Hidden11 years ago

Hi Phil, here's a link to the article in the Oxford Mail:

oxfordmail.co.uk/news/94764...

What I do not understand is why the prescription co's charge the NHS so much and why the high delivery charges. When the cuts in the SE started a coeliac in Germany posted details of Semper wheat starch made by Juvela's parent company with identical ingredients and German coeliac can buy this codex wheat for 2Euro's and 40c which depending on the exchange rate is between £1.90 and £1.98 and they can buy it over the counter. And the NHS is charged over £6.50 for 500g of Juvela wheat starch + delivery. The fresh bread carries an even bigger premium for delivery the chemist also charges a £1.00 handling fee for each prescription (not each item)

I know that I don't get food on prescription but I do feel for coeliac who are affected by these cuts as I know that they must feel threatened so I am sorry folks.

sassyl in reply to Hidden11 years ago

Just did the maths in the article... £350,000 a year for 6,000 coeliacs. That's a whole £58 per person per year.

I had to check that a few times. Really? £58 per person per year is too much?

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meanioni11 years ago

Don't hold out any hope for CUK to reverse the change. My area East Sussex was in the first region to go down this route. Their argument was thin, along same lines as you have written (my guess it is a shared brief).

Thy clamped down and offered only "nasty" GF bread and flour. Nothing else.

I took this up with CUK and got them involved in the consultation. I wrote to my MP, local oversight committee and the Council in addition to the Primary Care Trust. To cut a long story short, it still went ahead and the only concession was to make Juvela non fresh baked bread available. I did write and suggest a change in the model to one where vouchers were made available which would allow predictable budgeting and cost reductions, but give more choice. This was rejected.

We argued CD was a genetic disease, the cure for which was a modified diet, so GF food could be seen as medicine.

I heard on the grapevine that the PCT were crowing about the amazing budget reductions their policy had resulted in. Ultimately sort term cost savings were deemed to be more desirable than public health and long term healthcare costs.

I do sympathise with one point though that they made, the costs for sale and delivery to NHS were ridiculously high and the providers were pricing themselves out of the market.

So I buy my own now

philaustin11 years ago

I do think the cost of getting GF food to coeliacs through the NHS is silly and some people in the chain appear to be taking the P. The German flour is a typical example.

Instead of cutting GF completely a better solution would be to offer a smaller range of basics like bread and flour on prescription.

Curently I can choose from a bookful of products - bread, flour, biscuits, pasta, pizza bases, guar gum, etc, etc. and personally I would be happy to just get the bread as I need it for lunch every day in the colder months when salad is so expensive.

I too feel sorry for those who would find it difficult to find the extra cost of buying GF foods, such as the retired, unemployed, and those with coeliac kiddies.

This wouldn't hit me hard yet, but it would if I were retired since everyone in the banking world seems to have shared my pension fund out between them to squander.

philaustin11 years ago

I have just read the article in the Oxford Mail Jerry, thanks.

The comments that follow it are even more interesting, showing just how important GF prescriptions are to some, and how ignorant some people are.

I recommend posting links to the article on all Coeliac sites so that everyone can see some of these comments. Then wait for the revolution to start.

One man, whose wife is coeliac, has gone into great detail in comparing prices and quality of supermarket GF food with the 'ordinary' versions.

Another person makes a valid comment about the time it would take to prepare an alternative gluten free lunch to take to work.

I don't like quoting Marie Antionnette because some say it was a misquote, but some of the responses to that article deserve a similar result.

Final thought. If GF on prescription is stopped, how about introducng a law that makes it illegal to put gluten into food products where it is not necessary?

Hidden in reply to philaustin11 years ago

Hi Phil, the comments were very interesting I was saddened by the ones against by non coeliac who had no conception of a gf diet. I was also deeply saddened by the ones against heroine addicts getting methadone on presciption and one in particular going on about druggie scum and tax payers money. I think if a heroine addict wants to come off heroiine we as a society should help them and if it stops one crime against an indidual then it's worth it. I also do not see the point in one group of people picking on another over who the cuts should affect. But it's always someone else who should face the cuts.

Your last comment is very interesting and I support it. But would the food manufacturer who is happy to make fizzy drinks for children that have a ridiculous amount of sugar. The same goes for salt and saturated fats. Saturated fats improve the texture of some wheat free foods and used extensively by the free from Co's.

I read a really cynical view of processed foods where salt was used to make poor quality food taste better abd make the person thirsty so then they wanted a nice fizzy drink and so the cycle goes on.

