Issue 129 coeliac disease gluten free foods on prescription debate

CONDITIONS & DISORDERS

Rebecca Gasche Registered Dietitian, Countess of Chester Hospital NHS Trust Rebecca has a keen interest and specialises in gastroenterology dietetics. She currently works in the community setting in the Chester area, running clinics and group sessions to manage a wide range of gastroenterology conditions.

COELIAC DISEASE: GLUTEN-FREE FOODS ON PRESCRIPTION THE DEBATE Coeliac disease (CD) is a lifelong autoimmune disease which affects one in 100 people in the UK.1 It is caused when the body has an abnormal response to gluten a protein found in wheat, barley and rye. This abnormal response causes damage to the microvilli found within the small intestine, which can lead to gastrointestinal symptoms and the malabsorption of nutrients.

The only treatment - which reverses the damage done to the microvilli is to follow a strict gluten-free (GF) diet. For decades patients with CD have been entitled to GF food on prescription. However, in more recent years, some clinical commissioning groups (CCGs) are now restricting or completely stopping this. Currently around 40% of CCGs in England have taken this decision.2 Since becoming available on prescription in the late 1960s, many patients with CD have utilised the option to receive GF foods to help manage diet and in turn their health.

A prescribing guide - Gluten Free Foods: a revised prescribing guide 20113

- was developed to assist GPs and healthcare professionals with the availability of foods on prescription.

It states that bread/rolls, breakfast cereals, crackers/crispbreads, flour/ flour-type mixes, oats, pasta and pizza bases are all available on prescription and approved by the Advisory Committee on Borderline Substances (ACBS).3 So, why stop it? And what impact may it have on this patient group?

THE DEBATE AGAINST

It’s hard to go a day without reading headlines around the NHS and its financial debts. Recent statistics state that the NHS net deficit for the 2015/16

Table 1: The availability of gluten-free foods on prescription in primary care.6 Product White bread

NHS Indicative Price (Price per 100g)

GF product price per packet (price per 100g)

Branded non-GF equivalent price per packet (price per 100g)

£3.69 (92p)

£1.94 (43p)

£1 (12.5p)

£6.73 (£1.34)

£1.57 (45p)

£1.22 (22.9p)

Cornflakes

£3.48 (93p)

£1.72 (48p)

£1.75 (35p)

Plain flour

£3.10 (62p)

£1.62 (17p)

£1.44 (14.4p)

Oats

£2.78 (56p)

£2.30 (49p)

£1.04 (20.9p)

£3.46 (£1.73)

£2.08 (£1.37)

£1.36 (45.3p)

£23.24

£10.47

£7.81

Pasta

Biscuits Total price (one of each item)

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CONDITIONS & DISORDERS

Those who argue that GF food on prescription should be stopped feel that this decision plays an important role in managing the NHS finances, allowing room for more funding for other treatments. financial year was £1.851 billion4 and the provider deficit for the 2016/17 financial year has been confirmed at £791m.5 Those who argue that GF food on prescription should be stopped feel that this decision plays an important role in managing the NHS finances, allowing room for more funding for other treatments. James Cave, a general practitioner, argues that, “It’s ludicrous for the NHS to be treating a food product as a drug and to require GPs and pharmacists to behave as grocers.” He goes on to explain how the “complex rules” on what can be prescribed can often cause stress, confusion and be a timeconsuming process for both patients and GPs. What may be his strongest argument, is pointing out that GF food on prescription is far more expensive than the supermarket price. “The NHS pays up to £6.73 for 500g of pasta, yet 500g of GF pasta will cost £1.20 at a supermarket”.2 These figures do not include the dispensing fee which is charged on top of all prescriptions.

Table 16 on the previous page demonstrates the differences in prescribed, non-prescribed and non-GF products.

Simon Stevens, the chief executive of NHS England, also feels that GF foods on prescription should end. He argued in an interview with The Daily Mail that the NHS is spending over £22 million on GF products that you can also now buy at Morrison’s, Lidl or Tesco.7 Staple GF foods were first available to patients in the 1960s, when the availability of GF foods was limited. They are now readily available in supermarkets, as well as a wider range of naturally GF food types being available,8 meaning that the ability to obtain these foods without a prescription has become much easier.

