28 March 2017

We are deeply disappointed that the proposed removal of an NHS service for people with coeliac disease, access to gluten free staple products via prescriptions, has been announced in an interview to the Daily Mail by the chief Executive of NHS England, Simon Stevens.

Coeliac disease is a serious autoimmune condition caused by a reaction to gluten, a protein found in wheat, barley and rye. The only treatment is a lifelong strict gluten free diet. This is much more difficult than it sounds as demonstrated consistently in independent research.

Gluten free prescribing protects vulnerable patients who must maintain a strict gluten free diet for the rest of their life if they are to avoid very serious complications such as osteoporosis, infertility and even a rare small bowel cancer. Access to prescriptions has been shown to help maintain the diet.

Chief Executive of Coeliac UK Sarah Sleet said: “I am very concerned that vulnerable and elderly patients today will be waking up to the headlines that prescriptions for the breads and flours that they rely upon as part of a healthy balanced diet will be removed in one fell swoop. The worry and distress this will cause should not be underestimated.

“Although Mr Stevens goes on to talk about a consultation on the proposals the clear impression is that this is a done deal.

“Furthermore the comments he makes about availability of such products, for example in Lidl, show the lack of understanding about the reality of access. In fact Lidl for example do not routinely stock such products. Research shows that budget and convenience stores, which are relied upon by the most vulnerable such as the elderly, those with disabilities and on low incomes, have virtually no provision.”

Mr Stevens also misleadingly implies that significant sums are spent by the NHS on biscuits and cakes. He will know that guidance, backed by Coeliac UK, for many years has rejected such spend.

It is also stated that ‘the price of gluten free alternatives has come down substantially’. This is not backed up by the evidence. Industry data since 2008 demonstrates that the cost difference between gluten free bread and its gluten containing equivalents is six times. This has not reduced throughout that period.

Replacement of breads with rice and potatoes, as some suggest, risks the nutrient content of the diet. For example rice has 96% less iron and 90% less calcium, while potatoes has 71% less iron and 93% less calcium.

There are inefficiencies in NHS procurement. Coeliac UK has championed alternative, more cost effective systems to support patients with coeliac disease. We would welcome national backing for such schemes which has been lacking to date. Patients should not pay the price for inefficient NHS procurement practices.

At 0.02% of the NHS budget, gluten free prescribing is very cheap and helps some of the most vulnerable in our society with a lifelong disease. It may prove cheaper than the risk of complications as a result of not sticking to the diet in the long run.