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meanioni in reply to Hidden11 years ago

Problem is because the cure is food, people get irate without really understanding the true nature of the disease.

Using their same logic, the NHS should refuse to treat alcoholics, smokers, etc. If GF food were a medicine, people would not think of questioning it.

Another point missed by the posters on that site was that in my experience it is not just coeliac disease, most suffer other ailments and allergies. I suffer from milk problems restricting my diet further. I don't have the option of day to day food and have to rely more heavily on free from foods and I do a lot of fresh home cooking.

The other thing is that with my job, I travel, sometimes away 2-3 days at a time. The "cooking at home" and planning ahead arguments just don't work then - I can't carry 3 days worth of fresh food with me.

Ah well....

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alifhp in reply to philaustin11 years ago

Hi Phil, like your thought pattern very much! Corn flour is cheap and can (if you cook) probably replace wheatflour in most recipies. If you start the petition, I will certainly back you. Ali FHP

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tmoxon11 years ago

For anyone who would like to sign the petition to stop the NHS from stopping the prescriptions here is a link epetitions.direct.gov.uk/pe...

Hidden11 years ago

There's also another petition recomending that the NHS stop prescribing gf foods and those on low incomes get an allowance:

epetitions.direct.gov.uk/pe...

This is just for members info. And there are only 138 signatures but it shows that there's a push in this direction.

I am not trying to provoke anyone or start WW3 with this just raising awareness of what's goin on. So please don't shoot the messanger. And I'm not suggesting anyone signs it...LOL

dumpy11 years ago

Dumpy,

I spoke to my Doctor yesterday and mentioned to her about Oxfordshire stopping the food,she was amazed and thought that it would not be allowed(I do hope I hav'nt put the idea in her head)I asked her if I could add Warburtons bread to my prescription as I had heard it was improved,she said no problem just leave anote with secretary with the pip code.I bought a white loaf later in the day to try it first as I did not want aboxful if I did not like it.Well are'nt I glad I did.I opened it this morning to have some toast and the top crust came off of every piece I took out the bag I am going to try a sandwich soon but I think it will be plate full of crumbs by the time I have buttered it and added a filling.Watch this space.

Maryelle11 years ago

I had my prescription cut last May.

What is forgotten is the reason we have the prescription, .

Because of the nature of this illness for the want of a better word, there is no medication to cure or help with symptoms, so the food was avalable instead.

We are not talking allergy but auto immune disease, any other disease that falls into this category would have treatment.............!

philaustin11 years ago

I didn't apply for GF on prescription for about 4 months after diagnosis, then it took a few weeks to sort out because our GP knew nothing about the recommendations ( products available, points system etc). So for almost 6 months I had to manage with lunches made from 'Free From' products plus the free samples I got from Juvela, Glutafin, and Coeliac group handouts.

If need be I shall go back to a tub of salad every day instead of sandwiches, I won't get any pies or cakes that my wife would make, and I won't have the occasional pizza any more. The GF crackers? They can stuff them because they are always smashed up when I get them.

It won't be the end of the world for me, but it will make it difficult for less fortunate people, which is wrong.

Coeliac UK will probably have a hard time because I bet they depend on a revenue from advertising GF products.

The GF food manufacturers will have a hard time and employees will be laid off, increasing the burden on the tax payer. They might be tempted to merge into a bigger company that can produce GF food cheaper and re-label it with supermarket labelling. There are too many small companies in the business chasing too few 'customers' at the moment I think.

My boss will bring even more chocolate covered biscuits into our meetings to taunt me, and the chap who works behind me will brag even more about the taste of good wholemeal bread and the crunchy batter on fish and chips.

Oh, and the staff at the surgery will be laughing behind my back.

Hidden in reply to philaustin11 years ago

Hi Phil, you have a very pragmatic approach so good for you. Now when you say about a tub of salad do you mean just salad? Because what I used to do before I started making my own bread was either cook some potatoes and have those with tuna/etc or I would cook some gf pasta and have that with tuna/etc. If you work in an office and have a kettle. Heinz make some soups in a sachet that you squeeze into a mug and just add boiling water. The other thing that you could do is have some instant mash with grated cheese etc. Instant mash is what they refine into potato flour anyway.

heinz.co.uk/ourfood/soups/s...

They do 4 and 3 are gf (the minestrone has durum wheat in it) and if you tried one and don't like it you could always accidentally trip over and spill it on the chap behind you...

