The Coeliac scam
I have from time to time written about the coeliac disease outrage. Anyone diagnosed as having gluten sensitivity is entitled to free prescriptions for the rest of their life for gluten free food. Courtesy of the taxpayer. Most (not all) gluten free food is more expensive than “ordinary” food. Big Pharma and their clients dine out on this big time. One of the leading suppliers is Juvela. They have a website devoted to flogging their goods.
OK, I am not suggesting that patients with coeliac disease should not have some support from the NHS in case of genuine financial need - though frankly I can think of more deserving cases. But like all family doctors in the country I am both cynical and angry about repeat prescription demands like this:
Full details here
- Juvela Gluten-Free Lasagne 250 grams x 2 £5.80
- Schar Gluten-Free Grissinis Breadsticks 150 grams £1.95
- Wellfoods Gluten Free Burger Buns 4 Buns x 7 £19.95
- Schur Gluten Free Pizza Bases (2) 150g x 14 £70.00
- Glutafin Pasta Spirals 500g x 4 £22.76
- Glutafin Gluten-Free Crip Bread 250g x 3 £11.82
- Glutafin Macaroni Penne 500g x 4 £22.76
This is an abuse of the taxpayers. It is the sort of approach to healthcare that is bringing the NHS to its knees and preventing more resources going into, for example, drugs for the treatment of cancer. Have a Grissini.
You may agree. You may not. The writers on the Coeliac Message board do not. They are outraged. They think they should have life long freebies. Take a look at their views here. What a shame they do not discuss it in a more open forum.
Labels: bringing the NHS to its knees, coeliac disease, freebies
70 Comments:
I couldn't agree more Dr Crippen. I regularly get prescriptions for a dozen loaves of two or three breads, a similar amount of various pastas, bicuits, etc. One of my patients has £500 of gluten-free stuff a month!! He has a medical problem I hear you say...
Well, in that case, how come a large proportion of his items end up on Ebay. (He left on the dispensing labels and the purcaser contacted me)
I have another guy who has twelve packets of biscuits every three weeks. Does he live on them, or something?
Plus, the oldest scam in the book. Patient gets Rx for, say, £500 of items. Pharmacist gives him £500 to spend on anything, even those gluten-free items on the blacklist in the drug tariff. christmas cake and mine pies all round!
Rather them than me, it's bloody horrible tasting stuff :)
I'm not sure what the answer is. More sensible pricing, definitely. Then the patient can go to Tesco and buy it instead of bugging me about biscuits.
I was also wondering how much of that prescription is ending up for sale on ebay, although I wonder if the burger buns are being used as a n alternative to bread as often the gluten free bread is completely unpalatable.
However, not all those with gluten sensitivity are so selfish or capable of eating so much!
I don't have an official diagnosis of celiac disease as my (sensible) GP felt it was an unnecessary risk to put someone with EDS through a biopsy to prove something we already knew. I'm quite sure that if I were to ask my GP would prescribe gluten free foods for me, but despite being unable to work and therefore relying on benefits I buy any gluten free food I require.
Disability Living Allowance doesn't cover all the additional expenses incurred by people with disabilities and I'm not sure it ever has done, but things like gluten free food strike me as one of the expenses DLA is intended to cover.
Bendy Girl
I believe that patients with coeliac disease should have some support for their diet - if not compliant with the diet they have terrible symptoms and are at risk of severe complications like osteoporosis and cancer - compliance is more likely if the cost of the food is not several times more than normal food.
I would be delighted to know which GF foods you have found that are not more expensive than the ordinary food equivalent - my family tries weekly and fails!
I also have to take issue with your comment on the other board that coeliac disease is a "food sensitivity" - sounds a bit too like "food intolerance" (which is mostly wibble) - but I know that you know there is a real immune mechanism here which causes real damage to the bowel. And I know that you know that this condition is a spectrum like any other but can cause severe diarrhoea, vomiting, abdominal pain, bloating and iron deficient anaemia unless a very strict GF diet is adhered to - and you know that even the smallest slip with gluten can cause rapid return of symptoms and then a long recovery period.
I agree the current system is not ideal - every time I have to do the GF prescriptions! - and think better systems should be in place ?voucher scheme ?pharmacy managed.
I would also say that if you are prescribing this much (and esp if myhunnybunny's patients are getting that much) then I might suggest you are failing in your role as GPs to properly manage these prescriptions. There are clear national guidelines that state what kinds of foods should be prescribed (staples - not hamburger buns or cakes) and what the amounts should be prescribed monthly based on age and sex. http://www.coeliac.org.uk/documents/gf_foods_a_prescribing_guide_full_1.pdf
You know, you could put it in your PDP as a Doctors Educational Need and discuss at your appraisal - I know how much you enjoy them! :)
Frankly, with 2 coeliacs in the house, I would love to be able to buy the equivilant to the prescription bread/Flours in Tesco's - but you can't.
The prescription bread/flour is infinitely more palatable (if that's possible)
I do BUY pasta, cereals, and crackers for my coeliacs in Tesco's....sometimes even an occasional (*gasp*) pizza base.
.....anyone know WHY is Juvela soooo very dear???
I know gf foods are generally more costly but holy mackeral!...the prices of Juvela foods!!!!
I did actually enquire if I could buy Juvela products from my pharmacy (as opposed to the whole rigmarole of prescriptions) but when I was shown the price list I'm afraid I had to resort to draining my NHS!
I get 12 packs of GF pasta, on prescription, once or twice a year and otherwise just avoid gluten-containing food. The GF pasta is absolutely fine if you don't overcook it, in which case it turns into wallpaper paste.
I reckon a move to limit the amount any one person gets is reasonable - it would nudge people to explore non-prescription options and would lessen theft (getting it on prescription and selling it on e-Bay).
The pasta I get is labeled "Keep out of reach of children"...now I can understand that label on GF bread ):
Thanks for highlighting how suppliers of these specialised foods are ripping off the NHS (and therefore the taxpayer) big time. Yet another example of why the NHS is in urgent need of reform. As "benefitscroungingscum" suggests, the costs of these foodstuffs should be covered by means tested benefits. Why should a coeliac millionnaire get this stuff on prescription at the same cost as someone on a modest income?
