Gluten Free Prescribing Engagement Survey Report Summer 2016
Background Coeliac disease is an autoimmune disease which is triggered by ingesting gluten. The symptoms vary between individuals and there is also a small risk of cancer associated with the disease. The only treatment is to completely avoid gluten in the diet. Within the NHS, gluten free products have been made available on prescription as part of the Advisory Committee on Borderline Substance (ACBS) list. Sunderland CCG currently recommends a limited list of products from this to exclude luxury items. The British Society of Gastroenterology and Coeliac UK have produced a prescribing guidance for gluten free product quantities, based on energy requirements. Respondents to the survey We received 179 responses to the survey during the consultation period (July to August 2016). Most of these came from people with a diagnosis of coeliac disease (n=124) and parents or guardians of children with coeliac disease (n=13) which represents approximately 17% of patients with coeliac disease in Sunderland. Other respondents included people with suspected coeliac disease (n=4) carers of someone requiring a gluten free diet (n=3) and family members (n=5). We also heard from members of the public (n=13), employees of the NHS (n=12) and received four responses from organisations including the British Specialist Nutrition Association, Old Forge Surgery Patient Participation Group, British Society of Gastroenterology and Coeliac UK. Where individuals responded, there was a good range of ages and postcodes from within the Sunderland boundary. Some of the respondents indicated that they have a disability (16%) and the majority identified as being straight or heterosexual (88%). Most of the respondents were female (74%) and White (94%). For patient respondents there was a range for length of diagnosis, but with a majority of patients having the disease for more than 10 years (32%). Diet of respondents Most respondents consumed carbohydrates which are naturally free of gluten including potatoes (95%) or rice (86%). Bread was the most common gluten free product people used, with pizza being the least (See Figure 1). Bicuits or crackers Respondents indicating which carbohydrates they include in their diet Potatoes Bread Pasta Rice Cereal Cakes Pizza 0 20 40 60 80 100 120 140 160 Number of survey respondents Included in diet Not included in diet Figure 1: Different carbohydrates that survey respondents indicated they include in their diet 2
Where gluten free products are sourced from The majority of respondents bought gluten free products alongside receiving items on prescription. The item which was most commonly sourced on prescription was bread (n=92) with the least being cakes (n=2). This is in line with current policy around items luxury on prescription. However, gluten free flour on prescription seems to be being used to make these items by patients themselves (See Figure 2). Bread was also highlighted by the British Society of Gastroenterology and Coeliac UK as being an important source of vitamins and minerals due to its fortification. Figure 2: Where patients source their gluten free products from Most respondents also froze gluten free products (78%). This is important when obtaining fresh products that often have a short expiry date. When asked where they would like to get their products from, most respondents cited that they would prefer from a pharmacy (62%) rather than a supermarket (39%) although comments suggested that a combination helps to get the most variety: My 10 year old coeliac son only likes some brands, some bought, some on prescription. His diet is so limited as he is a very picky eater since diagnosis, if the brands that are only available on prescription were taken away, I genuinely don t know what he would eat. Respondent 69 It was also highlighted in comments that not all supermarkets and convenience stores stock gluten free products and those patients with limited transport options may not be able to travel to other outlets. 3
Accessibility of gluten free products There were mixed responses around the availability of gluten free products. The most readily available product reported was pasta, followed by bread. The most difficult items to obtain were pizza and cakes. This may be linked to availability on prescription (See Figure 3). Reported difficulty from survey respondents on obtaining gluten free products Pizza Biscuits or crackers Cakes Cereal Bread Very Easy Easy Difficult Very Difficult Pasta 0% 20% 40% 60% 80% 100% Percentage of respondents Figure 3: Reported difficulty obtaining gluten free products Comments highlighted the potential variability of items on prescription: We are restricted enough through the amount we can order [on prescription] during [one month] and this varies from GP to GP to amount and what you can choose. Respondent 67 The dietetic department at City Hospitals Sunderland NHS Foundation Trust also highlighted this variability in their response to the consultation: Over the last few years there seems to be more inequity regarding access to these products on prescription in the area with a number of our patients reporting already that they do not get access to any GF items or have access to bread alone, we have others who can access a wide variety of items without any issue. Other comments received in the survey highlighted the difficulties experienced by individuals who had multiple concurrent dietary needs such as other allergies, intolerances or other diet controlled diseases such as diabetes: My daughter is very limited in her diet due to other allergies we rely on the bread and pasta we get from the NHS as she has little option and these products aren t commercially available Respondent 47 4