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alifhp in reply to philaustin11 years ago

Yes, but when they are diagnosed with diabetes, heart conditions, high cholestrol, obesity etc, from all that yummy food - and you are still there eating your healthy salad, who will be laughing then. Just dress it with lots of tasty balsamic vinegar and olive oil !! Enjoy - Ali FHP

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philaustin11 years ago

I like your creative thinking Jerry. I meant 'just salad' (variants of lettuce, tomato, cucumber, celery, onion, pepper) with liberal dose of gf salad cream. I usually have a banana, apple and orange for breaks although that can vary.

A sandwich or roll is cheaper and quicker to make and eat though, as long as bread is on prescription. They are the only advantages as far as I can see.

I always thought that a diet should include the carbohydrates found in staples but if gorillas can live fruit and veg so can guerrillas.

Regarding soups, I went through a period of having packet soups when I gave up coffee. These were often Ainsley Herriot range - spicy mexican etc. when they were at knock down price.

We do have hot water. Great idea, Smash and cheese!

If only there were reasonably priced gluten free rice based add-hot-water snacks. That would be good.

As you intimate, pragmatism is the answer. If the problem changes, we shouldnt try to apply the same solution. Move with it and find a new one. Coeliac has taught me to be a forager, to think ahead and buy things when they are going cheap.

So the contents of the salad might change a bit now and again..

Spilling the soup; priceless!

Hidden in reply to philaustin11 years ago

Hi Phil, do you eat eggs? because as well as hard boiled eggs you can make Fritatta its an a variation of a Spanish omelette eaten cold:

cookuk.co.uk/eggs/frittata-...

I buy falafels and they also sell these but they add cous cous a real fritatta uses cooked pasta as it's an Italian version of a Spanish omelette. But you can add what you like and they're great cold.

I also bought Bette Hagman's Gluten free gourmet cook book and there's a recipe in there for a quiche that uses mashed potato instead of pastry and that slices just like pastry when cold and is great for packed lunch/pic nic. Basically you just line a baking dish with cooked mashed potato and blind bake it sprinkled with butter for 15 mins whilst you make the quiche mix mix and add that and then bake it in the oven like a normal quiche. I eat these cold with a salad in the summer a lot.

A variation on a theme, another interesting recipe that I came across is an American breakfast casserole which's basically baked scrambled eggs with bacon, tomato mushrooms. They have it Christmas morning and add fried bread sausages and cheese! so its more like heart attack food I add cheese and make it for supper sometimes and it doesn't half make the house smell nice on a cold morning/evening.

Lastly you're right being a coeliac makes us have to look at all options and think outside the box.

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Leothe14th11 years ago

My Health Authority area have reduced the range of goods I can order and have also taken away the extra 4 units for physically active work.

jaynewoolliams11 years ago

I just signed the peti

Also the best warburton bread is the whole grain one this is very good and a lot like 'normal' bread..I live in Oxfordshire so will let you all know if i hear any news

Jacks11 years ago

Am I reading this correctly -

"it isn't fair to provide food on prescription for Coeliacs but not for other people with DIFFERENT EATING DISORDERS." Eating disorder - that's really offensive. I wish I had the choice of whether to make this disease a lifestyule choice or not!

I agree - take gluten out of food and problem solved (and apparently a lot more).

meanioni11 years ago

The issue is with those on low incomes, I can afford to buy them but speaking to my Council about this (who supported coeliacs and disagreed with the PCT), they were worried that. Low income sufferers especially those with coeliac children might be forced to eat gluten.

On the other hand I've worked 24 years and paid taxes and N.I. In full and in that entire time only claimed benefits once - 3 days of dole money. So part of me thinks, huh entitled to something back!

HazelG11 years ago

Got to agree entirely about price but half agreeing with Bucks and Oxford too because I am not a coeliac and have wheat intolerance. wish there were a lower priced non wheat around but there isn't so have to use GF products but also have lactose intolerance, get quite ill if I am not very careful with resistant starch products(inc GF) so rye bread is out. Many more but the consequence of this is that I have had to increase my food bill by £40 a month. (GF bread, lactofree products, soya yoghurts, linseeds oat biscuits and quite a lot of veg to keep my bowels moving). Only help is prescription for laxative. I really wish I was as fortunate as you with just coeliac disease but I believe 20% of the population have IBS and some of them have a lot more than one substance to substitute. Only wish that we could all get an allowance (£5 a week would be nice for me) towards costs and perhaps buy in bulk as a cooperative, (we could get larger freezers for the bread etc) that might force the supermarkets to lower their prices for special dietary foods. Pity we are going back to post code lottery.

