RESPONSE TO THE PUBLIC CONSULTATION ON PROPOSALS FOR HEALTH SERVICES FOR PATIENTS WITH COELIAC DISEASE IN SOMERSET

RESPONSE TO THE PUBLIC CONSULTATION ON PROPOSALS FOR HEALTH SERVICES FOR PATIENTS WITH COELIAC DISEASE IN SOMERSET 17 February 2014

RESPONSE TO THE PUBLIC CONSULTATION ON PROPOSALS FOR NEW HEALTH SERVICE FOR PATIENTS WITH COELIAC DISEASE IN SOMERSET CONTENTS Section Page SECTION 1 INTRODUCTION 1 SECTION 2 SUPPORT CURRENTLY AVAILABLE... 1 SECTION 3 SERVICE PROPOSALS... 1 SECTION 4 DISTRIBUTION OF THE CONSULTATION DOCUMENT 2 SECTION 5 RESPONSES TO THE CONSULTATION DOCUMENT... 2 SECTION 6 EQUALITY AND DIVERSITY MONITORING INFORMATION... 22 SECTION 7 CONCLUSIONS... 26 SECTION 8 SURVEY RECOMMENDATIONS FOR CONSIDERATION BY SOMERSET CCG... 28 APPENDIX 1 Consultation Document Author: Christine Lincoln Patient, Public and Carer Involvement Administrator

RESPONSE TO THE PUBLIC CONSULTATION ON PROPOSALS FOR NEW HEALTH SERVICE FOR PATIENTS WITH COELIAC DISEASE IN SOMERSET 1 INTRODUCTION 1.1 Somerset Clinical Commissioning Group (CCG) carried out a consultation between 9 September and 23 October 2013 to seek the views of patients with coeliac disease, staff and partner organisations on service improvements and additional new services that they believe should be provided to support patients in the diagnosis, treatment and on-going monitoring of coeliac disease. 1.2 The feedback will be used to inform decisions on the services to be provided across Somerset for patients with coeliac disease. 2 SUPPORT CURRENTLY AVAILABLE 2.1 It is recommended that people with coeliac disease have their condition reviewed annually by a healthcare professional. 2.2 National guidelines suggest this annual review should include: A blood test, including those to check iron, vitamin B12 and folate levels Assessment of compliance with the gluten-free diet Assessment of symptoms (such as bowel function, weight loss etc) Assessment of and advice on how to manage the increased risk of osteoporosis 2.3 In Somerset, following a diagnosis of coeliac disease, patients are initially seen by the Gastroenterologist and a dietitian based at the acute hospitals. However, the service offered for annual reviews is currently inconsistent, with some patients being reviewed by either their gastroenterologist or GP or not being reviewed at all. 2.4 Additional support for patients with coeliac disease is available via the Coeliac UK website and telephone helpline. This UK leading charity for people affected by coeliac disease also run a support group in West Somerset, however, there is not currently one for the rest of the county. 3 SERVICE PROPOSALS 3.1 The following services and support are suggested for patients: Somerset based group education session to run twice a year by dieticians specialising in coeliac disease Annual assessment with community dietitian specialising in coeliac disease Local support groups to be run by volunteers Leaflet to provide information on gluten-free foods available on prescription Information available via the internet, mobile phone apps, literature and Coeliac UK Improved training of health professionals including GPs and practice staff 1

4 DISTRIBUTION OF THE CONSULTATION DOCUMENT 4.1 The consultation document was sent to GP surgeries for them to distribute to the patients who were registered on their lists as coeliac (1261 copies). 4.2 Coeliac UK distributed 1180 copies of the consultation document to their members who live in Somerset. 4.3 Some patients would therefore have received two copies, however the exact number of duplicates is not known. A sentence was included in the covering letter explaining that there may be some duplication. 4.4 The completed consultation document was returned by 359 patients and 311 (87%) of these said they were currently members of Coeliac UK. 4.5 Somerset CCG put the consultation on their website with a link to Survey Monkey. This is an on-line survey tool which enables respondents to complete the consultation electronically and 20 people chose this method. 5 RESPONSES TO THE CONSULTATION DOCUMENT 5.1 The consultation began by asking respondents what other services they would like to support patients. Only 27 people (8%) gave a response to this question and the themes from the responses are as follows: Additional services Services for children and support for schools, early years providers, and so on Coeliac groups for children where they can meet other children and young people with coeliac disease Have some coeliac meetings in the evenings so working people are able to attend Have a named dietitian who can be contacted easily Training Better training for staff at food establishments and training for hospital chefs Education in schools about the seriousness of coeliac disease More training and awareness for GPs so they recognise the signs earlier Cookery demonstrations for basics such as pastry, cakes and bread Treatment Annual check-ups for coeliac patients for other conditions such as osteoporosis and cancer 2

