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  4. Campaign to protect local gluten free prescription services in England

Campaign to protect local gluten free prescription services in England

Over recent years a number of local clinical commissioning groups (CCGs) in England have launched consultations on gluten free prescribing which has resulted in a variety of policies. This has meant a postcode lottery, as some patients have had access to gluten free food on prescription removed, some have had restrictions put in place, while other areas have decided that no change was required. See our prescriptions map for up to date information on the prescribing in local CCGs across England.

We have now have received a decision from the Department of Health and Social Care on the future of gluten free prescribing to retain access to gluten free breads and flour mixes on prescription in England. We will be involved in the development of the final regulations around the decision which will need to be formally agreed by Parliament. This is likely to take many months and we will be working to ensure the final outcomes work for patients with coeliac disease.

Meanwhile, some CCGs may decide to change their local policies to bring them in line with the Department's announcement and some may wait until the regulations are in place.

Out priority will be to help individuals in areas where access to gluten free food on prescription has already been withdrawn. 

It’s important to realise that CCGs can still decide their own local prescribing policies which may adjust how much food can be prescribed or put further conditions on what is available and who can receive it. We will identify where access to prescriptions has effectively been removed and challenge those CCGs to review and reverse their actions which are certainly harder to justify in light of this decision announced by the government.

Are prescription foods really necessary?

Yes. Whilst gluten free staple foods are more widely available today than ever before, they are still not readily accessible across the country. This has now been recognised nationally by the Department of Health and Social Care following their review of access to gluten free food on prescription.

In many budget or convenience stores, research shows that gluten free staples are virtually absent. What’s more, those that are available are prohibitively expensive for many people, costing three to four times more than regular gluten containing foods. The result is that those on a limited income, the elderly or those living in remote rural areas can be left struggling to maintain a gluten free diet which has a huge impact on their health.

We feel strongly that the prescribing of gluten free foods is an essential NHS service that should be available to all people diagnosed coeliac disease. Access to prescriptions supports the most vulnerable patients in adhering to what is often a very restrictive and expensive diet, and research has demonstrated that access to prescriptions and dietetic services supports adherence to the diet.

What is the truth about cost?

Many health commissioners are stating that gluten free food is readily available and that costs of gluten free food has come down. This is simply not true. Gluten free products are usually smaller and so gram for gram, they are 3-4 times more expensive which is a real issue for people with coeliac disease, and gluten free bread is on average 5 times more expensive. You can read more about the real costs of gluten free food here.

What is Coeliac UK doing?

Over the last three years, where local consultations are being launched, we have been contacting local members by post, email and through social media to ensure you have the chance to have your voice heard. 

We have produced a briefing note for MPs on this subject, and the case for prescribing was the subject of a Westminster Hall debate, tabled by Kevan Jones MP.  Read the full transcript of the debate.  

The media are particularly important too so that we can increase awareness of the issue. We have focused our attention on media in areas where prescriptions have been cut or there are consultations going on. See our media centre for the latest press releases we have issued.

Now that we have the results of the national consultation, we will be challenging the decisions made by some CCGs to remove routine access to gluten free food on prescription and will keep you updated with our progress.

More Campaign to protect local gluten free prescription services in England links  
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