Anyone diagnosed as having gluten sensitivity is entitled to free prescriptions for the rest of their life for gluten free food
Coeliac.org.uk says the prescription items are not free (unless the patient is exempt for other reasons) and that normally there'll be one prescription charge per food item.
and note luke's comment.
I find this difficult because I live in an area of England where a lot of people don't eat gluten anyway without being on any special diet. Most people in the world don't have any wheat in their diets.
I lived without gluten for a few years until re-diagnosed, and I found it dead easy. I made my own roti at home and ate rice, gram, maize and millet. In particular, rice is easy to come by and not expensive.
Jayann
Quite right too. Sorry. To coin a phrase, I "misspoke"
Of course, they are entitled to have each item on prescription and, yes indeed, there is a prescription charge for each item.
BUT
I don't have the precise figure but many coeliacs are exempt from prescription charges. Those who are not, can buy a prepayment certificate which is £102 at present. Then there is no further charge for prescriptions for that year.
John
I am not a coeliac, but I take my health and fitness seriously. I would not eat cereal grains if you paid me.
Why on earth these people feel they need substitute cereal based foods when there are so many other foods available I have no idea.
A ridiculous situation which must end now more and more people, apparently, are being diagnosed with coeliac disease. The cost of substitute grain products is going to start affecting patients with more urgent needs.
I've never seen so many selfish ill-informed comments, and I am so glad that you aren't my GP. I kind of assume a level of compassion in GPs, went with the territory I thought, but clearly that's not the case.
Clearly you are missing the point.
The prescriptions are intended to ensure that people get a proper, balanced diet. The cost of GF food (which is quite frankly awful) in supermarkets it's prohibitive to many people - eg £2 for 4 crumpets. So-called healthy lifestyles, and grain avoidance is fine if you can a)cook and b) afford the rip-off substitutes.
There will always be people who take advantage, I can't begin to imagine how many prescription medicines mount up in people's cupboards, and ridiculous practices like prescribing of paracetomol etc which are just pennies now in shops.
Come on Doc - get a grip and spend your time griping about things that really matter, I suspect that if your diet was a limited as those of us with CD you'd perhaps be a litle quieter...
No one, but no one has yet explained why CD sufferers should get virtually free food for life, at a cost of millions to the taxpayer.
Why should, say, a solicitor with CD who is earning £300,000 a year have free food?
It's crazy.
How can anyone argue that this is an appropriate use of taxpayers' money?
John
There are several possibilities aren't there?
(1) We could devise a scheme whereby patients with biopsy-proven CD (not just "wheat intolerance") have vouchers that are related to age/sex which would cover the price differential between ordinary food and coeliac food.
(2) We could pass over GF prescribing to pharmacy as they do I believe in Northamptonshire - no drs getting knickers in twist over prescribing biscuits and pharmacists are much better at limiting prescriptions than it would seem some doctors are. As I have said, I think that if patients are being given a basket full of food frequently then it is the GP's fault for prescribing it.
I believe CD is a disease with a fairly equal age/sex/social group distribution - so I don't know why there would be more people with free prescriptions than the rest of population.
"What a shame they do not discuss it in a more open forum."
Crippen, I don't care what YOU think about perscriptions for coeliacs. What I am concerned about is that fact that you put a link to a message board that a lot of coeliacs find extremely usefull. If you'd bothered reading the posts before you started your crusade you'd have seen no reference to NHS scams, how much you can get out of NHS perscriptions and the like. However you would have found references to recipies, CD friendly places to eat, what is or isn't GF and other CD related info and advice. Many coeliacs find the board very helpful, I know I did when I was first diagnosed.
So thanks for that, bring your mates along and start ripping the place up by having a pop at coeliacs.
I think that Dr Crippen is making a very very valid point, and in fact misses a bigger fact that the majority of 'gluten free' food available on prescription is low gluten wheat based. This is why it is so expensive as the wheat is washed repeatedly in solvents to remove the bulk of the gluten hence it's outrageous cost of £5.00 per small loaf. If you are a sensitive coeliac this prescription food will make you ill, the charity for coeliacs is in fact a company sponsored by the wheat starch industry, so Dr Crippen I wouldnt concern yourself with the outrage from these poor misguided souls, as their 'strict gluten free diet' courtesy of the NHS is in fact laced with gluten. The UK is the only country in the world that lets coeliacs have prescriptions for food, OK they have to get a season ticket so it's greatly subsidised and not free unless they are on FIS etc. I think that it would be much better if coeliacs could buy all their own food rather than the pallava of having to get a script and then collect the script from the chemist, it's not exactly the norm for buying food, so without prescription food we could see a proliferation of wheatfree gluten free bakeries and cafe's across the country which would be good news for the coeliac, good news for the NHS, good news for family and friends of coeliacs (as they can't get food on script from the chemist) bad news for the low gluten charity and bad news for the low gluten wheat starch industry. If any coeliacs don't like what I'm saying then go and have some nice low gluten wheat starch toasted with yummy low gluten marmite on it, and wonder why you have IBS...
A SillyYak
I'm horrified as to how many self obsessed, uninformed, unempathetic people are on this blog that clearly just like to hear the sound of their own voice, and have no knowledge of the subject on which they rant - particularly 'A silly yak'.
Needless to say this URL will no longer darken my laptop.
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Hi Seejay, I am a ceoliac so I speak from experience, and am airing my opinion. I think that you obviously feel threatened by the facts, so please don't get personal with me, as all I'm doing is expressing my opinion from my experiences as a ceoliac, who strives to avoid all gluten for the benefit of my health, Thankyou, A Sillyak
I'm a coeliac and have only once bothered getting prescription GF food. If I knew I could go to my GP and pick up £500 of groceries a month and then sell it on e-bay I'd go and get some more. But there seems to be a few flaws in this scam, people who require GF foods get it on prescription anyway, and as has already been stated by yourself "it's bloody horrible stuff" so why anyone else would want it is beyond me. You'd also need to know a GP who was such a pushover you could demand a prescription worth £500.
