Feedback Report Derbyshire CCGs Consultation on the Prescribing of Gluten-Free Foods

Transcription

1 Feedback Report Derbyshire CCGs Consultation on the Prescribing of Gluten-Free Foods Author: Sam Robinson (Patient Engagement & Experience Team) NDCCG 11/10/17v.1.9 (NDCCG Patient Engagement & Experience Team) Page 1 October 2017

2 Contents North Derbyshire Clinical Commissioning Group 1 Introduction 3 2 Background Consultation Process 4 4 Consultation documents 4 5 Public Events 5 6 Prescribing in other CCGs 5 7 Results/Feedback 5-22 Feedback responses Social media Media Report Summary of letter from Coeliac UK Summary of survey feedback Feedback from prescribing in other CCGs feedback Telephone call feedback Letter feedback Public event feedback Out of area feedback Summary of additional comments 8 Next Steps 22 9 Acknowledgements 22 Appendices A Equalities data B Letter received from Coeliac UK C Equalities Impact Assessment 32 11/10/17v.1.9 (NDCCG Patient Engagement & Experience Team) Page 2 October 2017

3 1. Introduction The purpose of this report is to provide feedback on the formal consultation which ran from 27 th February 2017 to Tuesday 15 th August 2017 on the future of gluten-free foods prescribing across the four Derbyshire CCGs (North Derbyshire, (292,000 population) Erewash, (96,000 population) Hardwick (103,000 population) and Southern Derbyshire (548,000 population)). The consultation was managed by North Derbyshire CCG. The CCG s wanted to ensure prior to making a decision that the views and needs of local people and stakeholders were taken into account. Therefore we asked for views on the following three options. Option 1 Option 2 Option 3 Stop providing gluten-free foods on prescription altogether Change the gluten-free allowance to eight units per month for everyone eligible for gluten-free food on prescription and have much more limited products available on prescription (e.g. only loaves of bread, pasta and flour allowed on NHS Prescriptions) other products (e.g. breakfast cereals, pizza bases, bread rolls, crackers) would no longer be allowed. Continue to follow the Coeliac Society s recommendations for number of units (10 to 18 units depending on the age and sex of the patients) but have much more limited products available (e.g. only loaves of bread, pasta and flour allowed on NHS prescriptions) other products (e.g. breakfast cereals, pizza bases, bread rolls, crackers) would no longer be allowed. However, the total gluten-free allowance would remain the same as it is currently. As part of the pre-engagement process, the North Derbyshire CCG engaged with Derbyshire Health Overview and Scrutiny Committee and Southern Derbyshire CCG shared the details of the engagement with Derby City Health Overview and Scrutiny Committee. An equality impact assessment was completed prior to work commencing on planning the consultation. (See appendix D) 2. Background Coeliac disease is a common digestive condition, triggered by the protein which is found in wheat, barley and rye. Symptoms range from being mild to severe and can include abdominal pain, diarrhoea, nausea, weight loss, headaches and osteoporosis. The disease affects approximately 1 in 100 people in the UK where women are two or three times more likely to develop coeliac disease than men. It can be diagnosed at any age. Symptoms are controlled by excluding foods that contain gluten from the diet. There are no medicines available to treat the condition and it cannot be cured. 11/10/17v.1.9 (NDCCG Patient Engagement & Experience Team) Page 3 October 2017

4 For over 40 years the NHS has prescribed gluten-free foods, like bread, flour, cereal and pasta to patients who have been diagnosed with coeliac disease. We began prescribing gluten-free foods when products were expensive and difficult to source. The four Derbyshire Clinical Commissioning Groups agreed that they needed to ensure that money was spent for the benefits of the whole population. The cost of providing patients with gluten-free prescriptions across Derbyshire is 745,000. The decision to review the gluten-free foods policy stems from the principle that most glutenfree foods are now widely available in supermarkets and sold at prices much lower than those paid by the NHS, although there is a cost difference between gluten-free and gluten containing foods. 3. Consultation Process The consultation commenced on 27 th February 2017 and was due to close on 27 th May 2017 (after a period of 13 weeks). However, due to purdah guidelines around local and the general elections, the closing date was extended to 15 th August The CCG s planned to undertaken drop-in sessions but following the lifting of purdah and after consideration of the response rates and feedback received it was felt that the relevant cohort of patients had been targeted and had already submitted their views. The CCG s with the assistance of Arden and GEM Commissioning Support Unit, Primary Care Analysts (A & GEM CSU) estimated the number of patients across Derbyshire who were diagnosed with coeliac disease and dermatitis herpetiformis. The Medicines Management staff who work closely with each practice, then ensured that every diagnosed patient was sent a copy of the consultation questionnaire. In addition each practice gave out the questionnaire to a random cohort of non-diagnosed patients. 4. Consultation Documents Paper document questionnaire Online survey Telephone number to provide feedback and for enquiries address for queries and comments Press release CCG websites and intranets Posters at all GP practice and pharmacies across Derbyshire Executive blogs The consultation documents were also shared with Coeliac UK, MP s, dieticians and local hospitals and Councillors. 11/10/17v.1.9 (NDCCG Patient Engagement & Experience Team) Page 4 October 2017

