Can someone help with my understanding and ordering prescription foods please?

I am going to order some gluten free food on prescription, and I have a feeling that the easier I make it on the GP, the easier the whole process will be on me.

What little I know so far is that there are PIP codes for each individual item, and that quoting those codes when ordering foods helps move things along?

Can someone point me in the right direction, perhaps a bit of reading material, so I can understand what foods are available, what I might be better off avoiding, how to identify a specific products PIP code, and any other info for this process that I am unaware of but that would be useful to me.

Much appreciated!

16 Replies

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  • Hi Rob

    You're right that PIP codes move things along quicker, however I still seem to order things with PIPs that never make it to the chemist!

    If you know the food you want then you can get the PIP codes on the companies websites; Glutafin, Juvela, Livewell, Genius, Schaar and BiAlimenta are all companies that produce DS foods. Coeliac UK also have the PIP codes for prescribables in their annual coeliac guide.

    You can also contact the companies above who will normally send you free samples for the products you can order - that is worth doing to get a feel of the products you might like.

    When you've got your list sorted it's best to take it to the surgery as a table, stating Company, product, PIP code and quantity.

    Generally men can order 18 'units' a month and women 15, you might get more if you have a highly active job or lifestyle. What makes up a unit is variable, though again, most companies now list this on the websites. Be aware that things sometimes come in large quantities or packs - I was ordered 3 packets of biscuits but got 3 boxes, each with 6 packets! The fresh breads and rolls usually come in large quantities - I know the Juvela minimum order is 8 loaves. BiAlimenta comes in 3kg boxes, but they do a variety box including gnocchi. If you want to order the fresh bread (most are codex I think) then Juvela bake once or twice a week and deliver to the chemist on set days. For me that's a Wednesday but that is worth checking also.

    Once it is set up it is worth keeping your represcriptions and setting up the chemist-doctor ordering service if you can. I tend to order from my nearest supermarket when I do the weekly shop, and they will give me a call when my order is in. Although this takes a little longer it is well worth the convenience.

    Hope this helps.

  • that should be GF foods, not DS foods!

  • coeliac Uk have a full list of all the prescription food but you do need to find out what is allowed by you PCT. There should be someone at your doctors that deals with prescriptions and you should find that person really helpful.

  • I declare at the outset my professional interest here...and for this occasion...its going to be useful...

    Although the list of approved items is on the C-UK site...what it doesnt tell..is that the amount and types of food...can and is.,..decided on a local basis by the PCT. There is no health equity. In theory there is..in practice...sorry no. The latest to cut drastically..is Dudley area. Plus, SE Alliance (Kent SurreySussex) Wirral. etc

    155 or so PCTs in UK...155 different sets of rules....

    Its one of the measures to cut NHS expenditure...and not happy situation.

    More to life than just a balance sheet...

  • As our friend Apricot is involved in the gluten free food industry and does not wish to advertise her company on here, they do wheat free gluten free food available on prescription. What I like about Wellfoods is they use maltodextrin from beet rather than wheat so I'd check them out for what is available from them in your PCT:

    wellfoods.co.uk/wellfoods-o...

    And maybe Apricot would like to keep us informed on the current cuts to prescriptions now we all know about her company and Apricot is a coeliac so one of us anyway.

  • Thanks for the link. The news about maltodextrin is good but they're using dextrose and glucose syrup (see the ingredient list).

  • Jacks,

    Yes Wellfoods does use dextrose and glucose syrup..from safe sources.

    Sourced from either beet or potato.

    PPM levels are in single figures....good enough!!

    When the ppm levels changed...didnt have to reformulate at all...others did...

    Any questions?? Always happy to assist.

    Thanks

  • Thanks for the tip Apricot and here's a link from CUK's facebook page about the prescription cuts in Dudley:

    dudley.nhs.uk/Formulary/doc...

  • Read the paperwork Jerry...note the "semolina" being suitable..

    The allowance for a toddler being same as for persons over 18....

    The talk of "health equity" ..but thats what it isnt...

    They talk of "improve cooking skills" through the Public Health Dept...(that should be very interesting...)