Information Information on the physical impact on the body from being gluten intolerant and what happens if you eat gluten accidentally or occasionally To be able to order prescriptions directly from the pharmacy rather than having to go via the GP; this would be quicker and would not waste GPs time Question 1 5.2 Question 1 asked respondents to rank the proposed services in order of preference; first, second and third. The service proposals were as follows: Somerset based group education session, twice a year, delivered by a specialist coeliac dietitian. Topics to be covered would include: update on gluten-free foods; information on prescriptions; dietary advice; latest research and hot topics. Individual annual assessment would not be included as part of this service. Annual assessment with specialist coeliac community dietitian, which would include blood tests and assessment of symptoms via questionnaire, with tailored personalised advice via a one-to-one appointment with the dietitian, if required, and onward referral to the GP or gastroenterologist if necessary. Continue with the current model of care with some patients being reviewed by their Gastroenterologist and some patients being reviewed by their GP or a dietitian but with some patients not receiving an annual review. 5.3 In total there were 359 respondents to the coeliac service proposal questionnaire. Results from this questionnaire showed that an annual assessment was the most popular service option with 249 people (69.4%) putting this as their first choice. 5.4 A Somerset based group education session, held twice a year, was the second most popular option with 161 people (44.8%) choosing this as their second choice. 5.5 To continue with the current model of care was the third and also least most popular choice with 202 people (56.3%) selecting this as their third choice. 5.6 How each of the proposed services was ranked is shown in graph 1 on the next page. 3

Preference of Proposed Service First 69.4% 16.7% 11.4% Annual assessment Second 21.7% 44.8% 27.3% Somerset based group Third 4.7% 32.9% 56.3% left blank 4.2% 5.6% 5.0% Continue the current model 0% 20% 40% 60% 80% 100% Graph 1: Preference of proposed service 5.7 Respondents were then asked to rank the proposed developments for additional support in order of preference, the additional support options were: Local support groups to be run by volunteers Leaflet to provide up-to-date information on gluten-free foods available on prescription Provision of supporting information which is freely available via the internet, mobile phone apps, printed literature and Coeliac UK Improved training of health professionals, including GPs and practice staff 5.8 When these choices were ranked by popularity they came out in the following order: First: Second: Third: Fourth: Improved training of health professionals, including GPs and practice staff with 200 people (55.7%) choosing this as their first options Provision of supporting information which is freely available via the internet, mobile phone apps, printed literature and Coeliac UK with 105 people (29.2%) selecting this as their second option Leaflet to provide up-to-date information on gluten-free foods available on prescription with 103 (28.7%) people choosing is as a third option Local support groups to be run by volunteers with 145 people (40.4%) choosing this as the fourth and least popular option. 4

5.9 The breakdown of responses which shows preference of additional support is provided in graph 2 below. Preference of Additional Support Options First 55.7% 9.5% 21.4% 9.7% Improved training Second 20.1% 29.2% 28.1% 15.9% Supporting information Third 10.3% 27.0% 28.7% 26.2% Fourth 8.4% 26.5% 15.3% 40.4% Leaflet with up-to-date information Left blank 5.6% 7.8% 6.4% 7.8% Local support groups Graph 2: Preference of additional support options 5.10 Respondents were given the opportunity to suggest additional ideas for a service and the comments received are below: Training Awareness 0% 20% 40% 60% 80% 100% Use people with coeliac disease to help with training of GPs and health assistants Improved training for hospital staff/chefs to ensure coeliac patients receive a varied gluten-free diet with bread etc freely available There are many tips that an experienced coeliac can pass on to newly diagnosed patients to help them choose products and cooking methods Continue to raise awareness among local bakers, local food suppliers and supermarkets. Provide supermarkets with lists of gluten-free foods to ensure a regular supply is available More information should be made available for pubs and other eating places about cooking for people with coeliac disease Starter packs for new diagnosed coeliac, to include: information on the condition and other conditions that may be associated with it; prescription foods; what follow up help is available and details on Coeliac UK When coeliac patients go into hospital staff need to know about the disease and the risks of cross contamination. If gluten-free food information and training were more up-to-date patients would not have to rely on visitors taking food in or going hungry 5

