Coeliac prescriptions

[Schroedingerscatagain]

I have just been informed by my pharmacist that at the end of January all coeliac prescriptions will be being withdrawn, adult and child

As a family we have three, two teens and myself affected so our food bill will be rising somewhat

I know this has been on the cards for a while but apparently pharmacies have known since early December and were advised to keep quiet and not tell those affected

Apparently other prescriptions items like pain killers are also set to be ended

My Dd is coeliac and I put in a request for a repeat prescription for some bread and pasta at the doctors on Friday so will check on Monday if the prescription is ready to collect or if they say that they are no longer doing prescriptions for gluten free food.

I know it does depend what each county’s policy is, as some county’s have discontinued it, I’m in Norfolk and they have stop prescribing for adults but have continued for children so far.

I would actually check with your doctors surgery as by my own experience our pharmacy does get things wrong sometimes, and I’ve lost count of how many staff at our doctors surgery have told me its no longer available and I’ve had to tell them that it’s still available to children but not adults so please check, for them to come back and say sorry your right.

I’ve also looked on the coeliac uk website and it doesn’t say that it’s been stopped.

It costs the NHS a freakin' fortune.

I think it's because the cost of gluten-free goods have come down a lot now that they are more widely available - and pain killers are cheaper otc.

I’ve been expecting it for some time, it’s that they have actually instructed pharmacies to not tell customers that irritates me

I know some prices have come down but decent bread is about £3 a loaf and with two teens it doesn’t last long

Coeliac disease put me in a wheelchair due to misdiagnosis so I don’t have the luxury of an income, my dh is the only wage earner and losing 3 prescriptions will impact our income as they are removing adult and child prescriptions

Well an update for you Schroedingerscatagain I’ve picked up my Dd’s Prescription and taken it to the pharmacy so it’s still available for children where I’m from.

Our prescriptions were stopped two years ago (for my three coeliac DDs - all under the age of 16). It's the decision of your individual CCG. Apparently it saves the NHS £100,000 in our borough.

I wouldn't mind if I thought the NHS had investigated other options. It makes me furious that a box of 8 tiny Juvela loaves costs the NHS £35 , yet a decent sized loaf of supermarket own brand gf bread is about £2 - less than half the price. The manufacturers who were supplying the pharmacies really had them over a barrel and were totally taking the NHS for a ride.

Our CCG did a consultation and I asked to be called, but wasn't. I wanted to ask if they had considered options such as those used in other countries, whereby vouchers are issued to each person with coeliac disease for them to use in their own supermarket. This would cost the NHS much less as the supermarket gf food, whilst still much more expensive than normal food, is far cheaper than that supplied to pharmacies.

We're lucky that, at the moment we can afford it, although when DH was made redundant last year we had a scary few months. But the health implications for those that can't and who may be forced into abandoning their gf diet will cost far more than the money saved by stopping the prescriptions in the long term. There's no way my DDs could eat gluten on a regular basis - the smallest mouthful eaten by mistake makes them vomit continuously and violently for 3-4 hours - but there are others who don't react quite so strongly and would therefore not appreciate the damage they are inflicting on themselves.

Sorry Schrodingerscat for ranting on your thread. No advice I'm afraid - just sympathy.

I'm coeliac too and haven't had prescriptions for years and years (after boots cancelled them and I thought I'm in the fortunate position to be able to pay for gf food, plus I saw something re: how expensive it is for the nhs, so I didn't bother to chase them up). I know that this makes me one of the lucky ones, and I am so sorry to hear that a misdiagnosis has led you to be wheelchair bound, op; do you mind if I ask what happened?

You make some excellent suggestions, tk.

I'm so sorry that this chronic health condition is causing people financial hardship though; we didn't choose it so it does stand to reason that children at least, ought to get prescriptions.

Mind you, I do have to say that a coeliac can get by reasonably easily without any gluten free substitutes- potatoes, rice, etc etc. I know it's hard for food "on the go" if you haven't got bread or pasta for a salad, but surely people won't starve or harm themselves if they literally can't afford the food?

My reactions are quite extreme therefore I would never, EVER willingly eat gluten!

I am Coeliac too and received a letter from the GP practice to say prescriptions for gluten free foods was jstopping for those not entitled to free prescriptions ie pensioners or those on income support. It seems it may vary from area to area,so maybe worth checking with your GP practice, fingers crossed you won't be affected by the changes.

Coeliac uk might have some info about this. I know on their facebook page they put links up to the areas who were doing consultations about stopping prescriptions and notifying when different areas had changed their prescription allowances / got rid of them.

Sadly the county in question have indicated they will go against the government advice, funnily enough they made their decision public 2 days before the national announcement