Also the other scam you mention (oldest in the book) about patients and pharmacists being in cahoots, surely this applies to any prescription, why's it just coeliacs who are up to this? If I were the criminal mastermind behind this one I'd get the GP in on the act too, I mean why stop at £500 make it £1000 no £10,000 and split we'll it 3 ways.
Any prescription can be misused - for example I have some people who have prescriptions for diazepam (valium) and some who get viagra. At the end of the day I have no way of knowing whether they are using these themselves or selling them down the pub.
My friend who has coeliac disease eats better than anyone else I know. Whenever I cook for her, it's not much of a problem though some unanticipated things like soy sauce are on the avoid list.
I think what's being unsaid is that there's a certain kind of person who fully relies on free-from-type products.
missbliss,
I don't think you really understand the how difficult it is to stick to a GF diet, it's not just a few things like soy sauce. I think most coeliacs rely on the free-from foods. Yes possibly for convenience but then again if you work all day do you really want be cooking at least two meals a day from the ground up? Please remember that coeliacs can't just have a subway sandwich, or a greggs pasty or whatever, when they can't find substitues or don't have the time.
I was working last week (labouring on a building site), and at lunch time went to the supermarket and all I could find to eat was rice pudding or baked beans. I bought a tin of rice pudding and ate it cold from the tin, that's because I was hungry and fruit or a bag of salad just wasn't what I needed.
I agree too much free-from bread, free-from pasta, free from cake is not good for you but then neither is normal bread, normal pasta and normal cake. It's really up to the GP to say no to such large quantities as is described in the example. The good Doctor seems willing to let a 15 year old girl have as much as she asks for, then complains that all coeliacs are spongers and shouldn't be entitled to food perscriptions, as it is such a drain on the NHS. I'd just like to ask him to either stop giving so generously, or quit complaining.
I don't see what's so difficult about gluten-free food on the run. Billions of people around the world manage it.
If you want a sandwichey-thing, use wheat-free roti (chapatti/pitta, maize tortillas, pancakes etc.
You can make individual pies and pasties without gluten. It only takes a few minutes to make pastry, even taking into account time taken to mix different flours. I used to keep my own mix of flours for cooking.
It seems to me that the only people that can't manage a gluten free diet without special foods are those that have physical or mental reasons for being unable to cook, and for them, there is DLA to cover their food preparation costs.
I've just checked on mysupermarket, and a national supermarket chain that does home delivery sells gram flour and rice flour at approximately the same price as wheat flour.
As someone that has coelics and has to have a gluten free diet this view from a GP amazes me. I have paid my taxes and NI all my working life I have never taken benifits and only been in hospital once for a broken ankle, but your are saying I should not get help have products on pescription.
The recommended amount of items a month for someone of my age is 18 so surely you are going over this recommendation if you are allowing one of your paitents to have that many items every month?
I pay for mind through the yearly card as is my right. If the prices the companies charge is to high that is something for the NHS or NICE to look at and not something you should be having a go at people who have a life long condition that can make the person very ill and lead to alot of other conditions though out thier life.
I’m sure sticking to a CD diet is tricky at times, and entails a lot of hassle, but the old ‘I’ve paid me taxes’ line of argument really won’t wash.
There still have to be some limits to funding, the NHS can’t be expected to bear the brunt of limitless expenditure.
My two children both have Type I diabetes, but last time I looked we couldn’t get a prescription for sugar-free sweet, cakes and drinks.
its not limitless expenditure at all, as I said if his paitent is taking £500 a month worth of goods then that is above the NICE recommendations and something he as a Dr should be putting a stop to.
Rob has a very valid point here, my partners mum had alzheimers and could not get medication when it was in it's early stages as these drugs are are not recomended by NICE. It must be hard being a GP and having to tell a patient that they cannot have the best medication available for their illness. So even though I am a coeliac and a tax payer I would rather that Dr's could prescribe medications and chemists dispensed them rather than I can get bread, biscuits and pasta etc on the NHS.
Not all coeliacs can eat the prscription wheat starch based foods because there's traces of gluten in it.
And yeh it's a drag being a coeliac, but is food on script the real answer?
> Anyone diagnosed as having gluten sensitivity
I am no doctor but IIUC CD is an auto-immune disease and symptoms can vary from trivial to completely debilitating. Dismissing it as a "sensitivity" is completely misleading and unhelpful.
> is entitled to free prescriptions for the rest of their life for gluten free food.
Not free, as you later acknowledge without changing the original inaccurate post. It is available on prescription. Furthermore in my experience it is limited quantities of a limited range of staple items that are available. If that is not the case elsewhere therein lies a problem.
> Courtesy of the taxpayer.
Lovely cliché
> Most...Big Pharma and their clients dine out on this big time...
Which suggests someone should be banging heads together in NHS procurement, last time I checked CD sufferers don't hold those reins
> OK, I am not suggesting that patients with coeliac disease should not have some support from the NHS in case of genuine financial need
Gee thanks! Last time I checked NHS was theoretically free to all, not just those who couldn't afford a better alternative. if you want to debate the validity of that fine but it has nothing to do with CD
> - though frankly I can think of more deserving cases.
Another straw man, we can all think of more deserving cases for money than practically every condition, but it doesn't mean they are excluded from funding.
> But like all family doctors in the country I am both cynical and angry
That sounds about right in my experience ;)
> about repeat prescription demands like this:
Another straw man; of course those are inappropriate requests and you shouldn't sign them, but since 99.9% of CD sufferers are presumably not requesting or receiving anything vaguely like that it is irrelevant. Should all benefit be stoope because some people abuse it, should all doctors be put in Prison because one breaks the law? Facile.
> This is an abuse of the taxpayers. It is the sort of approach to healthcare that is bringing the NHS to its knees and preventing more resources going into, for example, drugs for the treatment of cancer. Have a Grissini.