5 During the engagement period, all Derbyshire CCGs used social media to advertise the consultation, particularly facebook and twitter. 5. Public Events Sheffield Coeliac Group Saturday 18 th March 2017 was their Annual General Meeting and this was the nearest group to Derbyshire. Head of Medicines Management from North Derbyshire CCG attended this event. 6. Prescribing in other CCGs The Lead Medicines Management Pharmacist at the beginning of our consultation contacted Harrogate and Rural District and York CCG as they had been cited in the letter received from Coeliac UK as examples of good practice with regards to prescribing gluten-free foods. Details were also referenced for NHS Rotherham CCG within the additional feedback received from patients. NHS Rotherham CCG have been contacted and details can be seen in Feedback from prescribing in other CCGs. 7. Results Feedback responses 18 s 31 telephone calls (12 requested a consultation questionnaires) 19 Letters (one letter received from Coeliac UK 7 th March 2017) 46 additional comments received with completed questionnaires Social Media The consultation was shared on two social media sites, Facebook and Twitter. Below is the data for the posts shared on Facebook via North Derbyshire CCG 27 th February th March th May people reached 34 post clicks 18 likes, comments and shares No negative feedback 280 people reached 14 post clicks 6 likes, comments and shares No negative feedback 150 people reached 5 likes, comments and shares 10 post clicks No negative feedback 11/10/17v.1.9 (NDCCG Patient Engagement & Experience Team) Page 5 October 2017

6 Below is the data for the tweets on Twitter via North Derbyshire CCG Impressions (amount of times that people saw this tweet) Total engagements (amount of times that people interacted with this tweet) Detail expands (amount of times people viewed the details about this tweet) Link clicks (clicks on the URL) 27 th February 2017 Impressions Total Engagements -8 Detail Expands - 4 Likes - 1 Link Clicks th March 2017 Impressions rd March 2017 Impressions Total Engagements - 7 Link clicks - 6 Detail expands - 1 Below is the data for the tweets on Twitter via Southern Derbyshire CCG (nothing was added to Facebook) 10 th July 2017 Impressions Retweet - 1 Likes 1 1 st August 2017 Impressions Link Clicks - 2 Media report To raise awareness of the consultation and gather as much feedback as possible, we embarked on a modest media campaign to encourage people to have their say on proposed changes to the prescription of gluten free foods. Dr Ben Milton, Chair and Clinical Lead of North Derbyshire CCG and Dr Andrew Mott, GP and Derbyshire County Health and Wellbeing Board GP Representative on the Governing Body of Southern Derbyshire CCG, were the nominated spokespeople. The media release announcing the consultation was issued a few days ahead of the consultation start date. Burton Mail was the first media outlet to feature the consultation under the headline Coeliac patients unhappy over food proposals. The article was detailed and explained the rationale for the consultation. They featured the consultation again online the following week with a less balanced article. The headline read Coeliac UK condemns South Derbyshire gluten free prescription cut. The Derby Telegraph featured the consultation in their 1 March 2017 edition under the headline Coeliacs could lose their prescription gluten-free food. The article gives the perspective of Courtney Walker, a 21- year-old coeliac from Etwall, and offered the rationale for the consultation. 11/10/17v.1.9 (NDCCG Patient Engagement & Experience Team) Page 6 October 2017

7 On 2 March 2017 BBC Radio Derby dedicated a large part of their breakfast show to the consultation. The show discussed the consultation in detail and gave an insight into the many views people have on whether gluten free foods should be available on NHS prescription or not. The coverage was balanced in that they spoke to people who were for and against changes to the availability of gluten free foods on prescription. The overall media reach of the consultation was 102,244. Date Media outlet Reach 1 March 2017 Burton Mail (Web) 31,535 1 March 2017 Derby Telegraph 18,903 2 March 2017 Burton Mail (Print) 7,806 7 March 2017 BBC Radio Derby 22,000 Summary of letter from Coeliac UK Coeliac UK provided all Derbyshire CCG s with a formal response to the consultation. Concerns were raised around health inequalities and highlighted the significance of a glutenfree diet to patients with coeliac disease. They stated that the proposal to stop providing gluten-free foods on prescription would disproportionately impact on the most vulnerable such as the elderly and those with limited transport options and those people on fixed or low incomes. They shared details of a pre-paid card as an alternative to GP10 prescribing and prescribing for individual needs as cited by Harrogate and Rural District CCG and these are further discussed in Feedback from prescribing in other CCGs later in the report. Coeliac UK said that they understood the need to control costs within the NHS but they were concerned that the proposal would impact on long term health outcomes and therefore provides a false economy. Also they recommended that Derbyshire CCGs should consider the impact of the proposals on patients with coeliac disease who have purchased prescription pre-payment certificates (PPCs) They were also concerned from our consultation of the nutritional differences which require to be taken into account particularly the important source of energy in bread as it provides more than 10% of our intake of protein, B vitamins and iron, and one fifth of our dietary fibre and calcium. Finally, Coeliac UK felt that the proposal did not provide reassurances that the impact on health if the proposal to remove gluten free food on prescription was approved would be monitored. Coeliac UK shared on their Facebook details of the Derbyshire wide consultation. For further details see Appendix B. 11/10/17v.1.9 (NDCCG Patient Engagement & Experience Team) Page 7 October 2017

