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Clarification on the PrescQIPP guidance for gluten-free foods

In response to the comment piece written by Tony Cartwright, ‘NHS gluten-free food controversy does no favours for coeliacs’ (The Pharmaceutical Journal 2015;295:324), we would like to point out some inaccuracies on the statements around the PrescQIPP guidance on gluten-free foods.

PrescQIPP is a not-for-profit organisation that is funded only by subscriptions from NHS organisations. We have no outside funding from product manufacturers or suppliers and are therefore able to ensure our bulletins are unbiased and evidence based. We do, however, consult with relevant stakeholders on our materials. Our bulletins and toolkits are driven by the commissioners in England, Wales and Northern Ireland, and are available for commissioners to adapt locally and use however they see fit to best serve their local populations. We solely provide evidence-oriented recommendations and fully support local decision making.

Cartwright suggests that the PrescQIPP bulletin only recommends prescribing approximately 50% of the recommended monthly units of gluten-free products. However, he fails to add that the quantities recommended in the PrescQIPP bulletin relate to the quantities recommended per month that should be prescribed for bread and flours in the Coeliac UK Gluten-free foods prescribing guidelines (updated in 2012).

Cartwright also wrongly suggests that the bulletin only recommends plain flours. The PrescQIPP bulletin recommends that bread and flours, including mixes, can be prescribed on the NHS because these products are generally more costly to purchase than gluten-containing alternatives. The bulletin was updated in 2015 (the version referenced by the author) to include mixes based on feedback from patients. The bulletin does not recommend items that incur delivery charges because these are not cost effective for the NHS to supply. It also does not recommend prescribing pasta and pizza bases because these could be purchased for not much more than the gluten-containing versions and therefore should be purchased by patients as part of self care.

Self care is an important part of treating any long-term condition. Cakes and sweet treats are not recommended for prescribing because they do not form part of a healthy diet. Cartwright refers to a study done in 2015 by the University of Sheffield surveying the availability of gluten-free foods in supermarkets. This study is not readily accessible and was a poster presentation at a Coeliac UK conference. We have been unable to verify these figures and have not received any of this information from Coeliac UK in our correspondence with them. 

Cartwright also suggests there are inaccuracies within the bulletin. Coeliac UK has also suggested this in our correspondence with it but, to date, it has not been able to clarify exactly what these inaccuracies are and the author has also not specified what these inaccuracies are.

Carol Roberts

Chief executive officer

PrescQIPP NHS Programme

 

Tony Cartwright responds: PrescQIPP’s website claims to improve care to patients through the provision of evidence-based resources. However, its guideline on prescribing of gluten-free foods omits any reference to their importance in terms of adherence to the diet – which is particularly important given the variable dietary adherence (42–91%) of patients. It does not consider the health consequences and the subsequent cost to the NHS of poor adherence in patients with a lifelong condition for which gluten-free foods are the only treatment.

The guideline claims that gluten-free foods are now much easier and accessible to purchase when the evidence is that there is only limited availability across the different categories of supermarket. This particularly affects those on fixed incomes and those with limited mobility. PrescQIPP can, of course, be supplied with a copy of the poster presentation by Burden et al, but this only confirms the findings of the earlier study by Singh and Whelan (which PrescQIPP has already seen) on availability of gluten-free foods.

Page 1 of the recommendations in the guideline refers to ensuring that ‘prescribed quantities do not exceed six to eight units of bread or flour’. I am delighted to learn that the guideline actually means that it accepts the Coeliac UK national guideline amounts. What a pity therefore that three clinical commissioning groups (CCGs) have ignored this advice completely and have stopped prescribing gluten-free foods and others have slashed the amounts allowed, thus creating the postcode health lottery I described in my article.

The PrescQIPP guideline contains inaccurate information on the cost to the NHS of gluten-free bread and it includes prescribing data on cakes and desserts, which are not included in the Advisory Committee on Borderline Substances list in the Drug Tariff and are thus not available on prescription. The list of products cited in the guideline omits bread rolls. Handling charges are not made on most products. The data on the total cost of a gluten-free diet are incomplete because the gluten-free versions of many other products such as sausages, pies etc. are also more expensive. Although the PrescQIPP guideline now includes flour mixes (after protest from patients), it particularly recommends a list of individual flour products (such as the Ethiopian teff flour) as being cost-effective, even though they are impractical to use.

Pharmacists in the CCG areas could play a major role in helping to recognise coeliac patients, and support them with a cost-effective pharmacy supply scheme for gluten-free products. This would be supported by all stakeholders: GPs, pharmacists and patients. What a shame PrescQIPP is not considering how to support them by doing this. It could start with the evaluation report on the Bedfordshire CCG gluten-free pharmacy supply scheme, which has its own website and represents best practice.

Citation: The Pharmaceutical Journal DOI: 10.1211/PJ.2015.20200051

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