Support Local support groups and buddying service Pharmacy A more efficient way to order gluten-free food on prescriptions, such as at the pharmacy rather than via the GP Put an alert system on prescriptions when there are changes being made to the food available Question 2 5.11 This question asked whether anyone else in their family have a diagnosis of coeliac disease. The responses are shown in graph 3 on the next page and show that 105 people (25%) have other family members diagnosed with coeliac disease, 236 people (66%) did not have any relations with coeliac disease and 18 people (5%) did not know if anyone else in their family were diagnosed with coeliac disease. Graph 3: Does anyone else in your family have a diagnosis of coeliac disease? Question 3 5.12 Question 3 asked people how old they were when they were diagnosed with coeliac disease. The responses to this can be seen in graph 4, which shows the number for each age group and graph 5, which shows the breakdown as percentages. Graph 4: How old were you when you were diagnosed with coeliac disease? 6

Graph 5: How old were you when you were diagnosed with coeliac disease? Question 4 5.13 Question 4 asked whether people experienced any symptoms before their diagnosis of coeliac disease. Graph 6 shows that 341 (95%) did experience symptoms before diagnosis, with 17 people (5%) not experiencing any symptoms. One person, who was diagnosed as a baby, did not know whether they would have experienced any other symptoms. Graph 6: Did you experience any symptoms before your diagnosis of coeliac disease? 5.14 Respondents were then asked to tick all the symptoms they had experienced. A list was given for them to complete with additional space for any other symptoms. The symptoms listed were as follows: Diarrhoea Faltering/slow growth Persistent nausea and/or vomiting Feeling tired all the time Recurrent stomach pains, cramping or bloating Sudden or unexpected weight loss Iron-deficiency anaemia or unexplained anaemia 7

5.15 Graph 7 shows how many of each of the symptoms listed above coeliac patients experience before they were diagnosed with coeliac disease. Graph 7: How many of the symptoms did you experience before diagnosis? 5.16 Respondents were also given the option to state any other symptoms that they experienced before diagnosis. The following shows some of the other symptoms experienced. However, for some people, for example those who stated osteoporosis, only developed the disease post-diagnosis Question 5 mouth ulcers (12 people) osteoporosis (5 people) constipation (9 people) dermatitis herpetiformis (8 people) stomach problems such as indigestion (9 people) migraines or headaches (7 people) 5.17 Question 5 asked whether respondents had previously been diagnosed with irritable bowel syndrome prior to their diagnosis of coeliac disease. Graph 8 shows that 77 people (22%) were previously diagnosed with irritable bowel syndrome and 278 (77%) were previously not. One person did not know. Graph 8: Were you previously diagnosed with irritable bowel syndrome? 8

Question 6 5.18 Question 6 asked how long it took to be diagnosed with coeliac disease from first seeing a doctor about the symptoms. The respondents were given a selection of timescales to choose from. 5.19 Graph 9 shows the responses broken down into percentages and graph 10 shows the number of respondents for each timescale. The highest proportion, 120 people (33%) were diagnosed between one and six months. Graph 9: Length of time time to diagnosis shown as a percentage Graph 10: Length of time time to diagnosis by numbers of people Question 7 5.20 Respondents were then asked how their diagnosis of coeliac disease was confirmed and the options given were: Antibody blood test Genetic blood test Endoscopy Biopsy 9

5.21 Graph 11 shows how many of the tests patients had to diagnose coeliac disease and graph 12 shows the breakdown of which tests were undertaken. Graph 11: Number of tests used to confirm coeliac disease Graph 12: Breakdown of tests used to diagnose coeliac disease 10