Jacks in reply to HazelG11 years ago

I don't feel "fortunate with just coeliac disease" thanks. I've had a lifetime of ill health because a well-paid medical profession managed to miss my diagnosis for decades, resulting in me having stomach operations, dermatitis herpetiformis, bone loss, refractory anaemia, recurrent apthous ulcers etc and now being told I am high risk of cancer. Like (apparently) 50% of coeliacs I have lactose intolerance (our lactase enzymes disappeared with our villi), so I also have to buy specialist lactose-free products or expensive enzymes that are hit-and-miss at best.

If you read between the lines on the forum you'll see a lot of coeliacs have some form of IBS even on our GF diets. I have to strictly food combine or I am in agony but this is because I have no ability to digest protein and starch in the same meal due to the lack of enzymes.

If you are this symptomatic you should go back to your gastroenterologist. Mine said there is no IBS without either (1) physical (eg pancreatic dysfunction, bowel obstruction, crohns, CD, etc or hormonal), or not drinking sufficient water - said this was probably 50% of those taking laxatives or (2) psychological causes like stress.

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HazelG in reply to Jacks11 years ago

point taken about lactose at least. not sure which group I fit into. I am not in the not drinking sufficient water category. I have at least 8 glasses of water daily plus herbal teas despite the urinary incontinence this produces. I will admit to some stress but the IBS is definitely controlled more with diet than stress management whatever the doctors say (first two months constant fluctuations between diarrhoea and constipation - now constipation largely controlled with mixture of laxative and large amounts of judiciously chosen fruits and veg) The point I was trying to make, apparently badly, was that only coeliacs get anything towards diet for just their gluten intolerance but that there are as bucks and oxford say others with equal if not more need to receive some sort of allowance not just for gluten free but other issues such as lactose intolerance. I have heard of people who cannot eat 20 odd substances. I am currently at 8 but need to test more. Just one thought on lactose have you tried soya products I find they work well for me. As far as those who are on low income I can sympathise I used to be on £600/month with lactose intolerance before the other symptoms started. shopping around is the only answer I managed to get all my food for £90/month then but it is not easy you have to lower the normals to get enough of the specials. Hope you keep well

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Jacks in reply to HazelG11 years ago

Not all coeliacs get or want food on prescription - it still contains too much gluten for many like me, but for those who can tolerate it it's provision apparently saves the NHS in the long run as they aren't flooding the cancer wards in the future. It's not free either - each item costs the price of a prescription or a prepayment certificate.

As I said I don't know how you can think anyone is fortunate having coeliac disease. The coeliac diagnosis is as a result of having several samples removed from the gut, but it is only when these samples are at a level of such degradation that we are told to adopt a gluten free diet or become seriously ill. No offence to your intolerances but unlike coeliac disease non of them are likely to kill you. Getting a coeliac dignosis is horrendous. Having coeliac disease and not feeling any better, despite avoiding anything grain-like (maltodextrin, dextrose, glucose, glucose-fructose syrups, and more) is terrifying as an older diagnosed coeliac. Before my diagnosis my heart stopped I had to leave my profession, I live on my savings as I am unlikely to need them in old age. If this sounds dramatic tell my consultant to stop talking to me about a likelihood of EATL.

As for soy - for personal reasons I choose not to use soy products.

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Jacks11 years ago

Don't you just hate the assumption that everyone lives near a bit Tesco or similar. I don't live near a supermarket that has a free-from selection - the nearest is a good 20 mile round trip, so I'm glad I don't eat it (though that's to do with not tolerating well). I don't have prescription foods but support anyone who does.

philaustin11 years ago

When the gluten free on prescription is cut, and I believe it to be inevitable now as the recession deepens, knowing how to eat well without gluten free foods will be important to thousands of us.

'Tony62' could have a lot of useful advice to give us 'junior' Coeliacs when it comes to eating without resorting to so called 'gluten free' food wether it be obtained on prescription or not.

I don't wsh to patronise you Tony, but you are a true 'gluten fee guerrilla'.

How about we all give the gluten free industry the bums rush?

DiabetesPower11 years ago

Hello,

As a mother of 5. Two have coeliac, 1 has Type 1. I treat all my girls the same and we eat the same diet. It would be really cruel to my girls with coeliac to see there other 3 sisters tucking into food they are not allowed to eat.

