Gluten free prescribing

Healthwatch Devon was approached by North, East and West Devon Clinical Commissioning Group (NEW Devon CCG) to support their survey regarding the prescription of gluten free products. People in the area covered by NEW Devon CCG can be prescribed gluten free foods if they have a confirmed diagnosis of coeliac disease or dermatitis herpetiformis (DH). In 2015/16, NEW Devon CCG spent more than £560,000 on prescribing gluten free foods.

In recent years, awareness of coeliac disease and DH has increased and gluten free products have become more readily available to buy from supermarkets and online. Whilst gluten free foods can be more expensive to buy than their gluten containing equivalents, direct purchase from supermarkets tends to cost significantly less than the NHS price. NEW Devon CCG therefore were seeking views on the prescribing of gluten free foods on the NHS for adults and children with coeliac disease or DH.

The survey was developed by NEW Devon CCG and Healthwatch Devon, and reviewed by Coeliac UK’s Exeter and East Devon local group.

The survey was made available through Healthwatch Devon and promoted to appropriate local groups. 621 people completed the survey. The demographics of those who responded are included at the end of this report.

Healthwatch Devon also received a formal response from Coeliac UK and a number individual letters and emails highlighting people’s concerns should a change in prescribing be the outcome.

Most respondents to the survey (63%) were people with a diagnosis of coeliac disease or dermatitis herpetiformis (DH). The second largest group of respondents (18%) was health professionals. Of those with a diagnosis, half (48%) had been diagnosed within the last ten years, and two thirds (64%) within the last twenty years. Responses came from all parts of the county, with two-thirds of respondents living in rural or “edge of town” areas. 81% live within 20 minutes travel from a shop selling gluten free food.

Two thirds (64%) received gluten free foods on NHS prescription. Within the multiple choice answers, the most common reason given was that supermarket alternatives are too expensive. The second most common reason was that gluten free prescriptions are a right.

Within the free text comments, the two most common themes were the lack of availability of gluten free products and the poorer quality of products not on prescription. Respondents commented that they couldn’t get prescription brands in the local shops, and that these brands were considered to be higher quality, either in terms of taste or nutritional value.

Another related comment was that many of the supermarket gluten free products contain high levels of sugar, which can cause additional problems. The other common comment was the cost of products at supermarkets. The most commonly used prescription foods were flour, pasta and bread. The least common were sweet biscuits and cakes.

One quarter (26%) of survey respondents did not get gluten free food on prescription. Of those respondents diagnosed with, of caring for someone diagnosed with coeliac disease or DH, only 11% do not receive gluten free products on NHS prescription. Within the multiple choice answers, over half (55%) said that they did not agree with gluten free food being prescribed, or were happy to pay for it in the shops. Over a quarter (28%) said that the choice in the shops was better than on prescription. 78 people responded within the free text comments. However, the majority (44) said that the question was not applicable as they were not coeliac, or were a healthcare professional.

Responses to the CCG’s prescribing options showed that most people anticipated significant impact on health from “no gluten free prescriptions” (78% with significant impact) and “restriction of prescriptions to under 18’s” (63% with significant impact). Reaction to “limited prescription” was more evenly spread, and 70% anticipated no impact from non-prescription of luxury items. Most respondents felt that there was sufficient information on managing coeliac and DH conditions, and that there was sufficient food available in supermarkets or on-line.

However, three quarters saw supermarket gluten free food as unaffordable. Two thirds anticipated difficulties and complications if prescriptions were restricted. Over three quarters thought it appropriate that the NHS should provide gluten free food on prescription.

Three quarters saw prescription of gluten free food as being of high importance to the management of their condition. When asked how people could be better supported to manage their condition, the top three comments were: Support and ongoing monitoring, annual check-ups, support groups etc; reduce the cost, put pressure on manufacturers and/or supermarkets; increase awareness, including: health professionals, food retailers and the general public; “Other” comments reflected points already made in survey responses, particularly around the availability, quality and cost of gluten-free food.