Simon Stevens leads on to make a point that the stopping of GF foods on prescription is to ensure that the NHS makes enough headroom to spend money on innovative new drugs.7 A 26

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further argument from health minister, Lord O’Shaughnessy, to support this said: “The NHS is one of the most efficient health services in the world, but we need to do more to ensure that we get the best possible value for taxpayers’ money. Changing the way we prescribe GF food could make an important contribution to saving the NHS millions of pounds a year.”8 GF foods are within the category of ‘Other Food for Special Diets’, which had the greatest net ingredient cost (NIC) in 2015, as published in the Prescriptions Dispensed in the Community: England 2005-2015 report. The amount totalled £99.7m, of which GF foods accounted for £26.8m.6 So, how is this working out so far? Many CCGs have already stopped providing GF foods on prescription. Norwich and North Norfolk CCGs decided to end prescribing of GF foods, except in exceptional circumstance.

This resulted in the spend of £400,000 on GF prescribing in 2015, falling to just £21,000 in 2016. Norfolk CCG report that this has allowed them to have more money available for other treatments, and that they have received mostly positive feedback from both members of the public and GPs on this decision.8 Further to these points, the availability of GF foods on prescription may result in patients becoming accustomed to receiving them to supplement their food shopping. Some patients may put pressure on their GPs to prescribe nonstaple products, or larger quantities, especially if they are exempt from prescription charges, to feed other family members and to avoid separate meal preparation. We must also take into account that research has suggested that some (albeit a minority of) GPs will prescribe GF products if a patient requests it, without confirming a diagnosis of CD.6 This could be an increasing problem as the ‘trend’ of following a GF diet (GFD) grows.

On the other side of the debate, we see experts argue that removing prescriptions for GF products unfairly discriminates against people with CD, may lead to severe health concerns for patients and long-term costs to the NHS. A final argument is that although the only treatment for CD is to follow a GFD, this does not mean that patients need alternative breads/pastas/cereals to manage their disease. There are many naturally GF grains, such as rice, potatoes, oats and quinoa to name a few, that patients can base their meals around. GF products are, therefore, not a necessity and some feel are incomparable to medications that treat other autoimmune diseases. To further argue against the fact that GF foods on prescription help with adherence to a GFD, there have been systematic reviews which demonstrate that the existing evidence for factors associated with adherence to a GFD is of variable quality9 and that options for the standardised evaluation of adherence remain unsatisfactory.10 THE DEBATE FOR

On the other side of the debate, we see experts argue that removing prescriptions for GF products unfairly discriminates against people with CD, may lead to severe health concerns for patients and long-term costs to the NHS. With a GFD being the only treatment for CD, is it fair to discontinue this? The National Institute for Health and Care Excellence’s quality standards for coeliac disease11 highlights the role of prescriptions to ensure that the diet is affordable and accessible for all patients. The experts say that there is no other example in the NHS of a disease having its treatment costs cut by 50-100%, and ask if CCGs would consider this if the treatment for CD were an immunosuppressive drug and not food?

Gastroenterology experts David Sanders and Matthew Kurien, along with Sarah Sleet, Chief Executive of Coeliac UK, argue that understandably the NHS needs to find ways to cost save and that GF food prescriptions might seem like an easy target for CCGs trying

to make savings. However, when compared to the overall spending of the NHS prescribing budget, annual prescription costs for GF foods were £25.7m in England last year - just 0.3% of the total budget.2 On another financial aspect of the argument, the fact that GF foods are markedly more expensive (see Table 1) and limited, patients should be entitled to have them on prescription.

When looking at the short-term cost of GF prescribing for long-term savings, a good example is the increased risk of osteoporosis in coeliac patients who do not follow a strict GFD. NICE estimated that the cost of GF food on prescription was £194.24 per patient per year based on NIC.12 A hip fracture caused by osteoporosis, the most common complication of untreated CD, costs on average £27,000 per fracture,13 the equivalent to 138 years of prescribing GF staples for an individual.

This demonstrates that, in fact, GF food on prescription is a low cost treatment for a lifelong autoimmune disease and by contrast, treatment of long-term complications such as osteoporosis or intestinal lymphoma risks a concerning financial impact on the NHS, not to mention the significant burden for patients.

In addition to this, in the argument that prescription products should be replaced with naturally GF grains, Coeliac UK amongst others, has raised valid points with regards to nutritional composition of these foods. CD patients have higher calcium requirements - 1000mg/day14 as opposed to 700mg/day - and may be more at risk of suffering from iron deficiency anaemia due to gut damage.

Therefore, obtaining the correct amount of nutrients from their diet is essential for health and to prevent long-term complications.

Cereals and cereal products contribute significant amounts of iron and calcium to the diet. Data from the National Diet and www.NHDmag.com November 2017 - Issue 129

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CONDITIONS & DISORDERS Nutrition Survey shows that cereals and cereal products contribute 44% of total iron intake and 30% total calcium intake to the diet.15 As suggested in the against argument, replacing 72g GF bread with a portion of rice containing the same amount of calories would reduce the iron content by 96% and the calcium content by 90%.16 Similarly, replacing GF bread with a portion of peeled, boiled potatoes containing the same amount of calories would reduce the iron content by 71% and the calcium content by 93%.