8 Summary of survey feedback A total number of 2,519 responses were received, 1,270 received in paper format and 1,249 completed online via survey monkey. From this total 2.68% (66) were received from patients who were registered with GP practices outside of the four CCG areas. To ensure equity at each GP Practice a random sample of undiagnosed patients equal to the number of diagnosed patients were asked to complete the questionnaire as well. (Q1) Which of the following statements apply to you? This question asked for patients to tick the statements that applied to their illness. 2,499 answered and 21 people skipped the question. Of the people who completed the survey; 67.35% (1,683) people were diagnosed with coeliac disease and; 3.28% (82) diagnosed with dermatitis herpetiformis and; 18.61% (465) were undiagnosed (Q2) Which GP Practice are you registered with? 2,466 patients answered and 54 chose to skip this question. The table below shows the number and % of forms returned for each CCG. 2.72% (66) were returned from out of area GP Practices. CCG % CCG return No. CCG return Erewash CCG 6.9% 169 Hardwick CCG 8.8% 217 North Derbyshire CCG 27% 669 Southern Derbyshire CCG 54.6% 1345 Out of Area 2.7% 66 Total (Q3) Where do you live? The information from this question would not provide any valuable data. 11/10/17v.1.9 (NDCCG Patient Engagement & Experience Team) Page 8 October 2017

9 (Q4) Do you (or the person you care for / represent) receive gluten-free foods on prescription? 70.00% 60.00% Do you (or the person you care for / represent) receive gluten-free foods on prescription? 59.73% 50.00% 40.00% 30.00% 20.00% 40.27% Yes No 10.00% 0.00% Yes No From the responses received to this question, of which 2,447 patients answered and 73 chose to skip. The total number of patients who receive gluten-free foods on prescription is 59.7% (1461) and 40.3% (986) who do not receive gluten-free foods on prescription. Further cross tabulation has been completed with data from question 1 and with data from question 4. By cross tabulating the data, this identifies the number of patients who are diagnosed with coeliac disease or dermatitis herpetiformis and receive prescriptions for their food. The data from question 1 only includes the patients who have indicated that they are:. diagnosed with coeliac disease (1293) or.diagnosed with dermatitis herpetiformis (60). The data not used for the table below are: I have not been diagnosed with CD / DH I am the parent / guardian of a child with CD/DH I am a carer of an adult with CD/DH I am responding on behalf of someone who has CD/DH I am a clinician, for example a GP / Nurse or Consultant I am responding on behalf of a group or organisation 11/10/17v.1.9 (NDCCG Patient Engagement & Experience Team) Page 9 October 2017

10 Do you receive gluten-free foods on prescription? Yes No TOTAL I am diagnosed with coeliac disease 78.8% (n1293) 21.2% (n347) 100% (n1640) I am diagnosed with dermatitis herpetiformis 75% (n60) 25% (n20) 100% (n80) (Q5) If you or the person you care for / represent does not receive gluten-free foods on prescription, could you tell us why not? The question asks the patients to tick a selection of sentences that apply and also to include any other information as to why they did not receive gluten-free foods on prescription. 1,408 patients answered 1,112 chose to skip the question, 261 additional responses were received under the option of other. 11/10/17v.1.9 (NDCCG Patient Engagement & Experience Team) Page 10 October 2017

11 18.54% 21.5% 10.23% 42.97% 9.16% 8.74% 13.49% 13.07% 9.87% From the 261 other additional responses these have been themed and the data highlights that 26.81% (70) of the patients state that cost is a reason why they do not receive glutenfree foods on prescription. Cost The cost is now cheaper than the prescription charge I think the NHS has enough to pay for without paying for food Prescribing gluten-free is a draw on NHS resources 14.55% (38) of patients state that they had never been offered food on prescription and were unaware of the process. I was not aware originally when diagnosed that I could have items on prescription until later on 11/10/17v.1.9 (NDCCG Patient Engagement & Experience Team) Page 11 October 2017

12 I don t really know a lot about it. It s not something that has been discussed with me properly when I ve seen my dietician. Never been offered, my doctor has never talked to me about my results A proportion of patients 11.49% (30) also quote other reasons as to why they did not receive gluten-free products on prescription, these were varied and examples can be seen below. I order my bread from a chemist on an order form. The doctor just confirms I have coeliac disease. I have not found a bread I really like from the supermarket I feel it s difficult to get the GP to prescribe foods he s not prescribing me what I need but what he is allowed to and I feel guilty so I live on normal food and hope it s not harming me I have recently begun buying more gluten-free foods along with our regular supermarket shopping. Though I do still like to have prescription pasta. With 10.23% (144) confirming that the food available on prescription is limited and 9.16% (129) that receiving gluten-free food this way is inconvenient. (Q6) If you or the person you care for / represent receive gluten-free food on prescription, please tell us why? Answered 2,213, skipped 306 Answer Choices Responses I have been formally diagnosed by the NHS with coeliac disease/dermatitis herpetiformis and believe the NHS 59.38% 1,314 should provide gluten-free food for me because of my condition I am eligible for free prescriptions 40.58% 898 I am on benefits that enable me to receive free prescriptions 3.84% 85 The food available on the High Street / in supermarkets is 36.92% 817 too expensive The choice is limited where I live 10.98% 243 It helps ensure that I have regular GP check-ups 11.88% 695 Patients were allowed to tick more than one statement. The response shows the highest proportion are patients who have been diagnosed at 59.38% (1,314), with 40.58% (898) eligible for free prescriptions. 11/10/17v.1.9 (NDCCG Patient Engagement & Experience Team) Page 12 October 2017

