funding for gluten free prescriptions

[auntevil]

I read this article last night about Oxfordshire PCT consulting on withdrawing funding for gluten free prescriptions. Just wondered if anyone else's PCT are doing the same, and is this the slippery slope for all coeliacs to receive no support?
www.foodsmatter.com/blog/should-gluten-free-food-be-available-on-prescription/

TBH I agree with what the PCT say.

I cook all my own gluten free food. I occasionally buy gluten free stuff from supermarkets as a convenience item when I am travelling but not as nice as what I can cook myself. Simple fact is, you don't have to eat wheat and GF food is not a medicine.

Sadly, I do think that this is the way it will probably go eventually. I received a letter this week from our PCT stating that the guidelines for prescribing GF foods for coeliacs had changed and DD1's prescription might be affected. It basically said that no 'luxury' items would be prescribed. I don't believe that anything she's prescribed could be described as 'luxury' and I disagree with MoreBeta as I believe that no only should coeliacs have certain foods on prescription but also those with life threatening allergies like my DS2. I don't have time to cook all my own food (I barely have time to cook at all) and with one child who can't have gluten and the other who can't have wheat, milk, eggs or nuts, food is a major issue in our house. The article suggests that GF food isn't much more expensive than normal food and I would love to know where they get that idea from! I pay over £2 for 4 little wheat & gluten free bread rolls for my DC whereas I could buy 4 normal bread rolls for about 50p! We are very lucky that, thanks to a brilliant dietician, we do get a few basics on prescription for DS2 such as pasta and a loaf of bread even though we're not necessarily entitled to it (because he's not coeliac). Without it however I'm not sure how we'd manage as we can barely pay the mortgage as it is and our food bills are already astronomical. GF food may not be a medicine but there are plenty of things prescribed by the NHS which are not technically medicines but are prescribed in order to improve people's health and well being (eg orthopaedic insoles etc). There is a lot of inequality within the NHS such as diabetics getting everything free while asthmatics get nothing, not even the inhalers they need to keep them alive. I think the whole prescription system needs revising rather than just cutting out whole groups of patients on a money-saving whim.

Yes I agree that supermarket bought GF is very expensive but get a bag of Doves Farm flour, some yeast, sugar and salt then you can knock out your own rolls and freeze them in batches. Get a breadmaker and making GF bread loaves is an automated job that is done for you in the evening while you MN.

I have two children with coeliacs - I do think that GF prescriptions should be reserved for those who actually have coeliacs rather than those who are gluten intolernt. My old dd also has diabetes so if we have an accidental challenge then it has major consequences for her blood sugars too. When bread is £3 a loaf (and our school are making a major fuss about doing school dinners for a child with coeliacs and diabetes - don't get me started) I think it is fair enough for us to get it on prescription. It would however make more sense to issue vouchers for exchange at stores because the genius bread given out on prescription is hugely more expensive compared to just buying it. However, when my children have to have such a restricted diet having access to nice bread that is affordable (and honestly I reckon probably under a third comes via prescription) makes things a lot better for all of us.

From what I have heard, the NHS pays the companies that supply GF on prescription huge amounts more than you would buy in a shop.
I'm in the 'cook some, buy some' group. I do big bakes at the weekend, freeze some, but usually struggle by the end of the week with 3 growing lads to GF feed! I wondered what tax relief there could be to products that are GF and CF free. With all this talk of a tax on foods that are 'bad' for you, could they not reduce any tariff on foods that have a medicinal benefit? Bringing down the cost of these foods even a little would combat some of the concerns, that if the prescriptions were stopped, people might have. This could apply to the flours and 'raw' products as well as the basic manufactured products.
The dietician (NHS) advised me that part of the reason that the NHS provides a prescription - in particular for children, is that they require quite a high level of carbohydrates. Parents often cut out bread, pasta etc and use foods such as rice and potatoes. Which, although good, usually leads to the overall reduction in the level of carbohydrates available to consume. If you add this to the fact that many needing the prescription are failing to thrive, that was one of the reasons that it was provided.
Brandysoakedbitch - our school dinner service have refused to do meals for my DS as they consider it too difficult to keep within the healthy schools menu! - Don't get me started either!!

We would find it horrifically expensive if dh's prescription was withdrawn. He has coeliac.

Brandy - find us parents of kids with diabetes on the uk mailing list for children with diabetes, open a new gmail account to cope with the mail! People there have been through all sorts and offer a listening ear (& a laugh). Lots of parents of children with both conditions on there too x

www.childrenwithdiabetes.com/uk/

Hello MoreBeta

My DD has a wheat allergy and I was wondering if you would be happy to let me know where you got the recipe for the GF bread / bread rolls that you bake. I have tried to make my own but it's always turned out a bit erm rubbish to say the least.

My DD has a wheat allergy that is anaphylactic. She also has many many other allergies to many many everyday foods is a big issue for us too. I have heard of some wheat allergic kids being prescribed GF bread and pasta and other like my DD have not. I don't begrudge the NHS prescribing anyone GF foods, but it's a shame that the rules are more flexible for some that others.

We buy mostly ingedients and cook most things from scratch. I've never mastered the bread thing though, so if you would be happy to share your recipe, that would be brilliant.

Many Thanks

I was going to ask the same question. Have you ever tried home made GF bread? It's shite. Genius is the only remotely edible loaf available. Dd will eat genius occasionally, or supermarket gf Pittas. Neither are cheap, or easily replicated at home.

I have to say the Warburtons GF loaf and rolls are much loved by my dds too but the genius seeded rolls and loaf win every time. Agreed home made sucks - that's why it took the Genius Lady all those years of dedication to make something she could actually sell.

Thanks Brambles, nice to know we are not alone. we have just had a challenge from an unknown source in the last few days and dd was sent home from school today as could not stop the hypos

The only bread we have found that is ok for DD is Ener-g Gluten Free Loaf. Not readily available in supermarkets. Most that the ones they sell have either egg or soya that we have to avoid.

mummat39 - I just use the recipe that came with my breadmaker and make it in the breadmaker. I would recommend getting a breadmaker as it takes to the laborious slog out of bread making if you are busy. I just put it on when the DSs come home about 6 pm and and its finished well before I go to bed and we have a fresh GF loaf for breakfast. It tends to go quite dry after a day or so and I tend to freeze what is left and use for making GF croutons, breadcrumbs, etc

Here is the recipe for 750g loaf.

410ml of warm water
500g Doves Farm GF flour
2 large eggs
3 tbsp (45 ml) of olive oil (any good veg oil will do)
2 tsp of Xanthan Gum
1 tsp salt
1.5 tsp of yeast (buy the sort that comes in a satchet specially for breadmakers)
4 tsp (25g) of sugar
1 tsp (5ml) of white wine vinegar (cider vinegar works too)

GF bread dough is a slurry and the rising and proving is tricky. Takes about 3 hours to mix, rise and cook. The actual cooking time is 95 mins. I dont like using Xanthan Gum as it has a slight bitter taste and is not really good for you healthwise. Am experimenting with liquid and dried egg white as a replacement.

thanks for that morebeta.

brandy, what a royal pain, hope that recovery is swift. Gotta love those rollercoasters .... (we're now using continuous glucose montoring, which is a real eye opener)