Question 8 5.22 This question asked whether respondents felt they were provided with enough information about their condition which was easily understandable. 5.23 Graph 13 shows that 272 people (76%) were happy with the information they received, 72 people (20%) did not think they were provided with enough information, two people did not know and 13 people (4%) did not complete this question. The two people who did not know stated that they were very young when diagnosed so were not aware of the information their parents received. Graph 13: Do you feel you were provided with sufficient information about your condition that was easily understandable? 5.24 Respondents were given the opportunity to make any additional comments about the information they were provided with. There were a lot of comments received and a selection is shown below: When I was diagnosed I was just told to cut out all gluten. It is a life changing condition and needs to be communicated more sensitively and more information provided. The first 3-6 months after diagnosis are very difficult so more support is needed Excellent information from my doctor GP surgery had no information available, so I bought a book which explained it. Was told I would get an appointment with dietitian in 6 weeks but feeling so ill could not wait that long. My wife and I read about it and I started a new diet immediately and within 4 weeks I was feeling much better I was given a very clear explanation of my condition by the gastroenterologist who examined me 15 years ago I knew very little about the condition and felt very isolated at the time as I had no family or friends with the condition Very little - I did not see a dietitian for 9 months. A friend who was coeliac and Coeliac UK was a great help. I was seen by a consultant for four years after diagnosis but was then told due to lack of funding this service would no longer be available and if I had a problem to see my GP After diagnosis and initial information I felt I was left to my own devises. I have had two annual appointments with consultants who said I was fine so there is no need to see me again 11

Very clear diagnosed. Excellent support from Coeliac UK Once diagnosed and advised by doctor I felt very alone with no direction as to how to go about changing my diet. The dietitian appointment was about six months after diagnosis and I was not told anything which I had not already researched for myself Some information was contradictory and some too basic, not directed to my level of understanding. Confused about consequences and risks etc Hardly any information and it took a long time to have blood tests etc The information received was limited but helped when first diagnosed. Coeliac UK has since provided a wealth of information Hardly any information available - a diet sheet from dietitian. Not even sure they told me about Coeliac UK. Coeliac UK forwarded me all the information I needed and still do I received adequate information regarding diet to be followed, but a little about the condition itself, the effect on my body and the implications for the future Received good advice from Gastroenterologist, Dieticians and Coeliac UK are a wonderful charity providing up to date information on latest research, new products, recipes, case studies etc Information good but had to wait for too long to get it Information is very good. Would like to change the education of some GPs as to the symptoms Much of the information was researched by myself as, at that time, the GP only had basic advice about diet and very little was available about prescriptions or food available in shops, including Health food shops. Awareness of manufacturers and suppliers was improved through correspondence but more could be done through education and easy testing for children who are not thriving normally From first diagnosed I was very pleased with the information and support I received, both from the gastroenterologist and dietician, Joining Coeliac UK has been very helpful The information was scratchy from health centre and hospital No leaflets or prescription food provided, so my wife done some research and purchased some books which helped until I had an appointment with a dietitian at least one to two years later. 12

Questions 9 and 10 5.25 Question 9 asked whether respondents joined Coeliac UK following their diagnosis and question 10 asked whether they were currently a member. Graph 14 shows the responses to both of these questions. The breakdown shows that 338 people (96%) joined Coeliac UK when they were diagnosed and 13 people (4%) did not. 5.26 The respondents then said that 311 people (87%) were current members and 45 people (13%) were not. Two people did not know whether they were a member of Coeliac UK. The information showed that 35 people were no longer members of Coeliac UK and three people had since joined. Graph 14: Membership of Coeliac UK Question 11 5.27 Question 11 asked whether respondents had seen any healthcare professionals for their coeliac disease in the last year and if so, who they had seen. Graph 15 shows that 207 people (58%) had seen at least one healthcare professional in the last year, 143 people (43%) had not seen a healthcare professional in the last year and nine people (2%) did not complete this question. Graph 16 shows how many professionals each patient saw and graph 17, on the next page, shows the breakdown of how many people saw each professional. Graph 15: Have you seen any health professional in the last year? 13