13 (Q7) Which gluten-free products do you / person you care for or represent receive on prescription? 2,235 patients answered with 285 choosing to skip the question % 50.00% 40.00% 30.00% 20.00% 10.00% 0.00% Which gluten-free products do you / person you care for or represent receive on prescription? (Tick as many boxes as apply to you) 40.33% 57.12% 36.39% 22.20% 19.47% 22.61% 5.37% 32.36% Flour Bread Pasta Crispbreads or crackers Pizza bases Breakfast cereals Biscuits / Cakes Not applicable From the table above it shows, the three highest gluten-free products requested on prescription are bread at 57.12% (1,276), flour 40.33% (901) and pasta 36.39% (813) Data from question 7 (which gluten-free products do you receive) has been cross tabulated with question 14 (age of the patient) to provide data of who is prescribed gluten-free products against age. 11/10/17v.1.9 (NDCCG Patient Engagement & Experience Team) Page 13 October 2017

14 Flour Bread Pasta Crispbreads or crackers Pizza Breakfast cereals Biscuits Not applicable North Derbyshire Clinical Commissioning Group Under and over Prefer not to say Grey shading denotes the highest number of patients in the particular age range that order each product. 11/10/17v.1.9 (NDCCG Patient Engagement & Experience Team) Page 14 October 2017

15 (Q8) On average, how many units of gluten-free food do you / person you care for or represent receive on prescription each month? Answered 1,506, skipped did not receive a prescription. 1.37% 17.89% 16.52% 13.14% 19.81% 0-4 units 5-8 units 9-12 units units more than 18 units On average per month, patients between 5-8 units of gluten-free foods on prescription. (Q9) We are considering amending our prescribing policy for gluten-free foods to either limit or stop completely the prescribing of gluten-free foods Options % No. response response Option 1 Stop providing gluten-free foods on prescription altogether 23.82% 561 Option 2 Change the gluten-free allowance to eight units per month 26.50% 624 for everyone eligible for gluten-free food on prescription and have much more limited products available on prescription (e.g. only loaves of bread, pasta and flour allowed on NHS Prescriptions) other products (e.g. breakfast cereals, pizza bases, bread rolls, crackers) would no longer be allowed Option 3 Continue to follow the Coeliac Society s recommendations 49.68% 1,170 for number of units (10 to 18 units depending on the age and sex of the patients) but have much more limited products available (e.g. only loaves of bread, pasta and flour allowed on NHS prescriptions) other products (e.g. breakfast cereals, pizza bases, bread rolls, crackers) would no longer be allowed. However, the total gluten-free allowance would remain the same as it is currently Total 100% /10/17v.1.9 (NDCCG Patient Engagement & Experience Team) Page 15 October 2017

16 Data from question 1 has also further been cross tabulated with data from question 9 to show the analysis of diagnosed patients who have responded to the options. Question 1 identifies the number of patients who are diagnosed with coeliac disease (CD) or dermatitis herpetiformis (DH). The data from question 1 only includes the patients who have indicated that they are diagnosed with CD (1293) and diagnosed with DH (60) The data not used for the table below from the responses to question 1 are: I have not been diagnosed with CD / DH I am the parent / guardian of a child with CD/DH I am a carer of an adult with CD/DH I am responding on behalf of someone who has CD/DH I am a clinician, for example a GP / Nurse or Consultant I am responding on behalf of a group or organisation Options % response No. response Option 1 Stop providing gluten-free foods on prescription 10.3% 169 altogether Option 2 Change the gluten-free allowance to eight units per 29.7% 489 month for everyone eligible for gluten-free food on prescription and have much more limited products available on prescription (e.g. only loaves of bread, pasta and flour allowed on NHS Prescriptions) other products (e.g. breakfast cereals, pizza bases, bread rolls, crackers) would no longer be allowed. Option 3 Continue to follow the Coeliac Society s 60% 987 recommendations for number of units (10 to 18 units depending on the age and sex of the patients) but have much more limited products available (e.g. only loaves of bread, pasta and flour allowed on NHS prescriptions) other products (e.g. breakfast cereals, pizza bases, bread rolls, crackers) would no longer be allowed. However, the total gluten-free allowance would remain the same as it is currently. TOTAL 100% /10/17v.1.9 (NDCCG Patient Engagement & Experience Team) Page 16 October 2017

17 Data from question 1 has also further been cross tabulated with data from question 9 to show the analysis of undiagnosed patients who have responded to the options. Question 1 identifies the number of patients who have not been diagnosed with coeliac disease (CD) or dermatitis herpetiformis (DH). The data from question 1 only includes the patients who have indicated that they are have not been diagnosed with CD /DH (465) The data not used for the table below from the responses to question 1 are: I am diagnosed with coeliac disease I am diagnosed with dermatitis herpetiformis I am the parent / guardian of a child with CD/DH I am a carer of an adult with CD/DH I am responding on behalf of someone who has CD/DH I am a clinician, for example a GP / Nurse or Consultant I am responding on behalf of a group or organisation Options % response No. response Option 1 Stop providing gluten-free foods on prescription 55.9% 260 altogether Option 2 Change the gluten-free allowance to eight units per 14.62% 68 month for everyone eligible for gluten-free food on prescription and have much more limited products available on prescription (e.g. only loaves of bread, pasta and flour allowed on NHS Prescriptions) other products (e.g. breakfast cereals, pizza bases, bread rolls, crackers) would no longer be allowed. Option 3 Continue to follow the Coeliac Society s 18.27% 85 recommendations for number of units (10 to 18 units depending on the age and sex of the patients) but have much more limited products available (e.g. only loaves of bread, pasta and flour allowed on NHS prescriptions) other products (e.g. breakfast cereals, pizza bases, bread rolls, crackers) would no longer be allowed. However, the total gluten-free allowance would remain the same as it is currently. Did not answer 11.18% 52 TOTAL 100% /10/17v.1.9 (NDCCG Patient Engagement & Experience Team) Page 17 October 2017