Yes, that's right CD sufferers are stealing money from cancer drugs and we also eat babies. Yet another ridiculous bit of red-top "argument".
You claim you want a debate on this, if that is true how about you start by making some serious points and makign them to the people that are actually at fault in your proclaimed view, i.e. your lords and mastrers in NHS, NICE, Politics, instead of an ill-informed rant "ad hominem" at CD sufferers who don't have any control over it.
If NHS says CD sufferers get presciption food of course they will make (appropriate) use of it, just as you quite rightly work legally within the system to earn your corn.
If you think that is wrong change the NHS, don't hate the innocent sufferers.
Well, in theory you could get sugar-free drinks and cakes on prescription Rob, but you'd need to have a very friendly GP. There is a blacklist of things that aren't prescribable (which includes fairy liquid and a very strange selection of other stuff)and sugar-free drinks aren't on it.
I have seen bottles of scotch on prescriptions a few times when I was a trainee. I was the fool who had to go to Kwik-Save, buy the Scotch, staple the receipt to the prescription and send it off to the PPA. that was in 1993. We even had to put a label on it!
Yes, patients and pharmacists often come to sneaky deals- especially on things like food, hosiery, etc. It's still fraudulent and I wouldn't want to get struck off for giving people illicit mine pies. Especially ones better suited as door stops
MrHunnybun said...
Well, in theory you could get sugar-free drinks and cakes on prescription Rob, but you'd need to have a very friendly GP.
Not likely MrHunnybun, GPs won't even prescribe test strips to diabetics these days yet alone soft drinks. They somehow expect T1's to manage on 50 strips a month!!
Luke, presumably as CD is autoimmune and AI diseases often come in pairs,trios etc., it is likely that more people with CD will be ticking the diabetes/myxoedema free prescriptions box than would the general population.
There are two things in the original articla that are wrong; most coeliacs doen't get free prescriptions and nearly all of the GF stuff you can get on prescription is not worth eating.
I'm over sixty now, so I get free prescriptions, but all I get is Dr. Schar's pasta perhaps twice a year. All of the cakes and biscuits that I eat, I get in Waitrose or Sainsburys. I do not eat bread at all, unless I'm in a good restaurant and they serve it fresh.
I should also say that diagnosis of coeliac disease is very important. I was not diagnosed until I was 53 and at that age I was going downhill fast, with severe joint pains, gut problems, mild depression, gall stones, chronic dandruff, bad skin, to name but six. Now at 61, I feel better than I did at 50! The oddest improvement, is that now I can go out in the sun in a hot country and still feel well. Years ago, after an hour or so, I was exhausted and had gone a bright red.
I should also say that my wife of nearly forty years died last December and I don't think I could have coped without the coeliac diagnosis.
Remember too, that one-in-a-hundred of the UK population are coeliacs, most of whom are undiagnosed. How many arthritis drugs, anti-depressants and other drugs are given out, when coeliac disease is the real culprit.
The UK charity for coeliacs have an APG that lobbies parliament to let coeliacs get prescriptions for foods including sweet biscuits, yet this same charity will not lobby the food industry to keep more foods naturally gluten free, here lies the problem for coeliacs and NICE. I am a coeliac and I see the UK charity as on the side of the low gluten wheat industry. Now due to proper food labelling 'gluten free' wheat starch foods will say very low gluten on the packaging and I wonder how some UK coeliacs will cope with that stigma on their 'strict gluten free diet' so it's down to choices and they have made theirs and I have made mine, I would love to see a charity in the UK that actually supports coeliacs who can not eat any gluten...So well done Dr Crippen for questioning this issue.
I wonder what the historical reason is for how the prescription GF food came about? Presumably it would be v hard for govt to change the arrangement, now it is in place and v well established.
There are other anomalies regarding what meds give rise to free presecriptions - e.g. from Patient UK site:
**
Who can get a prescription exemption certificate?
People who have certain medical conditions
Although there are many conditions requiring regular medication, only the following qualify for an exemption certificate:
A permanent fistula requiring dressing.
Forms of hypoadrenalism such as Addison's Disease.
Diabetes insipidus and other forms of hypopituitarism.
Diabetes mellitus except where treatment is by diet alone.
Hypoparathyroidism.
Myasthenia gravis.
Myxoedema (underactive thyroid) or other conditions where supplemental thyroid hormone is necessary.
Epilepsy requiring regular anti-epilepsy medication.
If, because of a permanent disability, you cannot leave your home without help.
If you have one of these conditions, get form FP92A from your doctor's surgery and fill it in. This is sent to the Prescription Pricing Authority who will issue a Medical Exemption Certificate.
If you have a Medical Exemption Certificate or Maternity Exemption Certificate, all your prescriptions are free, whatever the medication is for.
**
So the multitude of other conditions for which the only management is the active use of a medication are not covered by this. Again, I presume there is a historical reason that may have made sense at the time.
At least with coeliac, it is possible to manage it by avoidance and substitution - there is no need for the active intake of a specific treatment, that is not otherwise available.
I agree with the suggestion about vouchers - as there is a significant increased cost of specifically made GF food. It seems very odd that, currently, such a large supply can be requested and granted.
Perhaps Dr C would question why there should even be vouchers??? I guess there is the question of means testing eligibility - if it was purely done on benefits that would be a cheap way to do the means test but would only be sensitive for the least well off. A more complex means testing system would be more expensive to manage.
The person who suggested that there would be no market for GF food on E-bay as people with CD would be getting the stuff on prescription - perhaps the market is the people who consider themselves to have "wheat intolerance". I have phrased that carefully - I do suspect that, in some cases, it is an artefact of dodgy areas of the alternative health industry and is more of a superstitious behaviour than a physical health need. (and it gives those of us with CD a bad name "grrrr")
Another reservation I have about many specifically made GF foods, particularly bread-type ones, are the huge list of ingredients with so many syllables in so many of the ingredients.
I know they need to find a substitute for the stretchy element of gluten protein but, where I can avoid it, I would prefer to avoid eating so many syllables!