Cost of gluten free products Generally gluten free products were seen as expensive or very expensive to obtain (see Figure 4). Pizza Perceived expense of gluten free products Biscuits or crackers Cakes Not expensive at all / Not expensive Cereal Bread Expensive / Very expensive Pasta 0 50 100 150 Number of respondents Figure 4: Perceived expense of gluten free products Although the aim was to capture this on an individual patient basis, patients who only received items on prescription and were eligible for free prescriptions often cited that products were expensive. Responses are therefore likely to reflect a more general perception. This was reinforced in free text comments in the survey, where the costs were frequently cited as an issue of living with coeliac disease: People do not realise how expensive it is living with the coeliac disease and how much we have to spend to obtain variety. I have to make difficult decisions regularly to justify paying expensive prices in the supermarket. Respondent 27 Choice of gluten free products Across all products, the brand was perceived as important (see Figure 5). There were divided responses between positive and negative perceptions of variety between gluten free products (See Figure 6). The least variety was reported for pizza products. Where patients sourced their products from also seemed to affect the variety of products available. For bread products, more variety was reported to be available on prescription compared to those that accessed these from a supermarket or convenience store (29% stating some or lots of variety for obtaining on prescription versus 22%). However, supermarkets or convenience stores were reported to allow greater variety for all other products, apart from cakes which had a better variety for those that made them. Most respondents said that they were sometimes able to choose which gluten free products they received (n=64), with a small number stating they could always choose (n=31) and a small number also stating that the felt they had no choice at all (n=20). 5
Number of respondents Number of respondents Issues with choice of products and the variability in the quality of products available were also highlighted in comments from respondents: Although there are more brands to choose from in supermarkets, some items are truly awful, taste like cardboard. That s why being able to choose your preferred brand is extremely important. Respondent 41 140 Perceived importance of the brand of gluten free products 120 100 80 60 40 Very important Important Not important Not important at all 20 0 Pasta Bread Cereal Cakes Biscuits or crackers Pizza Figure 5: Perceived importance of brand for gluten free products 140 Percieved variety in products available 120 100 80 60 40 Lots of variety Some Variety Little Variety No variety at all 20 0 Pasta Bread Cereal Cakes Biscuits or crackers Pizza Figure 6: Perceived variety for gluten free products 6
Frequency of Consumption The most commonly consumed product in terms of frequency was bread (see Figure 7) followed by cereal and crackers. Pasta, cakes and pizza products were consumed less frequently. Figure 7: Frequency of gluten free food consumption by type Perceived health of respondents Most respondents reported that they felt that their coeliac disease was under control (89% of respondents agreeing or strongly agreeing) (See Figure 8) and had the support they needed to keep their disease under control (See Figure 9). However, there was more of a split for patients responding that they felt their symptoms were under control (58% either agreeing or strongly agreeing) (See Figure 10) and only a quarter of patients felt that they were able to avoid gluten in their diet (See Figure 11). A small number of patients (n=6) stated that they had been admitted to hospital as a result of their symptoms. Very few patients stated that they had eaten a product containing gluten on purpose more than once a month (n=13). However more respondents said that they had accidentally eaten a gluten product by mistake more than once per month (n=31). Sources of support Most patients received support from a dietitian and a high number of respondents also seemed to be members of Coeliac UK. The next most common sources of support were the GP and pharmacy (See Figure 12). 7
Number of responses I feel like I have my disease under control I have the support I need to avoid gluten in my diet Strongly disagree Disagree Agree Strongly agree Strongly disagree Disagree Agree Strongly agree Figure 8: Perceptions of disease control Figure 9: Perceptions of support available I don't suffer with symptoms of my disease I feel able to avoid gluten in my diet Strongly disagree Disagree Agree Strongly agree Strongly disagree Disagree Agree Strongly agree Figure 10: Perceptions of symptoms Figure 11: Perceived self-efficacy 90 80 70 60 50 40 30 20 10 0 Where patients seek support for a gluten free diet Figure 12: Where respondents reported receiving support from for a gluten free diet 8
Number of respondents Looking after the NHS All respondents (patients and the public) were asked their opinions around the use of NHS funding for gluten free products. Quantity of gluten free products on prescription There were strong views from respondents that some form of gluten free products should be available on the NHS but that this should be limited to patients who require a gluten free diet (See Figure 13). Respondents were split on whether the quantity available should cover all carbohydrates consumed as part of a gluten free diet, or just half. Respondent Views on the amount of gluten free products which should be available on the NHS Strongly Disagree/Disagree Strongly Agree/Agree 160 140 120 100 80 60 40 20 0 The NHS should pay for the whole family to have a gluten free diet The NHS should fund all carbohydrates for people who need a gluten free diet The NHS should fund half of the carbohydrates for people who need a gluten free diet Gluten free products should not be available on the NHS Figure 13: Respondent views on the quantity of gluten free products which should be available The cost of gluten free products in the NHS The majority of respondents stated that funding gluten free products was equally important as funding medicines, and there was a split between respondents as to whether other specialist diets should also receive funding (See Figure 14). There were assertions within the comments section highlighting that the treatment of coeliac disease was only by diet, and therefore supply of gluten free products on the NHS was needed: I feel that I should be able to get some gluten free items for my son, whilst I don t expect the NHS to provide it all, as there is not treatment other than a gluten free diet for coeliac disease there should be some provision. Respondent 79 However, some said that they had managed their condition without using NHS funded products: I do not think there is a need for gluten free food on prescription and I haven t had any for 15 years. Respondent 75 9