18 (Q10) Do you think there is another option we should consider? The main themes contained in the responses are: Cost of gluten-free products o Why is the cost to the NHS of items significantly higher than supermarket prices? This situation should not be used as a reason for reducing the service to patients o Maybe over 65 free prescriptions and low income families should be able to get prescriptions as these foods are expensive and people really do need these items as without these items they suffer o Maybe some kind of means testing e.g. all people on benefits receiving a bigger allowance of gluten-free foods Prepaid credit cards/voucher systems o Supermarket vouchers as the food is expensive on the high street practically double o Would there be any way other than prescription or giving coeliac s vouchers for supermarkets to help with the extra cost o Vouchers/Coupons that could be used against supermarket transactions for gluten-free food rather than prescriptions which are limited to certain brands dependant on what is available in the area No change to the current provision o Leave the system as it is, it works well for my family o Continue to follow the Coeliac Society s recommendations for number of units and also include breakfast cereals in the products available as they are a valuable source of vitamins and minerals required for a healthy diet especially in those with coeliac disease o Leave the system as it is and use the purchasing power of the NHS to get items cheaper from suppliers. Suppliers are charging the NHS too much for supplies because they know they can. The NHS ought to be able to get better deals for the large amount it purchases. Additional themes are: Reduce units of gluten-free foods Ensure breakfast cereals are still included under option 2 and option 3 Offer more choice of gluten-free foods Renegotiate with providers and manufacturers better prices Education, recipes, promote healthy eating Stop prescribing gluten-free foods Let the system be managed by pharmacists 11/10/17v.1.9 (NDCCG Patient Engagement & Experience Team) Page 18 October 2017

19 Target drug abusers, smokers, alcoholics and obese people Ensure fairness for all coeliac patients (Q11) Below are a number of statements, please indicate whether you agree or disagree with each statement I understand the reason my CCG is reviewing whether to not to continue offering glutenfree food on prescription It is appropriate that the NHS provides gluten-free food on prescription for those who need it. People who need gluten-free food should buy it themselves It is difficult to find gluten-free food in my locality Strongly Agree 30.04% % 1, % % 174 Agree Not Sure Disagree Strongly Disagree 39.50% 10.21% 9.12% 11.13% % 7.13% 10.23% 10.76% % 12.92% 29.32% 30.39% % 10.98% 39.84% 24.61% Total 2,390 2,454 2, Data from question 1 (diagnosed patients) has been cross tabulated with data from question 11 (a number of statements) to show the analysis of responses for only diagnosed patients. Question 1 identifies the number of patients who are diagnosed with coeliac disease (CD) or dermatitis herpetiformis (DH). The data from question 1 only includes the patients who have indicated that they are diagnosed with CD (1293) and diagnosed with DH (60) The data not used for the table below from the responses are: I have not been diagnosed with CD / DH I am the parent / guardian of a child with CD/DH I am a carer of an adult with CD/DH I am responding on behalf of someone who has CD/DH I am a clinician, for example a GP / Nurse or Consultant I am responding on behalf of a group or organisation Coeliac I understand the reason my CCG is reviewing whether to not to continue offering glutenfree food on prescription Strongly Agree 14.46% 187 Agree Not Sure Disagree Strongly Disagree 44.77% 10.44% 12.45% 16.78% Total 1,279 11/10/17v.1.9 (NDCCG Patient Engagement & Experience Team) Page 19 October 2017

20 It is appropriate that the NHS provides gluten-free food on prescription for those who need it. People who need gluten-free food should buy it themselves It is difficult to find gluten-free food in my locality 48.66% % % % % % % % % % % % 552 1% % % 159 1,330 1,247 1,241 The results of the cross tabulation table indicate the same outcomes as the data with all patients whether they are diagnosed or undiagnosed. Feedback from prescribing in other CCGs During the period of the consultation it was commented by Coeliac UK that two other Clinical Commissioning Groups already had excellent schemes in place. York CCG has a debit card scheme that they are currently piloting. Patients are given a card that they use at any shop where you can use card payments, these are loaded with a certain amount of money each month and can be used against the price of gluten-free foods only. This obviously has the advantage that patients can access a much wider choice of gluten-free foods and the cards can be programmed so they only work against specific foods (e.g. they may work for pasta but not for cake). The amount of money put on the card can be altered if required so, in theory if the scheme is costing too much you could reduce the money going on the card. It also takes the onus away from GPs so they no longer have to worry about prescribing. Early data highlights that this scheme is currently costing more than anticipated. The scheme may work better with a more limited formulary or by reducing the number of units each month. Once the money is spent on the card the patient cannot buy more gluten-free foods until the next month. Harrogate and Rural District CCG stopped all gluten-free food under their new policy but various low income groups could then ask the GP if they could have it reinstated if they felt it necessary. If it was reinstated then they could only get bread and flour no other products will be available. From viewing the data for this CCG, it appears that not many have asked for the prescription to be reinstated as the area is mainly affluent patients. NHS Rotherham CCG operates their scheme as follows: 11/10/17v.1.9 (NDCCG Patient Engagement & Experience Team) Page 20 October 2017

