A recent Department of Health consultation on the availability of gluten-free foods on prescription for patients with coeliac disease prompted BSNA to seek the views of patients, along with parents and carers of sufferers, to understand the role of a gluten-free prescription in managing their lifelong condition. A patient survey was undertaken and the questions were tailored to inform the Department of Health consultation with a focus on specific product categories, support and access to healthcare. There was also an opportunity for respondents to include comments on the potential impact of removal of gluten-free prescriptions.

The responses were used to help BSNA formulate an official response to the Department of Health consultation. In total, over 4000 survey responses were received over a period of 6 days. Of these, 3964 responses were analysed. The remaining were excluded as a result of not having a diagnosis of coeliac disease or because they did not consent to their data being used. Just over 2/3 of respondents were female and 70% of respondents still received gluten-free foods on prescription.

The key findings of the survey are summarised below:

Patient support

The role of a gluten-free prescription in supporting patients to manage their condition is clearly demonstrated in the recent patient survey, where over 86% of respondents receiving gluten-free products on prescription felt that this was ‘the most important’, or ‘an important factor’ in helping them to adhere to treatment. Interestingly, the survey also found that approximately 3/4 of respondents receiving gluten-free prescriptions were accessing added value support services from manufacturers of prescription products. These services include access to specialist dietitians via carelines, specialist events and resources all focused on supporting management strategies recommended by NICE and healthcare professionals. Over 1/2 of those accessing these services were doing so at least once a month and over 55% felt that this support helped them to adhere to a gluten-free diet.

Annual review

Over 75% of respondents who received a prescription have also received an annual review. This can be compared to over 1/3, not receiving a prescription and who did not receive an annual review. This suggests that provision of a gluten-free prescription facilitates regular, ongoing access to a healthcare professional in line with the NICE Quality Standard, which states that patients with CD should be offered an annual review.

Specialist gluten-free products

One of the consultation options, option 3, focused on limiting gluten-free prescriptions to gluten-free specialist products, including gluten-free bread and flour. Therefore, in order to formulate our response, we asked patients with coeliac disease how they perceived both gluten-free bread and flour.

Gluten-free bread

The survey revealed that 97% of respondents ate gluten-free bread at least once a week, with 76.6% consuming bread daily. When asked how important bread was in helping to adhere to a gluten-free diet, over 94% stated it was ‘important’, or ‘very important’.

Gluten-free flour

The patient survey also found that nearly 70% of respondents preferred to use an all-purpose gluten-free flour mix over plain gluten-free flour. The reasons cited for this preference included ‘easier to use’ (45%), and ‘can be used as a direct replacement to ordinary flour in recipes’ (44%).

Written responses

The survey allowed respondents to provide comments on the potential impact the removal of gluten-free prescriptions may have in their ability to manage their condition. The biggest concern amongst patients was finance, especially for those on pensions, low incomes or those who had more than one family member suffering from coeliac disease.

The vast majority of respondents who provided comments also stated that, because of this, they were less likely to adhere to a gluten-free diet. Patients also expressed concern on the availability of gluten-free products and having to rely solely on retail product availability, due to location and supply.

Unfortunately, a small number of respondents, since losing their prescription, have noticed a worsening in their health, and a few respondents spoke of the mental impact it would have on them if they were to lose their prescription.

BSNA submitted its official response to the Department of Health on 21 June, which included the points above.

We would like to thank all of those who participated in the survey.

The survey results can be found here.