The NHS should fund food products for all patients who have food intolerances (not just those needing a gluten free diet) Strongly Agree/Agree Strongly Disagree/Disagree Funding gluten free products is equally as important as paying for medicines on the NHS Figure 14: Respondent views on NHS funding gluten free products 0 20 40 60 80 100 120 140 Number of respondents Coeliac UK highlighted that the current national prescribing guidelines are based on a review of carbohydrate consumption data, and take into account consumption of naturally gluten free foods such as potato and rice. Restricting gluten free products Respondents largely felt that restricting gluten free products would mean that patients would find it more difficult to follow a gluten free diet, and suffering from more symptoms associated with coeliac disease (See Figure 15). There was particular concern for people who were on lower incomes: My biggest concern regarding this consultation is that if support for those with coeliac disease is reduced or withdrawn that it could seriously affect those on a low income, especially families. While products are available from the shops, the cost of these compared to those with gluten is significantly higher. Negatively impacting the support given to [those with coeliac disease] could result in people struggling to make ends meet for a condition that they didn t ask for and, at present, has no cure. Respondent 44 The British Specialist Nutrition Association, Coeliac UK and the British Society of Gastroenterology also highlighted the potential impact on other parts of the health system of restricting access to gluten free products: It is very important that prescribing continues according to prescribing guidelines to save money for the health system by avoiding coeliac patients from becoming ill. British Specialist Nutrition Association 10
Number of Respondents Perceived impact of reducing availability of gluten free products Strongly Disagree/Disagree Strongly Agree/Agree 140 120 100 80 60 40 20 0 If gluten free products weren't available on the NHS, people would find it more difficult to follow a gluten-free diet If gluten free products weren't available on the NHS, people would be more ill Figure 15: Respondent views on the impact of reducing availability of gluten free products Responses from Coeliac UK and the British Society for Gastroenterology also highlighted research which found that access to gluten free essentials on prescription have been related to patient adherence to a gluten free diet. There was also little support for restricting gluten free products to flour to allow patients to make their own gluten free food (See Figure 16). Coeliac UK highlighted that patients who may not have the facilities or capability to make these products would not be able to engage with this approach. The NHS should only fund flour mixes, so people can make their own gluten free food 10 12 62 74 Strongly disagree Disagree Agree Strongly agree Figure 16: Views of supplying only gluten free flour to allow patients to make their own food products 11
Respondents were asked to rank which products should be available on the NHS. Weighting of these responses found that bread was the most highly valued product (See Figure 17). This was followed by flour, cereal and pasta. Biscuits or crackers and pizza were similar, with cakes being ranked the least important. If the NHS could only provide a small number of products, please tell us which ones you think are most important Pizza Pasta Flour Cereal Cakes Bread Biscuits or crackers 0.0 1.0 2.0 3.0 4.0 5.0 6.0 7.0 Weighted Score Figure 17: Weighted scores for which products were perceived to be more important for supply on the NHS Free text comments in the survey revealed strong support for staple food items, though it is clear that there isn t always agreement about what these are: Staple gluten free foods available on prescription are essential to support balanced diets for patients with coeliac disease. Respondent 38 Supply through pharmacies The British Society of Gastroenterology highlighted the potential use of pharmacy led services to supply gluten free products. Coeliac UK also highlighted this as potential option, citing the scheme recently developed and launched in Scotland 1 where gluten free foods have been made available directly through community pharmacy. 1. http://www.communitypharmacyscotland.org.uk/nhs-care-services/services/gluten-free-foods/ 12
Conclusion There is generally strong support amongst patients, the public and healthcare professionals in Sunderland for the continued availability of gluten free products on prescription. Support seems to be aligned to current recommendations of funding a proportion of carbohydrates for those requiring a gluten free diet. This is also reflective of a large proportion of patients already supplementing their diets with products which are being sourced at patients own expense and the use of naturally gluten free carbohydrates. It seems at present there is variation in what patients are currently able to access on prescription. The quality of products both off and on prescription seems to be variable, and therefore choice and brand preferences have been expressed as being important in adhering to a gluten free diet. Differences amongst individuals in their eating habits makes limiting choice to a specific number of products difficult, especially when taking into account multiple dietary needs. Consideration also needs to be given to the particular dietary needs of children. Concern has also been raised about the impact of any restrictions to those on lower incomes. The potential healthcare costs that may be incurred elsewhere in the healthcare system if patients become ill as a result of being unable to obtain gluten free products on the NHS has also been highlighted. A pharmacy based scheme such as that developed in Scotland could be an option to control costs and allow patients a choice of products which suit their needs. It could also provide more support to patients. Author: Gemma Donovan, Medicines Optimisation Pharmacist Date: November 2016 13