21 All patients with a definite diagnosis of coeliac disease are managed by the dieticians and patients are provided with basic foodstuffs, flour, bread, pasta and pizza bases in quantities according to coeliac UK guidelines. The dietician will issue a voucher that local pharmacies can dispense against and then the endorsed voucher is returned to the dieticians and they reimburse the pharmacy at drug tariff price plus the dispensing fee. All pharmacies within Rotherham CCG have been instructed on how to obtain products without incurring out of pocket expenses and therefore do not incur these costs. feedback Many of the responses were for patients to add additional comments about the questionnaire and to ensure we heard the message that being diagnosed with coeliac disease was not a fad diet and that gluten-free food was an essential part of their diet to maintain their health. Telephone call feedback 31 telephone calls were received at North Derbyshire CCG, which was the main contact for the consultation. Twelve of these were patients who had already been contacted by Coeliac UK and made aware of the consultation taking place across the Derbyshire CCGs. A cohort of patients wanted to discuss the consultation further and these patients were called by a member of the Medicines Management Team to talk in depth about the options. Letter feedback 19 letters in total were received. Six of these were from MP s across the Derbyshire area and one letter from Coeliac UK (Appendix B) and one was from a member of the public who supported Option 3. These letters were themed and the data highlights the same concerns as previously mentioned in Summary of additional comments again showing a correlation with the data received from the questionnaires via survey monkey. Financial impact for patients when purchasing gluten-free foods i.e. a single mother recently diagnosed with coeliac disease said that she would have to rely on her mother to buy her gluten-free products should her prescriptions be taken away as she would not be able to afford to buy these herself as well as feeding her child. Reducing the units and ensuring essential ingredients are provided By providing flour and bread on prescription is the only way for patients to follow medical advice From a socio-economic perspective those that cannot afford to buy their own glutenfree bread or pasta will basically be priced out of eating these staple foods. 11/10/17v.1.9 (NDCCG Patient Engagement & Experience Team) Page 21 October 2017

22 The availability of gluten-free food, and information regarding gluten-free, has undoubtedly improved over the last 5 years. However availability and information is not the same as access. Public event feedback A member of the Medicines Management Team attended the Sheffield Coeliac UK s local group meeting and held an information stall prior to their Annual General Meeting to raise awareness of the Derbyshire consultation on the supply of gluten free foods on prescription. They encouraged patients and family members; in particular those registered with Derbyshire General Practices; to respond to the consultation. They also made patients and family members aware of the current prescribing recommendations and the options included in the consultation. Out of area feedback From the 66 completed questionnaires received back from out of area, below is the breakdown of the options which were chosen. (3 people chose to skip this question). Option 1 14 Option 2 7 Option 3 42 Comments made to question10 Do you think there is another option we should consider? from the out of area feedback forms falls into three main themes: Provide vouchers to use in supermarkets Ensure gluten-free foods are the same prices as normal foods in the supermarkets Keep the system the same as recommended by Coeliac UK Feedback of additional comments 46 additional comments were received with completed questionnaires. These have been themed in categories and there is a correlation from the data received via survey monkey and the extra comments. Theme 1 is the financial impact for patients when purchasing gluten-free foods from local supermarkets placing an excessive burden on the coeliac patients as well as not being able to afford the extra financial pressure. Theme 2 is patients putting forward their view of the fact that being a coeliac patient is not a lifestyle choice and the patients have no choice other than adhering to a gluten-free diet. 11/10/17v.1.9 (NDCCG Patient Engagement & Experience Team) Page 22 October 2017

23 Theme 3 is in line with Option 2 of the questionnaire which suggests changing the glutenfree allowance to eight units per month and ensuring that patients can receive the essential ingredients, not necessarily what the four Derbyshire CCGs have recommended in the document. Additional themes noted were: Can the NHS negotiate prices with manufacturers By providing flours and breads on prescription is the only way for patients to follow medical advice Target regular drug users, smokers and obese patients Next Steps The consultation report will be made available on all the Derbyshire CCG websites. This report will form part of the consideration of the CCGs when making a final decision. Acknowledgements Thank you to everyone who took part in this consultation. 11/10/17v.1.9 (NDCCG Patient Engagement & Experience Team) Page 23 October 2017

24 The answers to the next group of questions will be used to understand who provided feedback during this consultation period. (Q13) Are you Male or Female? Answered 2,481, skipped 38 Appendix A 80.00% Are you Male or Female? 70.00% 60.00% 50.00% 40.00% 30.00% Male Female Prefer to not to say 20.00% 10.00% 0.00% Male Female Prefer to not to say 11/10/17v.1.9 (NDCCG Patient Engagement & Experience Team) Page 24 October 2017