Graph 16: How many health professionals each person had seen in the last year Graph 17: Breakdown of health professionals seen in the last year 5.28 Other health professionals that had been seen over the last year included: Paediatrician (5 people) Dermatology Consultant (4 people) Neurologist (1 person) Myeloma specialist (1 person) 5.29 Some people included tests they had received such as blood tests (three people); bone density scans (one person). One person said they had had a telephone conversation with a health professional and another said he or she had had a barium drink within the last month. Question 12 5.30 Question 12 started by explaining it is recommended that people with coeliac disease have a review of their condition every year and asked how people would prefer to complete a review if they were offered one annually. Table 18, on the next page, shows the responses received, in order of preference. More than one answer was given to this question by 47 people. 14

Who would you like to complete an annual review Number Percentage Specialist coeliac dietitian based in the community 123 30% Gastroenterology consultant based in the hospital 98 24% GP 94 23% Specialist coeliac dietitian based in the hospital 79 20% Other 8 2% Did not respond to this question 4 1% Table 18 5.31 Respondents were given the opportunity to state who they would like to see for an annual review and other suggestions were: Practice nurse at GP surgery Pharmacist Paediatrician based in the community 5.32 Other suggestions were someone who understands coeliac and having an annual blood test and to be given the name of a dietitian to contact if needed. Question 13 5.33 Question 13 asked what form of annual review respondents would prefer. Although they were asked to tick one option some people chose more than one. Table 19 shows the breakdown of the answers given, in order of preference. What form of annual review would you prefer Number Percentage Outpatient appointment in a community hospital 132 35% Outpatient appointment in an acute hospital 99 26% Other option 43 11% Completion of a simple questionnaire via post 39 10% Completion of a simple questionnaire via internet 28 8% Telephone review 22 6% Did not respond to this question 13 4% Table 19 5.34 Respondents were then given the opportunity to state other forms of annual review they would prefer. The most common suggestion was an appointment with their GP or nurse at their surgery for a general health check to include a blood test. One respondent asked for an annual bone density review as some people with coeliac disease suffer from osteoporosis. 15

Question 14 5.35 Question 14 asked respondents whether they have annual blood tests for their coeliac disease. Graph 20 shows that 173 people (48%) have annual blood tests, 148 people (41%) do not have an annual blood test, with 38 people (11%) saying they did not know if they have an annual blood test. Graph 20: Do you have an annual blood test for your coeliac disease? Questions 15 5.36 Question 15 asked whether respondents received any gluten-free products prescribed by their GP. The results showed that 295 people (82%) receive prescriptions and 64 people (18%) do not receive prescriptions, as shown in graph 21. Graph 21: Do you receive any gluten-free products on prescription? Question 16 5.37 Question 16 then asked whether respondents were aware of what gluten-free food products were available on prescription. The answers showed that 292 people (81%) were aware, 66 people (19%) did not know and one person did not answer this question. This information is detailed in graph 22. 16

Graph 22: Are you aware of what gluten-free foods are available on prescription 5.38 When this is broken down further, of the 295 people who receive gluten-free food on prescription, 46 people (16%) were not aware of all the gluten-free foods available. Of the 64 people who did not receive prescriptions, 20 people (32%) knew of the foods available with 43 people (68%) not being aware of this. One person did not complete this question. Question 17 6.39 Question 17 asked respondents to list five gluten-free products they use the most, including prescribable and non-prescribable products. There were a wide range of products listed with some people listing just one or two and others putting down up to six items; over 1,500 items were listed in all. Graph 23 shows the top items that were listed. Graph 23: The top gluten-free foods purchased 17

5.40 People did not specify which items were purchased on prescription, but they did list manufacturers, supermarkets and types of items, such as bread and these are detailed below: Glutafin items included: bread, bread mix, flour (plain and self-raising), digestive biscuits, high fibre rolls, pasta and crackers. Mrs Crimbles cornflakes, crackers, cakes, stuffing, pastry and sponge mixes Juvela bread, pizza bases, rolls, pasta, oats, biscuits and bread mix Kalco cereals and biscuits Nairn s porridge oats and oatcakes Dove flour Genius bread 5.41 All of the major supermarkets were listed: Tesco, Sainsbury s and Morrison have a free from range and Asda has a gluten-free range of products. People also included Marks and Spencer items and frozen products from Asda and Tesco. 5.42 The top item was bread and the types of bread included: Juvela part baked Tesco multi seeded Warburton gluten-free fresh white sliced Glutafin gluten wheat free white and brown supermarket bread 5.43 Second on the list was pasta and this included various types: spaghetti macaroni lasagna tagliatelle fusilli penne pasta shells 18

