy if we could would be £3.70 so I am paying an additional £2.30 per week, plus maybe £15-£20 per month total on GF raw ingredients like flours etc. the initial outlay is high but over a few months you'll build stocks up and then replenishment costs are much lower. I have no desire to feed my family 'processed ready foods' like the ones you mention as they are still full of crap like their gluten counterparts, so I wouldn't have the faintest clue as to whether you are right about availabiltiy or whether my stores have more or less shelf space than yours, I also know that the government believes these processed foods to be partly responsible for our obesity epidemic and are looking at market measures to reduce this e.g. Placing such foods in a high tax category, on this basis I see nothing wrong with coeliacs having to buy them out of their own pocket as well. As an example my father in law is diabetic, his gp doesn't treat him to diabetic chocolate and cakes on prescription because they are more expensive to buy, my friend has a dairy allergy and she doesn't get soya milk and cheese on prescription. On a more serious note a colleague of mine had terminal cancer and she couldnt get a spcific drug because she lived in the wrong postcode, i would much rather buy my bread and see funds go to life saving drugs than cost the nhs almost £10 for a loaf i can buy for £2. Being gluten free is an unhealthy choice nor should it leave you deficient in anything, There are lots of GF substitutes readily available and it's not all about bread and pasta, think rice, lentils, all the other varieties of beans and grains, they aren't necessarily in the GF aisle these are standard foods and staples in many parts of the world so venture out of the gf aisles and even the boring mainstream supermarkets and venture into your local Asian supermarkets (or try Asian supermarkets on line, if you plan to buy these items monthly instead of weekly you avoid postage costs). Youve only been diagnosed for 4 months and believe me I know from experience that it takes a lot longer than is to get your head round GF and all the options available, I've been doing it years and am still learning, my advice would be invest some time on the Internet looking for recipes and tips, there are loads of bloggers who publish brilliant recipes - bread is hard, im not master baker either lol so i still do buy the asda loaves for sandwiches, but small rolls, tortilla wraps, various flatbreads etc. are much easier to make and arent brick like, pizza dough takes minutes to make and is really tasty. If you want any help or support just shout I'd be happy to help! Good luck
I agree with you, I would not expect to get food on prescription, as there is plenty of food at the supermarket, and as you buy less crap processed food you can afford the gluten free stuff, not that all gluten free food is over priced.
And fruit, meat and veggies are all gluten free, so no extra cost there.
I would rather the prescription money go on life saving drugs and advancement in medicine, maybe even a vaccine for Coeliacs and Diabetics
In my area I can have anything I ask for from the prescription list although I know many other PCT's limit what is available and entitlement to it however Coeliac UK are fighting hard to persuade PCT's to reintroduce fresh bread in particular.
The 4 big supermarkets locally have cut their "Free From" shelf/freezer space drastically (even in the 4+ months since my diagnosis) therefore initial stocks of bread products are low to begin with and disappear quickly leaving shelves empty for the remainder of the day. As you probably all know "Free From" shelves/freezer space cater for other food "allergies" too not just GF products (NO! NO! NO! before you misunderstand, I am NOT implying Coeliac's disease is an allergy but other food stuffs for lactose/dairy allergic folks are also on the same shelves) so space is limited for GF products at the best of times and these space reductions are not helping.
Whilst there are some who are, not everyone is a wizard baker with GF flours - me included and believe me I have wasted much money and time trying to make palatable bread products - not liking any of the brands available in supermarkets nor the prescription only brands - as a result I do without most of the time except when desperate). However for non wizard bakers at least supplies of fresh bread are guaranteed on prescription (when your PCT allows it of course).
As for the sweet ranges available on prescription in some areas which started this whole thread whilst I sympathise with 1stgls and others like you (I did not eat much sweet stuff pre diagnosis so for me it is not an issue) I have noticed in Morrison's for instance they have hugely increased their GF "sweet" range and there are many many such products available in other shops too - more so than savoury products. But I did not look at prices having no intention of buying so I do not know how much more expensive than normal "biscuits etc".
For varied reasons I think that GF prescriptions should be available to anyone who wants to use them. Being a cynic where government spending is concerned, I doubt very much that any savings accrued by stopping them will be used to improve financial problems elsewhere within the NHS - sadly all it is likely to do in these cash strapped times is reduce the NHS overall deficit rather than the saved funds be diverted to other areas such as the well publicised postcode lotteries regarding treatments for life threatening illnesses referred to in a previous post in this thread.
I sympathise and know it's easy to feel like that when your only 4 months in because all you can see is the cost of the GF item vs what you are used to paying for the equivalent. Same goes for taste, your palate is used to the gluten version and the gf version definitely does not compare initally. As time goes on you'll forget the foods of old and move into a new style of eating or else youll forget the taste of "real" bread and just yearn for the taste of bread and appreciate the GF alternative on offer. I can honestly say that 6 years in my eating habits are much broader, more adventurous, a lot healthier and my shopping bill is less despite having 2 kids (also gf) to cater for. I no longer buy ready made, unhealthy, convenience food in any way shape of form. Before I went gluten free I could barely cook a spag Bol, now I love cooking and accept failing in the kitchen as part of the journey - well just because you have to LOL.
The prescription debate has been live now for a number of years and when i was first diagnosed i was the same as you. Having seen both sides of the debate evolve i now see the prescription system as more of a a burden, restrictive both to the economy and the free from market. Coeliac Pescriptions cost the nhs £27m per year, a significant portion of the cost is admin and delivery not just the base cost of the item. A loaf of bread that costs £2-£3 in a supmarket will cost the nhs between £7 and £10. In comparison fish fingers which have never been on prescription are cheaper than the gluten equivalents and similar applies to sausages - i can now buy 'normal' sausages from the coop and m&s because they have taken the unnecessary gluten out. This would not be the case if these items were prescribed. The nhs has been challenged with £20bn of budget cuts which means that there is a very real possibility that non essential surgeries like hip/ knee replacements and cataracts will be cut. I ask any coleliac if they were left with severe sight impairment that you couldn't live your normal life e.g. Drive or that you couldn't go about your day to day business because you weren't able to walk much further than your front gate, would you swap your loaf of bread then? The nhs needs to make tough choices or it to probably wont exist in a few years time. When i referred to the postcode lottery i was merely suggesting that the nhs should not be providing non essential services above the needs of the terminally sick, i realise it may be ideological to some, but I honestly dont expect the nhs to provide my daily bread and i would rather lose my GF prescription than lose access to the life saving service the nhs provides.
In the 60s when the system was implemented the GF market was very limited in choice, this is not the case today and I wonder had the prescription system not been instigated if we would even be having a debate about the so called need for it today given the variety of other foods readily available to supplement our diets? Interestingly they also looked at the geographical splits concerning availability and there was a correlation between poor availability in supermarkets and a higher number of coeliacs using solely the prescription system, so I'm sure if the prescription system goes the supermarket shelves will be restocked again and as volume goes up one would expect over the prices to come down and there is evidence of this over the last few years as people have started to buy more GF products off the shelf.
Incidentally, im not tergetting you personally I'm just answering your references to my previous post and I do feel passionate about this debate. However, I do know what it feels like to be newly diagnosed, coeliac is a minefield but it doesn't necessarily need to be a money pit, as I said before if you want a few pointers I'd be happy to help and the guys on this forum are always around to give advice and support when you need it
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so I hear you Liana and I know it's not fair.
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