25 (Q14) What is your age? Answered 2,504, skipped 15 North Derbyshire Clinical Commissioning Group What is your age? 25.00% 20.00% Under % % % and over 0.00% Under and over Prefer not to say Prefer not to say (Q15) If you describe yourself as having a disability, which type of disability do you have? Answered 2,329, skipped % 70.00% 60.00% 50.00% 40.00% 30.00% 20.00% 10.00% 0.00% If you describe yourself as having a disability, which type of disability do you have? (You may tick more than one box) No disability Sensory Impairment Physical disability Learning disability Mental ill health Prefer not to say Another form of disability (please specify) 11/10/17v.1.9 (NDCCG Patient Engagement & Experience Team) Page 25 October 2017

26 (Q16) How would you describe your ethnic origin to be 2,416 answered, 103 skipped 93.09% (2,249) were White English, Scottish, Welsh, Northern Irish, British 2.69% (65) preferred not to say 1.49% (36) Any other white background (Q17) Is your gender identity different to the sex you were assumed at birth? 2,408 answered, 111 skipped % 90.00% 80.00% 70.00% 60.00% 50.00% 40.00% 30.00% 20.00% 10.00% 0.00% Is your gender identity different to the sex you were assumed at birth? Yes No Prefer not to say Yes No Prefer not to say 11/10/17v.1.9 (NDCCG Patient Engagement & Experience Team) Page 26 October 2017

27 (Q19) Are you pregnant or are you caring for a child under 24 months? 2,404 answered, 115 skipped % Are you pregnant or are you caring for a child under 24 months? % 80.00% 60.00% 40.00% Yes No 20.00% 0.00% Yes No (Q20) What is your employment status? 2,479 answered, 40 skipped % 45.00% 40.00% 35.00% 30.00% 25.00% 20.00% 15.00% 10.00% 5.00% 0.00% What is your employment status? In Work Unemployed Retired Student Full-time parent Carer Other (please specify) The majority of patients are currently employed at 44.33% (1,099) with the next figure being retired at 38.56% (956). 11/10/17v.1.9 (NDCCG Patient Engagement & Experience Team) Page 27 October 2017

28 Note: this is an official letter from Coeliac UK, the system will not let the headers be shown. North Derbyshire Clinical Commissioning Group Appendix B Dear Steve Allinson, Re: Consultation on gluten free food on prescription by Derbyshire clinical commissioning groups Further to the launch of the consultation on gluten free prescribing by NHS North Derbyshire clinical commissioning group (CCG), Southern Derbyshire CCG, Erewash CCG and Hardwick CCG, we would like to submit this letter as a formal response to the consultation. We would like to highlight our concerns regarding the proposed option to remove access to gluten free food on prescription, a service providing essential NHS support to help people manage a lifelong autoimmune disease. We are particularly concerned that if approved, this policy would result in health inequality and would have a disproportionate impact on the most vulnerable. Our concerns are shared by the British Society of Gastroenterology and are reflected in the recently published National Institute of Health and Care Excellence (NICE) quality standard for coeliac disease. We would like to know whether as part of the policy development an equality impact assessment has been completed? Pre-paid card as an alternative to FPlO prescribing The consultation document states that the CCGs have reviewed what other CCGs have done, or are considering to do about gluten free prescribing. We have been in dialogue with many CCGs and around 80% are continuing to offer access to gluten free food on prescription, although the amount and type of products available vary. As part of the review, you may have come across alternatives to FP10 prescribing. In 2016, Vale of York CCG launched a six month pilot voucher scheme to provide support to patients with coeliac disease in accessing gluten free staple foods in supermarkets and replace FP10 prescribing. The Vale of York CCG has launched a second phase of the pilot which uses a prepaid chip and pin card, supplied and managed by the company, P&MM. The card may be used in any retail outlet that accepts a VISA card and patients can view their balance, transactions and purchases using an online account. For patients who are not online, these services can be accessed over the phone. The card can be loaded at regular intervals and Vale of York CCG has chosen to load the cards quarterly. Vale of York CCG provides patients with per month (depending on age) to cover the difference in cost between gluten free and gluten containing staple foods. This scheme has the potential to make cost savings compared to FP10 prescribing as well as saving clinical time. 11/10/17v.1.9 (NDCCG Patient Engagement & Experience Team) Page 28 October 2017

29 We would be happy to provide further information or facilitate contact with Vale of York CCG and P&MM. The significance of the gluten free diet Coeliac disease is an autoimmune disease caused by a reaction to gluten, found in wheat, barley and rye. Adherence to the gluten free diet remains the complete medical treatment and having coeliac disease therefore requires significant dietary modification. Rates for adherence to the gluten free diet can vary between 42-91% [1] and access to gluten free staples on prescription can be related to adherence [2]. The consultation document states that the gluten free diet 'helps to control the symptoms'. This an underestimation as the gluten free diet is the only available medical treatment for management of coeliac disease. Non adherence to the gluten free diet is associated with an increased risk of long term complications, including osteoporosis, ulcerative jejunitis, intestinal malignancy, functional hyposplenism, vitamin D deficiency and iron deficiency [3]. These long term complications will impact upon quality of life for the patient and treating these complications will result in financial implications for the NHS. Cost and availability of gluten free staple foods In your consultation document, you state the gluten free foods are widely available. However, gluten free staple foods are not readily available to purchase in budget supermarkets and convenience stores [4, 5]. Therefore, it cannot be assumed that all people with coeliac disease will be able to purchase gluten free foods in their local shop. Access to gluten free food on prescription is especially vital for the most vulnerable such as the elderly or those with limited transport options. Research shows that gluten free staple foods are 3-4 times more expensive than gluten containing equivalents [4, 5]. An example of the increased cost of gluten free staple foods is gluten free bread, recent data shows gluten free white bread is still on average 6 times the cost of gluten containing by volume, and has not reduced since 2008 (see Annex 1). Gluten free staple foods on prescription therefore help to address the financial burden for patients and are essential for people on fixed or low incomes. While the cost to the NHS may be higher than in the supermarket, patients should not be penalised on the basis of poor procurement by the NHS. We understand that there is a need to control costs within the NHS but are concerned that this proposal will have an impact on long term health outcomes. This raises the issue of false economy, where small savings in prescription costs could lead to higher treatment costs associated with poor health outcomes and increased health complications. For example, the cost of gluten free food over a 40-year period is approximately 7,770 ( per year) [3] and the cost of treatment for a hip fracture 12,170 (increasing by 70,000 per patient if cases become more complex) [6]. 11/10/17v.1.9 (NDCCG Patient Engagement & Experience Team) Page 29 October 2017