On a different point, there is no market pressure to go for cheaper prescription items - if patients could be aware, in a non-pressurising way, to start with the cheaper options and move upwards until they find GF food that they find acceptable (or better than that, but it could be a long search!) then perhaps the GF food companies, for items that are on prescription, would compete on price - they have little need to at present, so far as I am aware.
‘Well, in theory you could get sugar-free drinks and cakes on prescription Rob, but you'd need to have a very friendly GP’
Ha, never even thought of that!
As it happens I do have a very friendly GP, but since I rely on him to prescribe in the region of 500 testing strips and three different types of insulin each month, I don’t think I’ll push my luck by asking for diet coke to be added to my script…
Rob Clark,
Didn't I read in another post that prescriptions only entitle patients to 50 testing strips, yet you get 500. In your own words "the NHS can’t be expected to bear the brunt of limitless expenditure".
And last time I checked diet coke was the same price as regular.
Hi anon,
It varies massively from PCT to PCT, you do hear some horror stories about people having trouble getting as many test strips as they want but my family are very lucky in that respect.
I should add that the figure I gave is for three members of the family, ie 5-6 tests a day (on average) each month x 3.
Although test strips are ridiculously expensive for PCTs, regular monitoring and taking the appropriate action is still a much cheaper option for the NHS than hospital treatment for Type I diabetics for DKA or diabetic complications.
You’re right about the coke, of course, so it was a bad example. Sorry. But ‘diabetic’ chocolate, sweets, biscuits etc are all more expensive than their non-diabetic equivalents.
HTH
Well, in theory you could get sugar-free drinks and cakes on prescription Rob, but you'd need to have a very friendly GP.
No - not anymore. There is an appendix to the BNF (our drug dictionary) which lists the ACBS (advisory committee on borderline substances) which details what can be prescribed for which conditions (you need to have diagnosis of CD for GF food). We are also very closely monitored by PCTs and if we prescribe outside this (like juice or scotch) the PCT could come to us and make us pay. Now if a GP wishes to buy scotch for a patient that is fine - but this will not be through tax payers money.
"Diabetic" chocolate, sweets and biscuits are not recommended for patients with diabetes any more.
‘No - not anymore.’
Damn, missed my window!
‘Diabetic chocolate, sweets and biscuits are not recommended for patients with diabetes any more’
Luke, I’m well aware of that, thanks, probably know more about it than most GPs (well, the treatment of it, not the pathology).
I’m merely using an example from my personal experience of a condition where particular food substances (sugar-free rather than ‘diabetic’) that would be beneficial to a patient are not available on prescription, and querying why CD gets special treatment in this respect.
Rob,
Surely you can see the difference between your list of chocolate, sweets and biscuits, and a list of bread, pasta and non wheat flour. If the biscuits weren't on the list would that help? They make rich tea look exciting, they're not exactly hob nobs and jammy dodgers.
I can have all of it on prescription but I choose not to because generally the stuff from the supermarket is much better. Don't believe the posts about cakes and mince pies, at least I never had them on my list. Even if I had I know they'd taste bloody awfull. This stuff doesn't need means testing, if you're prepared to eat it you must be deserving.
Hello anon, I'm a bit confused why you are so angry with Dr Crippin's remarks he is making a point, it is his point of view, we live in a democracy where we are able to, and if you are angry because he put a link to another board, then maybe he was aghast at the comments made against him ie if he looks like a quack and talks like a quack etc. His comments were a general comment and not against any single coeliac on or off any message board. It isnt his decisoin whether coeliacs get food on script or not it's his point of view, and we should respect that whether we agree or not. I would look at the message that message board is sending out with the fury at him with all these persoanl posts against him and his opinion.
Also you said:
This stuff doesn't need means testing, if you're prepared to eat it you must be deserving.
So what are you really saying here? that if coeliacs didnt get this food on script then they wouldnt bother? this comment could be interpretted that prescription food for coeliacs is in fact what Dr Crippins said in the first place, a waste of money.
Imagine what it must be like to be supersensitive to gluten so that you have to avoid some foods labelled suitable for a coeliac and 'gluten free' so of course I think its a waste of NHS money.
A Sillyak
Re GF biscuits
I was given some as a freebie - they tasted very much like chalky indigestion tablets and sawdust - why did these ever get out of the product development kitchen?? Why would anyone ever get them a second time?? Is there something other than market forces at work??
Sllyak - you prob know that the GF pasta is often not from wheat at all, e.g. it is often maize/rice - so no reason for it to have gluten other than as a contaminant. So some "GF" food, available on prescription, will be lower risk than others, to a hypersenstive coeliac.
Hello Rose, I appreciate what you are saying about naturally wheat free pasta's on prescription being guarenteed to be gluten free. I feel that there are so many wheatfree pasta's in the shops that I don't need to get these. And agreeing with a previous comment of yours about the additives in some 'gluten free' foods I buy an Italian organic pasta thats made with corn and rice flour and at £1.70 for 250g it's not going to break the bank.
On the same track, coeliacs can get tapioca starch on prescription and it costs the NHS over £2.00 for 500g and I buy 500g for around 80p as gari from an Asian shop or 70p as tapioca starch from a Chinese store. Neither store keeps wheat flour with the wheatfree ones so that's reassuring. And they are within walking distance from my house.
So thanks for the advice on pasta you are absolutely right. I just prefer to buy my food from food shops. A Sillyak
There are very clear guidelines on prescribing for coeliacs, taking into account age and other factors. Dr Crippen strikes me as one of these people that mouth off without really understanding the subject, and as a typically lazy GP who probably went into GP practise because it offered a good life for an idle loudmouth, or he would know this and apply those limits to his/ her patients - but this would take some effort, so lets just bitch about it instead!
From my point of view, my monthly prescription exemption charge is probably less than I would save if I could eat 'proper' food, and in no way compensates for not being able to eat a nice fresh baguette or drink beer EVER AGAIN! If you think I see GF staples on prescription as a perk you should prescribe yourself a visit to a shrink!
