Dr's told to stop prescribing gluten ... - Gluten Free Guerr...

Gluten Free Guerrillas

10,828 members4,412 posts

Dr's told to stop prescribing gluten free food,

14 Replies

Hi folks I heard this on the news this morning and I think that we all knew that it was coming.

In February I asked for a repeat prescription at my Dr's even though I should have 'reviewed' it in Sept 2016 I was told that I could review it by phone and my Dr would ring me after surgery, which they did and they invited me into the surgery for a blood test the following morning and then to make an appt with my Dr who is one of the senior Dr's in my practice.

When I saw the Dr she told me that she wanted to talk to me about my diet as I did not get food on prescription and there were claims that coeliac who did not get food on prescription were non compliant with their diet. And asked how I saw my diet, I replied that I tried to eat a whole food gluten free diet and I felt slightly indignant about being thought of as non compliant so I replied that I did not eat many foods classed as gf because they actually contained low levels of gluten. So she said then you ought to get food on prescription. I told her that a lot of it was highly processed wheat and it made me slightly anaemic and lowered my micro nutrient levels.

She then told me that lots of coeliac were low in iron and vitamin D and that my levels were not only normal but high so I smiled sweetly, I was weighed and her comment was that I ought to put on some weight, I replied that I cycled a lot and liked being active and that my BMI is around 20.

When I was leaving her consulting room she asked are you sure you don't want any flour on prescription and I said no thanks she then told me that she thought that the cost to the NHS was criminal and said maybe she should tell her coeliac patients to eat real food? And thanked me for seeing her. I just smiled at her and thanked her for seeing me and giving me a thorough examination. But on reflection the interview was loaded as in the past I have had repeat prescriptions without seeing anyone for longer than this.

Here's a link to a couple of articles in todays papers including the Mail as the interview was with them:

theguardian.com/society/201...

dailymail.co.uk/health/arti...

If I'm honest I think that over the counter painkillers like paracetamol which cost pennies should not be on prescription as the chemist gets a £1.00 handling fee for all prescriptions but I feel for coeliac who feel dependent on prescription foods and feel that those of us who don't should share how we deal with our diets and I'm sorry of this is a bit long winded.

Read more about...
14 Replies
RodeoJoe profile image
RodeoJoe

Not surprised, and I think it was the right call. I've never had GF prescriptions because I don't eat much specifically GF food, and on the occasion I do I buy it from any supermarket. Also I've always been aware of the huge costs to the NHS, they pay way more than you can buy these foods from supermarkets.

If my Dr suggested that I needed GF food to maintain a healthy diet, I'd suggest they read the ingredients in a loaf of GF bread.

philaustin profile image
philaustin

Had our GF food on prescription cut in Bedfordshire this month Jerry. If the're making cuts, why stop at paracetamol? Why not cut 'the pill' on prescription too. We used to have to buy our own condoms from the Barber's shop.

RodeoJoe profile image
RodeoJoe in reply to philaustin

Simple answer is that not prescribing the pill would ultimately lead to more abortions.

Henbur profile image
Henbur in reply to philaustin

Unwanted pregnancies have a much higher human cost. Personally I'm ok with the decision even though myself and my 2 children are coeliac we've never claimed. Although we don't have a processed diet and we are not low income household so I can understand it is bit easier for us than some.

Hi Jerry, well you summed it up pretty well, nobody NEEDS bread, pasta, flour, cereal and many coeliacs (and others) eat a very healthy naturally GF diet without it.

Not only is the cost to the NHS disgusting, the prescription service kept some really substandard products going and distorted the market for far too long by inhibiting competition and discouraging innovation.

Thank goodness for the GF "fad" and that it gained all that momentum - just look at what has happened with the availability of GF foods in supermarkets.

Hopefully the retail prices will come down a little further now. And pharmacists will be delighted that they don't have their cupboard space taken over by multipacks of loaves.

I'd like to be fly on the mast of the Juvela/Glutenfin swish yachts in the south of France this morning. Make the most of the bubbles folks, the party's about to come to a justifiable end.

Let's hope it's the tip of an iceberg and many other NHS rip off merchants get their comeuppance!

glutenfreemumuk profile image
glutenfreemumuk

Hi

I have very mixed feelings about this change, and am need ing some encouragement.

Firstly the cost of gf foods to the NHS is dreadful, but it doesn't need to be. The level of profit/exploitation in the pharmaceutical industry should be looked at and challenged.

By removing the prescription route of obtaining gf bread andflour, the only option is to go without when supermarkets are out of stock. Some people seem to be happy with that, but I like to have some bread, it gives a bit of normality to me. I think I've mentioned before that I typically travel to 3 or 4 different towns to buy gf bread and flour as stocks are so unreliable (I need a lower ppm than many people). It makes it even harder. There is also the public hostility against coeliacs 'taking NHS money when it could be used to cure cancer' mentality which rears its head from time to time amongst colleagues, friends, family etc.

