• coeliac disease
• gluten free food prescribing

A strict gluten-free (GF) diet is the only effective treatment for patients with coeliac disease (CD) and is a lifelong requirement in order to prevent adverse health outcomes. In the UK for the past 50 years, those with a firm diagnosis of CD have had food staples such as GF bread, pasta and flour available on prescription from their general practitioner (GP); children are among those exempt from payment. GF food prescribing is now under threat in England because of a drive to save money, confusion between CD and gluten intolerance, and the increasing avoidance of gluten as a ‘lifestyle’ choice. This should concern paediatricians when, according to the Royal College of Paediatrics and Child Health (RCPCH), one in five children in the UK is currently living in poverty (State of Child Health Report, 2017), for without free prescription of GF food some low-income families will simply be unable to afford to follow a GF diet. Clearly there is the potential to cause harm by reducing dietary compliance resulting in complications and ultimately increasing costs to the healthcare system.

GF products have recently been included by National Health Service (NHS) England in a list of ‘low value’ prescriptions,1 and Clinical Commissioning Groups (CCGs) are consulting on whether these should no longer be freely available. CCGs are NHS bodies responsible for planning and commissioning health services for a population on average of 250 000; collectively they manage an annual budget of around £74 billion, including the prescribing costs of GPs. CCGs are tasked with getting the best possible health outcomes by assessing local needs and deciding priorities and strategies. The concept of abandoning ‘low value’ prescriptions has been explained as ‘allowing local clinical leaders to make the best and most efficient use of the money … . available to spend in challenging circumstances’, effectively encouraging CCGs to make decisions about cost saving through cuts in services.1 Meanwhile, the Department of Health (DH) is also running a national consultation,2 pointing out that around 40% of CCGs have already stopped or restricted the prescribing of GF foods.

CCGs are obliged to consult with the public when proposing significant changes in services. Many describe their role as being ‘patient-centred’, with core values that include embracing patients as partners, and listening to people and valuing their experience so that they can live longer and healthier lives. It is clear that in a number of consultations the public have not been informed that there is a medical need for a GF diet in CD as the only way of preventing long-term serious complications, and CD has been confused with non-coeliac gluten sensitivity/gluten intolerance. The wording of some questionnaires appears to invite members of the public to feel mild outrage that a group of well patients are getting free food on the NHS and inaccurate national press reports claiming there are ‘tens of thousands of prescriptions every year for custard creams, doughnuts and pizzas’3 have fuelled such antipathy. The reality is that only GF staple foods approved by the Advisory Committee on Borderline Substances (an independent body advising the DH) can be prescribed for people with a medical diagnosis of CD. Feedback from one consultation which largely supported keeping GF food prescribing was ignored, and another CCG pre-empted the result of any public engagement by agreeing to develop a case for a blanket ban on GF food prescriptions in advance of any consultation. Given the increasing geographic variability in services, some GPs have complained about a ‘post code lottery’ for patients with CD.

Both the British Dietetic Association (BDA) and Coeliac UK (the charitable organisation for patients with CD with >70 000 members) strongly oppose the threat to GF food prescribing. The BDA believes that ‘removing gluten-free prescription completely is a mistake and risks impacting disproportionately upon the poorest and most vulnerable patients (and) may increase costs in the long term’.4 The arguments in favour of continuing prescribing include that strict gluten avoidance is the only available treatment for CD and the only way of preventing complications including osteoporosis, infertility, vitamin D and iron deficiency, and the small increased risk of malignancy. To these can be added growth failure, stunting and delayed puberty in children. Dietary compliance is known to improve quality of life and one study indicated that intentional gluten consumption in adult patients was significantly less in those receiving GF prescriptions. The arguments used against GF food prescribing include the current bureaucratic process, increased costs to the NHS and improvements in food labelling and availability. There is clear evidence, however, that the cost to patients of buying GF food is around four times more than non-GF alternatives, and in one study, children with CD found locating stores with GF food problematic, struggled to understand labelling and felt angry about the inherent difficulties of a GF diet. Writing in the British Medical Journal, a mother described how once her CCG had stopped GF food prescriptions, she went without food in order to afford her daughter’s coeliac diet. While some CCGs suggest natural GF alternatives like rice, potato and corn can be substituted, an isocaloric portion of rice has 90% less iron and 82% less calcium than bread; bread consumption provides around 11% of a child’s total energy intake.

The European Society for Pediatric Gastroenterology, Hepatology and Nutrition states that CD may present with a variety of non-specific signs and symptoms, and that diagnosis is important because of the negative health consequences. Clearly, dietary compliance could be considered equally important. The British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN) advises patients should have regular paediatric dietetic support initiated within 1–2 weeks of diagnosis. BSPGHAN guidance on CD was developed in association with Coeliac UK in recognition of the importance of the patient voice. The recent National Institute for Health and Care Excellence (NICE) quality standard for CD acknowledges that ‘GF products are more expensive and are usually only available from larger retailers, making access more difficult for people on low incomes or with limited mobility … CD can … . be an additional burden on the family budget … health care professionals should highlight if GF food products are available on prescription to help people to maintain a strict GF diet’. NICE also emphasises that ‘Many of the common problems associated with the long-term management of CD happen because of non-adherence to a GF diet’, and the NICE Clinical Knowledge Summary on CD (key information for GPs) includes the recommendation of the guideline development group that ‘people with CD … . should … have access to GF food prescriptions to support adherence to a GF diet’.5

Current financial constraints in the NHS have led to area-based ‘Sustainability and Transformation Plans’ (criticised by the RCPCH for lack of focus on the health and well-being of children) aimed at restructuring services and abolishing the NHS financial deficit. Some focus on ‘self-care’ as the gold standard for patients and CCGs are desperately trying to find savings by restricting services. In this context, stopping GF prescriptions could achieve an annual saving of £25.7 million in England, 0.3% of the total NHS prescribing budget. Paediatricians need to consider whether this might have a negative effect on dietary compliance in a proportion of children with CD, increasing the risk of long-term complications and resulting in even greater costs (eg, in managing osteoporotic hip fractures in later life). The current bureaucratic process of prescribing (suggested by some as requiring GPs and pharmacists ‘to behave as grocers’) could be improved. The Vale of York CCG has been using an alternative to FP10 prescriptions by giving patients a prepaid Visa card to cover the cost in shops of the difference between GF and gluten-containing staples, while NHS Scotland has introduced a Gluten-Free Food Service where a community pharmacy is the site of service delivery. Other models for reducing costs include a pharmacist-led repeat prescription management service and a web-based ordering system accessible by patients. The power of national NHS procurement could be harnessed to drive down the cost of GF food prescriptions (around 10% of the total GF food market). What seems clear is that while children with CD certainly deserve to be recognised as a special case, their voices have largely been ignored in consultations that are targeting one patient group and undermining the principle of free and comprehensive healthcare available to all.