Oh, and while I'm at it I think most GP's are overpaid, underworked refugees from real medicine who use practise nurses to generate huge amounts of income and pay them peanuts, abdicate their responsibilities out of hours to agencies and use A$E as a safety blanket if faced with a medical decision!
Just to make you shake your head even more Dr C, I get free prescriptions thanks to a permanent ileostomy and I can have 6 pairs of knickers a year on prescription! Absolutly no medical need for that.
"So what are you really saying here? that if coeliacs didnt get this food on script then they wouldnt bother? this comment could be interpretted that prescription food for coeliacs is in fact what Dr Crippins said in the first place, a waste of money."
No A Sillyak I ment exactly what I said, if you are going to eat it you probably can't afford the better alternatives. I don't understand your "logic" at all!
BTW not every comment by anon is mine. But I can see why someone could be annoyed by a link to a coeliac self help forum.
I think its great that you live within walking distance of and Asian and Chinese store. I imagine that not many coeliacs do.
I'm sorry you're hyper sensitive. And even more sorry you begrudge other coeliacs that aren't.
Hello again anon, my logic is that it is time to move on and away from coeliacs getting food on script so that 'market forces' look after our special food needs and with the proliferation of wheatfree foods in the supermarkets, coeliacs getting very very expensive low gluten wheat starch products on script is an unnessary luxury, ie; a 500g loaf of wheat starch bread costs the NHS £5.00 per loaf whereas a 500g wheatfree Dietary Specials loaf is £1.99 and is suitable for ALL coeliacs. It is my belief that tinned bread was available just after WW2 because of rationing, and now this is not the case. So ' my logic' tells me that we as coeliac's in the UK could have more choices and we wouldnt have to adhere to the old codex recomendation, so we could have undetectable gluten as gluten free, rather than the 200ppm as present which's going down to 100ppm. And just because a coeliac isnt symptomatic does not mean that low gluten isnt affecting them in a subtle way. So I genuinely believe that getting food on script is old hat it's time has come and gone. Also if we didnt get food on script there would be opportunities for independent bakeries just for coeliacs rather than the prescription route and which would you prefer? and lastly I don't begrudge anything lifes to short, I just think that we need individuals to stand up for what they believe in without being ridiculed as a loud mouthed Dr. because someone feels threatened by what they say. So you are lowering yourself with these comments, in my opinion. Thanks for the reply, A Sillyak (A coeliac)
Ps, someone on the glutenfree message board put a web link to this blog so why shouldnt Dr Crippen do the same? surely unless its a private group you want as many visitors as possible. Also I looked at that message board and there's a poor person getting gluten symptoms affecting her DH and wants to know how many slices of codex wheat starch can be tolerated in one day, kinda speaks for itself don't you think? And I would have made a post saying 'err you re eating gluten' but don't wish to be ridiculed for speaking out, and this is a message board for coeliacs on a gluten free diet... A Sillyak
I wasn't ridiculing them for being a loud-mouthed Dr - to be honest I think it's a sad indictment of modern GP's (i.e. those under 55) that I think my description of GP's is only too apt! And I don't feel even remotely threatened by what they say - I've never felt threatened or been worried by bigots or bullies!
Hi John,
Thought you might like this:
http://tinyurl.com/5ae86g
The Science cartoons it came from is a rich seam!
Hi anon, thanks as I have been able to express my feelings on this issue.
I help people in prison and so so many people are in prison because of class a drugs and on a message board like yours (it had a green backround and it looked the same to me) a coeliac posted how unfair it was them having trouble with getting food on script because of their PCT and they were outraged that junkies are given methadone on script, do you know that the addicts who saw that, made similar comments about that as you have about Dr Crippin. It's a funny ole world we live in and no wonder we are always at war. Thanks again, A Sillyak
Dr Crippen sounds like some of the doctors I went to with an 18 month old baby who was literally starving before her coeliac disease was diagnosed. To answer some comments - firstly gluten free food is available in other European countries on prescription, some of the items prescribed are just not available commercially, and there are recommended limits from the Coeliac society for prescriptions that are entirely reasonable that control the cost - I would suggest that as a responsible GP you merely stick to those limits. This is a completely nonsense post.
Just for your ongoing learning about coeliac disease and prescribing guidance, this link maybe helpful to you. It is worth reading as it is based on objective considerations. Then you will be much better informed and treat coeliac patients appropriately. http://www.coeliac.org.uk/documents/gf_foods_a_prescribing_guide_full_1.pdf
A Sillyak wrote,
On the same track, coeliacs can get tapioca starch on prescription and it costs the NHS over £2.00 for 500g and I buy 500g for around 80p as gari from an Asian shop or 70p as tapioca starch from a Chinese store. Neither store keeps wheat flour with the wheatfree ones so that's reassuring. And they are within walking distance from my house.
I'm surprised you're OK with untested gluten free flours but are not OK with codex wheat. I've seen research that found contamination in supposedly gluten free flours to a level similar or higher than codex wheat. Maybe you've been lucky so far? At least the gluten free flour (including naturally gluten free flours) available on prescription will have been tested for gluten levels during production, which is more than can be said for the flour in your local Asian or Chinese store.
I tried the fresh gluten free bread (made with codex wheat) which is only available on prescription but it comes in batches of 8 loaves (presumably to make it cost effective if you pay for prescriptions?) and by the time I took the 4th or 5th loaf from the freezer they were inedible (because I don't eat it often and they had been there for months), so I gave up on that. I must admit that the idea of knowingly eating the small amounts of gluten in the fresh bread also put me off. I know that research has shown that most coeliacs are fine on the small amounts left in codex wheat and I had a clear biopsy after eating a diet that included some codex wheat, but still, it feels wrong. I don't like having to think about the amount of slices I've eaten each day to avoid being poisoned so I also avoid codex wheat now!
I don't bother with prescriptions because it's more expensive than buying similar products in the shops and I don't use enough of that type of product to make a pre-payment certificate worth getting. However, I don't begrudge others getting GF food on prescription. I have seen research that found that people are more likely to stick to the diet when they get food on prescription which may save money in the long run (reduced costs for complications like cancer and osteoporosis).
