Starting to Gather Answers…

So today I had a reply from Coeliac UK following my enquiry into prescriptions (see my earlier post)

The response I got was pretty much what I expected, but it filled me with hope that people such as those at Coeliac UK are trying to make gluten free life easier for us Coeliacs.

Their reply echoed that other members of Coeliac UK had been having similar problems to me – finding that their prescriptions were either completely stopped or restricted to very few items.

By the looks of things, the problem lies in the NHS Primary Care Trusts making cutbacks, which has therefore resulted in Coeliacs having their prescriptions taken away from them.

They said:

"We see this as a soft option in their attempts
to reduce expenditure, representing a short-sighted approach which could
seriously damage the health of many patients. We are committed to
working with PCTs to help them meet the needs of their patients with
coeliac disease and DH using the well-established guidelines that are
already in place. " 

It would seem then, that this is currently an issue that some Coeliacs are experiencing across the country. But Coeliac UK are trying their best to see a happy ending.

They sent me some reference materials, which I shall shortly be looking over, regarding prescription guidelines for GPs. They have also offered to get in contact with my PCT regarding the issue of gluten free prescriptions.

Although I am really pleased at how helpful Coeliac UK have been, I still feel that this is such  unjustice against Coeliacs. We did not choose to be on a gluten free diet – it is not just a small allergy, it is an autoimmune disease which, if we do not receive the correct food, can be serious.

It is this fact alone that makes me so angry to have my prescriptions taken away from me, and I will be looking further into this issue.

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2 Comments

  1. Sue
    March 13, 2010 / 09:56

    Sarah, please keep trying and pestering your Doctor. I have been reading your blogs this morning with interest and I see you come from Braunton. I presume you didn’t have trouble with prescriptions at home but now you have had to re-register with a Doctor at uni things are different. As you say, you have a prescription charge exemption form (it is not automatic for students to get free prescriptions, you have to apply on low income grounds) and I would think it worth pestering the Doctor further. Different PCTs around the country are dictating what people can and cannot have, but it is worth pointing out to your Doctor that the reason gluten free food is normally prescribed is so that people will adhere to the gluten free diet and therefore avoid other health problems later. I personally rarely buy any of the supermarket free from foods as they tend to be much higher in fat and sugar than some of the prescribable items and I also feel the supermarkets are out to make as much money as they can out of folk like you and me.

    I presume you are away at the moment, but did yo know that CUK have a local group which meets just outside Barnstaple and we have interesting talks, and cookery demonstrations etc. In fact it is the AGM this afternoon (13th March) and it is at 2.30 pm in Bickington Hall, Bickington, Barnstaple. Many people come from far around, in fact the Chairman lives about 40 miles away and I live 35 miles away in Cornwall.

    I saw on one of your posts someone commented about you eating a lot of porridge. Did you know that the official advice from CUK is not to eat them without checking with your health professionals first, and to introduce them slowly. Also, I think there is a limit as to how much you can have (about 50g per day I think) and the most important thing of all is that you cannot just walk into a supermarket and pick up any old packet of porridge oats. There are very few brands that are suitable for us as most are contaminated by wheat and other grains during the growing and manufacturing processes. The only ones you should eat are in the CUK Food directory.

    Hope this helps.

    Sue

  2. sarahhowells
    March 13, 2010 / 22:42

    Hi Sue,
    Thanks for your comment, I’m glad you have found my blog and enjoyed it. I am currently in the process of switching back to my old doctors where I will be getting my prescriptions again, thank goodness!
    It’s good to see you’re from North Devon. I am away this weekend but when I come back for the summer I would really like to attend some of the North Devon CUK meetings as it would be good to meet other Coeliacs! I see there is one in Arlington in May, and I am hoping to come along to this one.
    I checked with my doctor about introducing oats to my diet several years ago, and didn’t have a problem with them at all. Recently though I started feeling a bit ill again so I have cut them out now and am feeling a lot better – thankyou for your advice!
    Thankyou for your advice, it has been really useful and I hope that you will keep following my blog as I have some (hopefully) interesting ideas to develop it’s content soon!

    See you at one of the CUK meetings 🙂

    Sarah

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