Question 18 5.44 Question 18 asked respondents how easy they find it to manage their diet and gave them a choice of answers. The responses showed that 102 people (28%) found it easy, 226 people (63%) said that it was usually ok, with 24 people (7%) saying it was not easy. Four people (1%) found it difficult and three people (1%) did not complete the question. These responses are broken down in graph 324. Graph 24: How easy do you find it to manage your diet? 5.45 Respondents were given the opportunity to add any comments about how easy they find it to manage their diet. There were a lot of comments and the main themes are shown in 5.51 on page 21. Coeliac UK 5.46 People stated that Coeliac UK is very helpful and provides a lot of useful information. Eating out 5.47 People find that eating out is very difficult and there were concerns expressed about food contamination in particular. Also, going on holiday causes problems both at home and abroad. 5.48 Other people think that coeliac sufferers are fussy eaters. Supermarket products 5.49 People stated that they have to spend a lot of time reading food labels. However, supermarkets are getting better, although this could be improved. 5.50 People found that gluten-free products were much more expensive to purchase and sometimes for smaller quantities. People who can cook found it much easier, such as making their own cakes and biscuits. Table 25 on the next page compares the prices of the top gluten-free products purchased (item 5.38 on page 18), for three supermarkets and the equivalent non gluten-free products purchased at Asda. Xanthium gum was only available from Asda for 2.50. 19

Groceries Asda (free from) Bread 1.75 Tesco (free from) 1.98 (Warburton) Sainsbury s (free from) 1.99 (soft brown) Gluten equivalent (Asda) 0.65 Pasta (500g) 1.35 1.40 1.49 0.98 (1 kg) Flour (plain/self-raising) Cereals (Cornflakes 500g) Biscuits (sweet/savory) Bread rolls 1.65 1.70 (Doves 1 kg) 1.50 2.00 2.25 1.70 (Doves I kg) 1.65 (1 kg) 2.08 (Kellogg s) 1.58 1.40 1.35 0.55 2.00 (Genius 4 rolls) 2.00 (Genius 4 rolls) Crackers 1.98 (DS) 1.50 (Nairns) Bread Mix 1.68 (Doves) 2.00 (Mrs Crimble) 2.19 (4 rolls) 0.74 (6 rolls) 1.60 (Mrs Crimble) 2.00 (Mrs Crimble) 1.00 0.80 Porridge oats (450g) 2.68 3.00 2.99 0.65 Pizza bases 1.80 2.00 1.99 1.30 Crispbread 1.20 1.20 1.20 0.70 Rice cakes (100g) 0.65 0.70 0.95 (130g) 0.78 (200g) Gravy mix 0.90 (Kalco 35g) 2.00 (Atkins 30g) 1.69 (300g) 0.78 (200g) TOTAL 20.71 22.57 23.39 12.66 Table 25: Price comparison for gluten-free food Prescription foods 5.51 There were comments regarding prescription foods such as bread; this is delivered in large quantities, which can be difficult to store at home. 5.52 Below is a sample of some of the comments that were received: Contamination is big issue for me at home and out - people not understanding that you can t have even a tiny bit of gluten without due consequences. Reading labels on everything can be tricky as the print is too small. Also dairy and soya free makes finding suitable food difficult and expensive I find it easy to manage my diet. Always warn hostess if invited out. Supermarkets are better with their free from ranges but have a long way to go 20