Anonymous at 11.43am wrote,
Just for your ongoing learning about coeliac disease and prescribing guidance, this link maybe helpful to you.
Nice try, but he had this document pointed out to him the last time this girl and her GF prescription came up. Either he doesn't want to reduce the cost of the GF prescriptions to the NHS, doesn't bother reading links that he has been told will 'allow' this, or is lying about the amount he allows her to have on prescription. I've no idea why he has such a problem with refusing this amount on prescription. I doubt our practice has read these guidelines but they have no trouble in limiting the type of products they allow on prescription for everyone (no pizza bases, biscuits, cake mixes, just flour mixes, bread and pasta are allowed), and I'm certain they would never allow these quantities! The few times I have had things on prescription I've felt like a beggar taking a handout (the practice has it's own pharmacy).
Hello Jane, you said : 'I'm surprised you're OK with untested gluten free flours but are not OK with codex wheat. I've seen research that found contamination in supposedly gluten free flours to a level similar or higher than codex wheat. Maybe you've been lucky so far? At least the gluten free flour (including naturally gluten free flours) available on prescription will have been tested for gluten levels during production, which is more than can be said for the flour in your local Asian or Chinese store.'
I have seen this research and as I have been eating these naturally gluten free flours for over 10 years the proof of the pudding etc. I wondered where this research came from because in the 70's and 80's the majority of shops selling natural gf flours were the wholefood scoop type shops where you could use the same scoop for lentils and barley and evrything else. Doves Farm make a range of flours and their mills are not seperate and they had trouble with contaminated Buckwheat flour, so theirs obviously needs testing. I also noticed that rice flour by companies like Whitworths was classed as gluten free and obviously untested. This doesnt seem to be a major issue in countries where they don't get codex wheat starch, and have to rely on natural wheatfree flours
Is rice and tapioca grown, milled and packaged in the same area's as wheat? So I think this is partly a myth to reinforce the importance of codex products as I see to many unanswered questions here.
I see supermarket conveyor belts as a much greater risk of cross contamination.
So you have a very valid point but there are to many buts in my opinion, Thanks, A Sillyak
Is rice and tapioca grown, milled and packaged in the same area's as wheat? So I think this is partly a myth to reinforce the importance of codex products as I see to many unanswered questions here.
I think the problem is a lack of interest. They know that only a small number of people with CD are affected by the small amounts of gluten found in codex wheat and from contamination. The majority of people who stick to the recommended diet recover. Who is going to spend money on research for the small group who doesn't? I'm surprised that 'they' stress the problem with contamination in oats when at least one study found similar levels of contamination in other grains.
This 2003 study found that 13% of the oat products tested contained gluten over 200mg/kg compared to 14% in the naturally gluten free products based on maize, rice, millet or buckwheat. http://cat.inist.fr/?aModele=afficheN&cpsidt=15323459 The problem with this study is that only 22 naturally GF products were tested.
This Finnish study in 2004 found levels of gluten of between 20 and 200ppm in 13 out of 59 naturally gluten-free products and 11 out of 24 codex wheat products. http://www.ncbi.nlm.nih.gov/pubmed/15191509?dopt=AbstractPlus
Hi I agree that it's a lack of interest and understanding. I read that small amounts of gluten only affected a small ammount of the upper gut tract and that this was not important to assymptomatic coelics. I also think that codex is to help people who might not be able to stay compliant with a really strict gluten free diet, and maybe the taste of wheat is important to them.
Speaking from my own personal experience, I became anaemic when I introduced wheat starch into my diet. If I eat marmite I get mouth ulcers and no other ill effects, so that to me is a warning of low gluten. (Marmite is or was classed as gf)
The other big problem that ceoliacs face is that the ELISA gluten test is designed to detect gluten in wheat and not the other gluten like toxic prolamins in barley, oats and rye.
All I can say is that everyone noticed how much better I was after I stopped eating wheat starch and I felt better than I had for ages, I also stopped getting immodium on script.
So this is the best that I can answer your question, A Sillyak
Maybe it's simply a case of cumulative levels? It's accepted that it's impossible to have a completely GF diet - contamination will be an issue for everyone unless they just eat fruit, vegetables, rice and meat cooked from scratch. Maybe it's the combination of contamination gluten codex gluten that tips some people over the edge. One study found that the level necessary to cause relapse varies from person to person. You may be interested in reading it if you haven't already seen it, http://www.ajcn.org/cgi/content/full/85/1/160. The subjects in the placebo group actually improved whilst on the controlled diet during the study which suggests that a 'normal' gluten free diet isn't restrictive enough for them.
Hi Jane,thanks for posting this it is most interesting, and you said: 'Maybe it's simply a case of cumulative levels?' I think that you are spot on here.
Ironically I stopped eating wheat starch because I had a row with my chemist as they got a load of things I did not want and refused to change them, and I refused to accept them.
I was being tested for ongoing anaemia at the time and after 2 months of no wheatstarch my anaemia had gone. This was not a placebo effect.
My conclusion was that compared to eating a full on wheat based glutenous diet the low gluten wheat starch made me feel a lot better. I had also had a 2nd biopsy and my gut was normal, I was just always anaemic.
I think that before coeliacs say wheat starch doesnt affect them they should eliminate it for 3 months and then see if they can still tolerate it.
I make all my meals from scratch using fresh meat and vegetables etc. If I don't have any home made bread I will make pancakes with rice flour and that makes a great breakfast/lunch, and pancakes are so quick easy to make. We used to pass on cooking skills from generation to generation and thats to the detriment of coeliacs I think. Thanks, A Sillyak
I'm still having problems with iron levels (ferritin levels drop if I stop taking iron tablets) and low energy. I hoped that dropping codex wheat would help but sadly not, glad it worked for you though. CUK are currently funding research into why even coeliacs following the diet can still have problems with iron levels.
I agree with you....it's bonkers...but I'm not surprised.
