Campaign to protect local gluten free prescription services in England
Over recent years a number of local commissioning groups in England have launched consultations on gluten free prescribing which has resulted in amended policies on gluten free prescribing. This has meant a postcode lottery, as some patients have had ceased to have access to gluten free food on prescriptions, others have had restrictions put in place, while others areas have decided that no change was required. Around 20% of local commissioning groups in England have, prior to the national consultation, taken a decision to stop access to gluten free food via prescription.
A national consultation on gluten free prescribing in England has just closed and we're awaiting a decision, but we are still seeing local ones launched, so we are fighting the campaign on a number of fronts.
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.
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 too 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 with clinically diagnosed coeliac disease. Not only do they support the most vulnerable patients in adhering to what is often a very restrictive and expensive diet gluten free diet for life, research has demonstrated that adherence to the gluten free diet is greatly improved with support through prescriptions to gluten free staples and access to dietetic services.
And it’s not just us who support prescribing:
The British Dietetic Association (BDA) supports Coeliac UK’s efforts to maintain gluten free products on prescription; removing them completely would be a mistake. Not only does NHS England risk impacting disproportionately upon the most vulnerable patients with coeliac disease, they may actually increase costs in the long term. The BDA will also be highlighting more effective alternative models for prescribing that place dietitians at the heart of the process while maintaining an appropriate standard of provision for patients.
What’s the problem?
Before the Department of Health launched the consultation into the future of gluten free prescribing in England, a considerable number of local NHS commissioning groups had held their own consultations and restricted or withdrawn access to gluten free staple foods for patients with coeliac disease. See our prescriptions map for up to date information on the prescribing in local CCGs across England.
We are concerned that these changes risk non-compliance with the gluten free diet, which increases the risk of long term health complications for patients, and costs to the NHS. We are also concerned about the lack of safeguards being put in place to monitor any changes in patient outcomes following changes to NHS support, such as monitoring or reviewing dietary adherence or health complications.
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?
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 by completing consultation surveys. Only by as many of us as possible making the case for gluten free prescribing can we win the fight for this vital service.
We have produced a briefing note for MPs on this subject, and the case for prescribing was the subject of a Westminster Hall debate last November, 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.
And of course, we're fighting a national campaign too.
We need you
But we can't do this without your help. Get involved with the campaign and help us retain this vital support.
Read more on our national campaign in response to the consultation launched by the Department of Health.