The government’s own Eatwell Guide suggests that our diet should consist of one third wholegrains. Many people with CD rely on prescription foods to meet this, and those who will be most affected by the withdrawal of prescriptions are likely to be the least able to manage the complexity of the dietary changes required to maintain this recommended nutritional balance.17 Finally, a number of studies are cited in support of the use of GF foods on prescription.

For example, research from King’s College London concluded that due to the limited availability of GF foods in different stores and increased cost, having access to a range of GF food on prescription is important to

support people with CD and help them meet their nutritional needs.18 When looking at the availability of GF staple foods, research has also suggested that it is not consistent in retail outlets. There is poor availability in budget supermarkets, corner shops and smaller stores.18,19 Further research undertaken by Coeliac UK suggests that access to GF food on prescription is viewed as the most important factor for people with CD in terms of adherence to a GFD, with 86.6% citing it as an important factor in maintaining the GFD and 47% citing this as the single most important factor.20 CONCLUSION

Unfortunately the current situation for GF prescribing appears unfair, with different areas in the UK offering varying options for patients. No one can say what the impact on discontinuing GF foods on prescriptions will have - it may seem like a short-term gain financially, but is the NHS overlooking the serious long-term complications that may happen as a result? Or is the NHS prescribing an irrational product, should the money saved be put towards treatments which have no other option in treating the disease? Lots to think about…I’ll let you make up your own mind.

References 1 Coeliac UK. www.coeliac.org.uk/coeliac-disease/about-coeliac-disease-and-dermatitis-herpetiformis/ 2 BMJ Press Release. Should gluten-free foods be available on prescription? 2017. www.bmj.com/company/wp-content/uploads/2017/01/gluten-freefoods.pdf 3 Gluten Free Foods: A Revised Prescribing Guideline 2011. (2011). www.coeliac.org.uk/gluten-free-diet-and-lifestyle/prescriptions/ national-prescribing-guidelines/ 4 NHS England, Annual Report 2015/16 5 NHS Improvement, Quarterly performance of the NHS provider sector: quarter 4 2016/17 6 The Availability of Gluten Free Foods on Prescription in Primary Care. Department of Health. 2017. www.gov.uk/government/uploads/system/uploads/ attachment_data/file/604842/Gluten_free_foods_cons.pdf 7 www.theguardian.com/society/2017/mar/28/nhs-draws-up-list-of-items-to-be-banned-from-prescriptions 8 www.gov.uk/government/news/consultation-launched-on-prescribing-of-gluten-free-foods 9 Haines ML, Anderson RP, Gibson PR. Systematic review: The evidence base for long-term management of coeliac disease. Aliment Pharmacol Ther 2008; 28(9): 1042-66. www.ncbi.nlm.nih.gov/pubmed/18671779 10 Leffler DA, Edwards George JB, Dennis M et al. A prospective comparative study of five measures of gluten-free diet adherence in adults with coeliac disease. Aliment Pharmacol Ther 2007; 26: 1227-35. www.ncbi.nlm.nih.gov/pubmed/17944737 11 NICE Coeliac Disease Quality Standard QS134, 2016. www.nice.org.uk/guidance/qs134 12 NICE NG20: Coeliac disease; recognition, assessment and management Appendix G HE Report. 2015 13 NICE Clinical Guideline CG124: The management of hip fractures in adults. 2011. www.nice.org.uk/guidance/cg124 14 NICE NG20: Coeliac disease; recognition, assessment and management. 2015. www.nice.org.uk/guidance/ng20 15 Henderson L, Irving K, Gregory J, Bates CJ, Prentice A, Perks J, Swan G, Farron M. National Diet and Nutrition Survey: adults aged 19-64 years vitamin and mineral intake and urinary analytes. 2003 16 O'Connor A. An overview of the role of bread in the UK diet. Nutrition Bulletin, 2012. 37(3): p. 193-212 17 Document: Department of Health consultation response. Coeliac UK. 2017. www.coeliac.org.uk/ document-library/4509-department-of-health-consultation-response/ 18 Singh J and Whelan K. Limited availability and higher cost of gluten-free. Journal of Human Nutrition and Dietetics, 2011 19 Burden M et al. Cost and availability of gluten-free food in the UK: in store and online. Postgraduate Medical Journal, 2015: p. postgradmedj-2015-133395.

20 Food Information Research, Coeliac UK, 2006 Unpublished

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