    No definition of whats considered to be fresh...

    " free choice"..but specified brands...

    As a Coeliac..I am not happy.

    As taxpayer..I know we have to be prudent...as a thrifty Yorkshire person...thats normal...

    I am in corrspondence with them...what results I get...or any at all...I will report back if I may...

    I am diabetic as well as Coeliac...and having a tough time...and still at work...

    Thank you for your kindness....

    Apricot

  • Thank you all for the comments - all very helpful.

    I appear to be in the same situation as Apricot here in that I am a Diabetic Coeliac and a thrifty yorkshireman as well! :-)

    I live in Hinckley, Leicestershire, and am currently unaware of the PCT situation here.

    The Dietician I have seen numerous times for both of my conditions now told me on my last visit that I am able to get foods on prescription, but went no further than that.

    I have an appointment to see my doctor early next week, so hopefully I will know more at that stage.

    Once again, thanks everyone for the help. This is a steep learning curve (again) and I really do appreciate all the help and advice I can get.

    Cheers,

    Rob

  • it will be a case of "pot luck" when you visit your GP, mine is useless and PIP codes are a real waste of time --I go to him and say I would like -------- he then accesses the prescription part of his computor and we have to trawl through the items until we ,hopefully , find the item.

    Even within the surgery there is a disparity as to how much I can have!! one GP says I can have more stuff on prescription and another says I am over my limit but he will stretch it---and the receptionists WELL some are totaly offensive and think we should get nothing, as its "only coeliac", and the one who has a coeliac friend is very good. As the Americans say "Go figure!"

    Good luck

  • My experience of prescription foods was a bit random. The doctor said he was happy to prescribe whatever foods I wanted - sounded positive! He also suggested trying different things over the first few months, sounded positive! The reality was not so good. I provided a list of the things I wanted in the first months, this included the calcium supplements he recomended for my bendy bones. I when the stuff arrived at the chemist there were only a couple of items. Some weren't available on the doctors system, some were discontinued at the suppliers etc.

    Next month I changed my list removing the failed items and added some new ones. The same happened again. In the 3rd month it took 3 weeks for the bread to arrive and other things arrived in dribs and drabs.

    As I had paid for pre-paid prescription for 3 months I decided to give up. I took the view that the items I was getting on prescription weren't exactly good for me so why bother. I now try to stay away from bread etc. and don't buy things from the free from aisle which I think makes my diet generally better but does give limited options for filling up.

    That's my story and I hope your experience is better, I would get a 3 month pre-pay and see how it goes. Good luck.

  • I have to say that up till now....I'm affected by the new prescribing in Dudley, I have never had any problems with getting prescription foods. It will be interesting to see what happens in the future. I am putting an appeal together about the dudley situation.....whole document is very insulting in it's inaccuracies.....all help in these matters would be well appreciated.

  • Hi Jill, you could write a standard letter and put a copy on here and get other members of GFG to just copy it and email it to the Dudley PCT. If you do I'd announce it on a new Blog post so all members of GFG see it.

    If I am honest I think that their hands are tied with the austerity cuts.

    They want to cut the wages of NHS staff in the SW including Bristol so things are dire but at least you'd be doing something.

    And I assume that you're referring to the Semolina gaff!!!

  • Thanks Jerry I'll do that..the semolina gaff was just one of many they've made. I can understand cuts but I like to think that stuff is done fairly and by people who are using real facts and not just the stuff they see on sensational(! )TV or read in the tabloids.

    They had other ways of doing this without putting everyone back onto cardboard lol

  • My GP was a bit hesitant when I said I would like some GF foods on prescription. I have been coeliac for 10 years so I reckon I have saved them a small fortune by only deciding now to ask for food on prescription.

    He suggested the pharmacy would be able to give me a print out of what I was allowed to order, they looked at me as if I had horns.

    I'm not allowed the ‘nice’ GF food, like the pasta I love from Tesco or asda or genius bread. But it's not too bad. I can have Juvella or Glutafin..

    I would lover to be able to get a decent breakfast cereal on prescription, I have noticed that the supermarkets don’t keep the stock up of these very well. ?

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