But most of all what upsets me is this reduces the medical support for a tricky condition even further. It seems many doctors think coeliac and gluten sensitivity can be sorted by bread substitution and that it is purely a digestive condition and that is all it requires. There seems to be so little understanding of the complexity of the condition and the 'you must be imagining it' attitude of some the medical profession, when in fact they are so removed from the current research and scathing of patients who are not 'better' or needing advice. Whilst in some ways I won't now be going near GP as I don't need to collect precriptions so that makes life more 'normal', in another way i feel even less supported. The psychological impacts of the unsociableness of 'the diet feel even tougher when the medical support (ie a prescription) goes as well.

For me the psychological anti social needing to talk about tricky food and regularly getting ill if I eat out or at someone elses, turning down meal invitations if they are too complicated or expensive to justify eating lettuce as it is the only thing on the menu without gluten is one of the hardest parts. Now i can't rely on getting bread to make a sandwich to take with me instead.

Oh well, I'll stop complaining now. I'm grateful to be well, enjoy my food and life is pretty good. However I thought you all might understand where I'm coming from. Thank you all of you for fantastic support.

😀

RodeoJoe profile image
RodeoJoe in reply to glutenfreemumuk

I don't really find it a tricky condition just a minor inconvenience. I got diagnosed about 10 years ago with an endoscopy, spoke to a dietitian and haven't needed medical advice about the condition since that day. I don't find it complicated, and I don't feel I need any kind of annual checkups. Sometimes I can't have what everybody else is eating and my abstinence is for health reasons. At worst annoying!

As you say there is a hostility toward coeliacs because of the prescriptions but of course that should no longer be an issue.

Penel profile image
Penel in reply to glutenfreemumuk

Totally agree with you Glutenfreemum. You're very lucky if you have access to a doctor who understands the possible complications surrounding Coeliac disease or any other food related problems. Thank goodness for this site.

Even 10+ years into eating gluten free, the social isolation of not eating 'normal' food can still be upsetting if I have not prepared myself for it. I ensure that I always have supplies of what I need by buying on line, and cooking my own bread-like products.

RodeoJoe profile image
RodeoJoe in reply to Penel

Prescriptions aren't really intended to stop people getting upset.

The reason for this whole prescription change is that GF foods, paracetamol and cough mixtures are available at any big supermarket, where as once they weren't, these prescriptions are costing the NHS millions every year.

The population is getting older and more lives are being improved and saved with new treatments like transplants and cancer therapies that weren't available in the past. The NHS budget needs to cover the increased older population and these very expensive therapies.

Penel profile image
Penel

The cost of gf food to the NHS is disgraceful and has needed addressing for a long time, but the comments from the NHS spokesman show a real lack of understanding about the seriousness of Coeliac disease or the potential problems for low income people.

in reply to Penel

You're bang on here Penel, but what we have to take into account is how medicines have to be stored and distributed compared to the big supermarkets. Included in this is the chemists dispensing fee which 10 years ago was £1.00 per prescription.

My son had a summer job delivering meds to Boots chemists from their warehouse and he drove a small van where the load area had to be kept at a constant temperature so had seperate air conditioning for the load. So compare this to a juggernaut delivering to Tesco's from their warehouse with own brand gf bread rolls and paracetamols included on board. And then we buy them and can use self service tills. And I remember him telling me how he just had to deliver methadone and a box of Juvela bread to one branch in a fully air-conditioned van.

So where this lets everyone down in my opinion is the fact that 500g of Juvela now costs the NHS over £8.00 whereas in the Eu including S. Ireland it is available under the Semper brand also owned by the Hero food group for 2.5 Euro's

gluten-free.semper.com/prod...

So it isn't just a case of no competition or profiteering it is the most expensive means of distributing food.

As for not understanding coeliac and the isolation that is something that only 'we' understand and knowing others feel the same helps. And it is this psychological aspect that others totally lack understanding of or empathy with as they just don't get it. And I was diagnosed when dinosaurs roamed the earth...well Jurassic park was out, in late 1993. And I still have negative emotions about being a coeliac sometimes.

Penel profile image
Penel

There is now an Early Day Motion to be put before the House of Commons requesting a rethink on prescriptions for coeliacs. You can contact your MP if you want them to support it.

coeliac.org.uk/about-us/new...

in reply to Penel

I'm not surprised as they are the real losers as they will lose massive funding from the codex wheat starch industry. The NHS will be the winners and the poor old coeliac is the fall guy.

I was horrified to see that they are now saying that malt vinegar is safe for coeliac.

I wish they had a zero tolerance to gluten like my body but I'm just a coeliac and they're the self anointed experts. If they supported me and my dietary needs then I'd support them. And I haven't been a member for around 15 years. So as for me emailing my MP wanting the NHS to pay 4x the going rate...in their dreams...

You may also like...

Gluten free food labelling UK

newer food labelling here in the UK lets them down? I notice that it now rarely mentions gluten...

How gluten free should gluten free be?

measure zero gluten we can not guarantee that food is totally gf. In my opinion gluten free...

Gluten free Pork pies in Bristol at the food festival the Paintworks Brislington.

met Malago (Maggie) who owns and runs the 'Store cupboard' and I told her that her secret was not...

At Last, Gluten Free Food Directly from the Pharmacy?

\\"You can't just go and get gluten free food without a prescription\\". \\"Who is going to pay for...

NHS help for gluten free foods

with IBS symptoms, I have gone gluten free but am finding that the foods are more expensive and...