30 The consultation document Your consultation document states that, naturally gluten free carbohydrates can be used instead of bread and pasta. The British Dietetic Association (BDA) highlights the importance of gluten free substitute staple foods for people with coeliac disease in their policy statement [7] explaining that while people with coeliac disease are encouraged to consume as many naturally gluten free foods (including rice and potatoes) as possible, it is not always realistic or convenient to base the diet upon these staples alone. Therefore, gluten free alternatives to many staple foods need to be consumed. There are also nutritional differences which must be taken into account. In the UK bread is an important source of energy, dietary fibre, vitamins and minerals. It provides more than 10% of our intake of protein, B vitamins and iron, and one fifth of our dietary fibre and calcium. Replacing the average amount of bread consumed daily in the UK (2 slices or 72g) [8] with other carbohydrates may therefore have a significant effect on the nutrient content of the diet. For example, replacing 72g gluten free 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%. Similarly, replacing gluten bread with portion of peeled, boiled potatoes containing the same amount of calories would reduce the iron content by 71% and the calcium content by 93%. Calcium recommendations for people with coeliac disease are higher (1000mg) than the general population (700mg) [9] because of the increased risk of malabsorption which may affect bone health, therefore including good sources of calcium in the diet is particularly important for people with coeliac disease. The consultation document compares coeliac disease to diabetes, high blood pressure and high cholesterol, stating that people with these conditions are not prescribed food. This statement is highly misleading as people with diabetes are recommended to follow a healthy, balanced diet and do not need to eliminate any specific foods. It is also important to note that people with these conditions are able to access prescription medications in addition to dietary advice as part of their treatment. An example of a condition where the only treatment is a life-long strict diet is the management of phenylketonuria, where the NHS does support people by prescribing specialist low protein substitute foods. This may be a more appropriate comparison. Prescribing for individual needs There have been other cases where policies have incorporated frameworks for prescribing for individual need, for example Harrogate and Rural District CCG make the following statement in their patient information leaflet: 11/10/17v.1.9 (NDCCG Patient Engagement & Experience Team) Page 30 October 2017

31 "In exceptional circumstances, patients can continue to receive gluten free products on prescription. Exceptional circumstances would include patients or children of families who are in receipt of either Income Support, Income-based Jobseeker's Allowance, Income related Employment and Support Allowance paid on its own or with contribution-based Employment and Support Allowance, Pension Credit (Guarantee Credit) paid on its own or with Pension Credit (Savings Credit), NHS Tax Credit Exemption Certificate, Universal Credit" Somerset CCG recently changed their gluten free prescribing policy to a blanket ban for all patients. Somerset CCG explicitly ruled out prescribing for specific vulnerable groups. As a result, the charity launched a legal challenge to overturn this policy to enable support of vulnerable patients by prescribing of gluten-free foods in cases of individual need, based on clinical judgement. Policies implemented by CCGs should not be allowed to impact on the responsibility of a GP to make decisions appropriate to the circumstances of the individual patient. Prescription pre-payment certificates Patients with coeliac disease are not exempt from prescription charges and so often purchase a prescription prepayment certificate (PPC) as a more cost effective solution. The proposal put forwards by the Derbyshire CCGs does not provide details of the provision that will be in place for patients with coeliac disease who have purchased PPCs if the proposal is approved. The NHS BSA have confirmed that they are unable to issue a refund for a PPC but have advised us that a CCG is in a position to provide a refund for a patient. This should therefore be an additional consideration for the CCGs. Monitoring We are concerned that the proposal does not provide reassurances that the impact on health of removal of gluten free food on prescription will be monitored. This should be a further consideration for the CCGs before approving any policy change. We look forward to hearing from you and would welcome the opportunity to discuss this further. Kind Regards Sarah Sleet, Chief Executive, Coeliac UK cc. Rakesh Marwaha, Chief Officer, Erewash CCG; Andy Gregory, Chief Officer, Hardwick CCG; Gary Thompson, Chief Officer, Southern Derbyshire CCG [1] Hall, N.J. Rubin, G. & Charnock, A. (2009). Systematic review: adherence to a gluten free diet in adult patients with coeliac disease. Alimentary Pharmacology & Therapeutics, 30, ] Hall, N. et al. (2013). Intentional and inadvertent non-adherence in adult coeliac disease. A cross-sectional survey. 11/10/17v.1.9 (NDCCG Patient Engagement & Experience Team) Page 31 October 2017