She should only get help with ‘EXTRA’ expenses’ of buying gluten free food i.e. Tesco burgers £2 for, gluten burgers £3.60 she should get £1.60. At my surgery when children need special powdered milk i.e. gluten free and the milk can be bought over the counter as well as prescribed the doctor will prescribe half of the amount needed each month to help with the parents extra expenses but why should the parents pay nothing for their milk when other parents have to pay.
Maybe if the items she needs can bought over the counter you could prescribe half the amount?
Hi Jane, I don't get on with some medications in that with regular usage I often get anaemic. I avoid ALL astringents aspirin and alcohol especially because these make evryones colon bleed slightly, we get rid of old used blood from the cells in our colons and most people don't notice it, and I think that some coeliacs are more sensitive to astringents than is the norm. Ie some coeliacs get microscopic colitis because the gluten has made their immune system attack their colon.
Twice since diagnosis I have gone very very anaemic and the hospital wanted to admit me as an emergency, I stopped taking co-dydramol, and within a few months my blood count was up there with meat eating body builders at the mid 300's from being deplete in my bone marrow. I spotted it because my blood count was good then I had an operation and they kept me on a low dose of co-dydramol, and my blood count plumetted, the hospital specialist said it should not cause this, but for me the proof of the pudding etc.
So I would look at everything that you ingest and try to eliminate or change one thing at a time. A Sillyak.
Thanks for that Sillyak, I'll look into the idea.
A few thoughts:
I object to your ill-informed and innacurate comments.
1. Coeliac prescriptions are not free
2. stand up and say NO. stick to the guidlines
3. get some training man - you should be aware of the long term effects of Coeliac disease and why prevention is saving the NHS £Millions in the long run.
I have Coeliac disease -
I get VERY VERY ill when I eat any Gluten
I can cook - and do good GF food in the house, but dining out or 'eating on the go' can be a real issue. I cannot eat too much fruit etc due to having Ulcerative Colitus. I'm often Anemic and very Ill - I need Pentasa & Iron & Calcium tablets. I'm also on Warfarin (which keeps me alive)for life. Do you object to this as well?
I work for a major food producer - and have a direct line to the MD - while the company is sympathetic to Coeliac disease sufferers the truth is that in a competitive world and with shareholders to satisfy it could not go GF (this would involve factory complexity and substantial costs running into 10's of £millions). In truth the market for GF food is limited so will always be more expensive (unless its naturally GF already).
So market forces will not come in to play.
Having said that the mnore the NHS prescribe that more they need to negotiate the costs down! With more players in the marketplace this shpuld be possible.
So Dr:It sounds to me like you need to look a bit closer to home! is your gripe with me as a Coeliac or with the NHS?
Let me also finish by saying that if you exibited you'r ill-informed and mis-guided opinions to me in your surgery I would put in an official complaint - Ignorance is not an excuse!
I cannot belive what I have been reading.............I would just like to start with the facts here, I have a daughter aged 7 who has been diagnosed with coeliac disease since she was 4 (which was a battle with my G.P to gain the diagnosis I might add) COELIAC DISEASE IS NOT A FOOD ALLERGY IT IS AN AUTO-IMMUNE DISEASE! My husband and I don't have a huge income and I do not abuse the prescription service offered, i.e the fact that fresh bread is only available on prescription speaks for itself, i spend an absoloute fortune on gluten free products in the supermarkets. Just as an insight into life with coeliac disease, would you consider when you are at a reataurant at every occasion having to make special arrangements with the chef, speaking to the restaurant in advance, now I ask you to think about doing this in spanish/french/greek/turkish??? and then worry about if and when your child will be ill.It happens in this country, after all when was the last time if ever you have seen a menu choice stating 'gluten free'when you are on holiday........... I do not claim any benefits and know nothing about affore mentioned comments relating to G.P's and prescriptions, I'm just gratful I can get my daughter fresh bread and not some of the horrible stuff in supermarkets. I totally agree abuse of any prescription is a disgrase but people living with this disease should not all be tarred with the same brush, surley anybody abusing the system should be tackled, I'm sure that this would be more than likley drug related, does the same G.P consider if any other prescriptions are being abused?????????? and if they had any intergrity thay should act accordingly and not just single out gluten free foods prescribed on prescription. In answer to your question.....why should people with coeliac disease recieve prescriptions try living as a coeliac for a week and you'l sharp find out
sent from: fav.or.it
I can't believe what I am reading. So you are saying that diabetics should pay for their own insulin, cancer patients should pay for live extending drugs, people with alcohol problems shouldn't get counselling, drug addicts shouldn't get methodone, people struggling with death of a close one shouldn't get bereavement counselling because all these things and many more are at the cost to the tax payer. Yes the food is expensive but hopefully in time the cost will some down but I'm guessing there are stricter guidelines when producing these products.
Unbelievable how some people think. You basically don't want anyone with any condition or problem to get help so what's the point of the NHS. So people over a certain salary should go private then!!??
sent from: fav.or.it
As a coeliac, I really appreciate that a limited amount of substitute food is available on prescription. The GF food in the supermarket is so much more expensive than the normal versions that following a normal diet would be either expensive or difficult. Also, the prescription bread is much more palatable. However, I was shocked that the pharmacist seems to have to pay more for identical items. For example, I have a few biscuits every month and ate them all, so (not being one to take the mickey) I bought a fresh packet of Trufree digestives in the supermarket for £1.49. These are made in the same factory as the Glutafin ones, have identical ingredients and nutritional information - and once inside the packet, they even look and taste the same. I enquired at the pharmacy about buying the occasional packet from her as an extra - and they are billed £2.49 - a whole £1 more. No wonder some PCT's are refusing to prescribe anything other than bread and flour! This is a complete rip off for the NHS (and me as a taxpayer). The only differences I can tell between Trufree biscuits and Glutafin ones are the packaging and the price. I wonder how many other products are sold to the NHS at a higher price than to retail customers? I don't believe many coeliacs are "scamming" the NHS for free or cheap food, but someone somewhere is making money out of this.
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