We currently get, bread, pasta & pizza bases on prescription. Since the girls have been diagnosed it has added at least £50.00 a week to our food bill. We are not on benefits. However it does worry me if we had to buy all our food from the supermarket as in my opinion it is far too expensive. Whilst trying to cut costs I looked at Sainsbury's own beans priced at 19p, guess what they had gluten. It concerns me that if people can't sfford to uy gluten free, they will start eating gluten, which will have a far bigger impact on the Health Care System.

Why can't the PCT's/Gp's use common sense, hold a few consultations in their local areas, establish what they could buy in bulk and then approach the stockist like Glutafin and get better prices.

meanioni in reply to DiabetesPower11 years ago

Because it takes too much time and they don't really give a crap. When we went through this in Sussex, a group of coeliacs lobbied the Council and we came up with suggestions for alternative approaches.

Bottom line was that they were not interested, all they wanted to do was save money,

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DiabetesPower11 years ago

Meaniono,

Sadly what you say is true, sadly they delude themselves as in the longterm it will cost more. The last nearly 4 years I have done nothing but fight for my girls health and the best treatments and services. It makes me very weary and sad. It will never stop the fight in me, probably give me more grey hairs !!

philaustin11 years ago

If GF food on prescription folds up, at MINIMUM we must still have gluten free bread on prescription for coeliac children, just as we had free school milk to make sure we got enough calcium.

dumpy11 years ago

Dumpy

I made my sandwich with Warburtons white sliced G/F bread and apart from not having the top 1 inch of bread including crust it was'nt too bad.I did find it very dry especially when I got near the end of the loaf,had to be careful as I nearly choked on one bite.Has anyone else had trouble with the bread breaking up now the recipe has been changed.It does'nt seem to be any different from the first time around to me.

1stgls11 years ago

I feel that some "stuff" could be removed from prescriptions my own personal feelings are that the luxury items should not be prescribed, such as the less than plain biscuits, specialised bread rolls, yes they are very nice but NOT required for good health.

Staples such as bread and flour should remain on script as they are horrendously expensive in the shops but neccessary for good health as they are a source of vitamens and iron and fibre----- but no-one will become ill through the lack of a boutbon/custardcream biscuit or ciabata roll

philaustin11 years ago

I used to have sliced GF bread and nearly choked on it several times because it was dry. Bedfore diagnosis I used to take dry bread sandwiches to work: good wholemeal bread with low fat turkey ham filling, and never choked on it because it was so moist even without spread.

I found the only way around the dry GF bread choking problem was to plaster it in spread, which couldn't have been good for me as a year later I was diagnosed with high cholesterol and have been on medication for high blood pressure since.

Regarding food on prescription I agree with bread and flour as a minimum as long as it is half decent bread such as Glutafin baguettes.

jackieO11 years ago

Going back to Phils original post about providing special food sto coelac but not others with eating disorders does not ring true. As a nurse I know of children and young people getting high calorie supplements for disorders that affect food absorption or increase calorie requirement e.g. Cystic Fibrosis or glycogen storage disorders, and low protien foods for other inherited disorders that seriously limit what they can eat such as PKU or MSUD.

Like other posters I really only use my prescription to get better quality bread than is available in the shops, pizza bases ever couple of months and occasionally some crispbreads. I do not use my full allowance of 14 units as I ended up with a stockpile of flour and pasta when I did.

I have heard in the pharmacy I collect from that some people really did take the mick and over order but as the system changed locally so that pharmacists control the prescriptions (apart form us getting a renewal letter once a year from the GP) it has really been tightened up.

philaustin11 years ago

Jackie, I had no idea about the special food provided for those other eating disorders. Thanks for enlightening me. Those problems sound much worse than CD. I also only order what I need at any one time. The pharmacy phones me if I haven't ordered the whole 16 points worth to check I haven't made a mistake. I prefer my salads to GF bread any day and whilst I am still working and can afford them I will have them except in the winter when salads become expensive. You have a great sense of responsibility. I wish everyone did.

1stgls11 years ago

In my opinion a lot of the gf free stuff on prescription is not necessary, it is my choice but I make my own biccies/ cakes/puddings pizza bases, I do not like the shop bought taste and textures, and they have a lot of fat in them.

however I believe that staples such as bread should be on prescription as it has a lot of good ingredients baked into it which we coeliacs would be short of if we do not eat it ( non gf people use ordinary bread to ingest their vits and minerals as well)

but I think the chocolate/cream biscuits/crackers should be bought ---yes they are expensive but it is only for one person NOT the whole family.