Difficulty is eating out or going to friends. Snacks are particularly hard to deal with when out for a day as friends have sandwiches etc. GF bread is awful unless toasted. People visiting us always eat gluten-free. Coeliac UK is a tremendous help especially translations for foreign travel. Cross contamination seems to be little understood when eating out The only problem with the gluten-free diet is making sure cafes and restaurants understand the diet clearly and also that they avoid cross contamination, as lack of knowledge by a restaurant has caused me to be ill after eating there The hardest part of being coeliac is eating out - many caterers do not understand. Social events and buffets can be difficult. Family events are ok as they are well trained, but friends find it hard to entertain and of course items are more expensive Lack of gluten-free food on available on children s menus Provision in catered university halls is very poor so I have to cook for myself to avoid contamination. Maybe a help or advice line could be provided for young people leaving a gluten-free home People in the food industry are very poorly trained - many do not understand what gluten is and the words coeliac disease cause them to move away from you Gluten-free products are very expensive in supermarkets and although cakes can be made from the flour I get, I find it difficult to have a balanced and enjoyable diet The Coeliac UK food/drink directory and their magazine is a great help. I have used some of the B&Bs advertised when going away. Also the dietary card you can get in different languages is helpful when eating out or on holiday. Although more available in supermarkets I am concerned that what is currently available on prescription will be reduced I am a pensioner and find gluten-free food very expensive, especially bread which I hardly eat; hence I eat crackers most days instead. Glutenfree products on prescription are now almost non-existent so there is no help available to people on low incomes Expense limits what we buy as some items on prescription have been declined by my local GP. As a family we tend to eat a gluten-free diet There is an insufficient choice of gluten-free food available in supermarkets and they are expensive. Difficult eating out as there is a lack of knowledge in restaurants/cafes to the meaning of gluten-free. Much of the commercially produced gluten-free food is very tasteless Gluten-free food is so expensive to buy in the shops, for example bread, pasta and oats can be two or three times more expensive. We need to be able to get these basic foods on prescription I like genius bread but on prescription, but you get six loaves which is difficult to store I have never been a hospital in-patient but I know from other coeliac that it can be surprisingly difficult to ensure food is gluten-free. It seems that serving staff are often not coeliac aware 21

Much more help from dietician and nursing staff on practicalities of feeding yourself is needed. I am a recent widower, living on my own and feeding myself is an added burden When you live within a family unit it is very difficult at times to actually cook the same meal for everyone and I feel isolated at times because I may have to cook or prepare something different I find most gluten-free food boring, tasteless, expensive and unexciting. Producers are afraid to use salt and sugar the food is bland. I do make my own bread Primary school staff need to be educated each year, when change of class, despite information provided in hard copy to the school at the start. We use full allocation of prescription each month I cook all my own foods do not trust some products. I am alright. If I eat out, go on holiday or visit family I have major problems as they forget about contamination. Coeliac Society are doing good job with awareness to catering agencies. My granddaughter was told about it in cookery lessons at school I usually avoid gluten through cooking my own food and avoiding it through choice rather than replacement foods. But eating out is getting so much easier - Pizza Express do a GF pizza - much easier now than a few years ago I live as a resident in a care home and I am very reliant on the knowledge of carers and other staff, especially when there are staff changes 6 EQUALITY AND DIVERSITY MONITORING 6.1 Somerset CCG is committed to providing equal access to healthcare services for all members of the community. To achieve this, monitoring information is gathered from everyone who completes questionnaires and surveys which helps ensure that the most effective and appropriate healthcare is delivered. The monitoring forms are completed entirely voluntarily and all the information collected is anonymous. 6.2 This section is based on the responses of 332 people as 17 people chose not to give this information and ten were children aged 16 and under. 6.3 The following section shows some of the information that is gathered: 22

Age groups of respondents 6.4 The age groups of respondents have been broken down into groups shown in graphs 26 and 27. Graph 26: Age groups of respondents Graph 27: Breakdown of age groups Gender of respondents 6.5 The questionnaire was returned by 99 males and 243 females. The percentage breakdown of this is shown in graph 28. Graph 28: Gender of respondents 23

Marital Status 6.6 The breakdown of marital status of respondents is shown in graph 29. Graph 29: Marital Status Are you a carer? 6.7 Respondents were asked whether they considered themselves to be a carer. A carer provides care for anyone (such as a parent, child, other relative, an elderly person, friend or neighbour) who has any form of disability (sensory loss, physical, learning disability, mental health problem) long-term or terminal illness. 6.8 The responses to this question showed that 30 people considered themselves to be a carer and 206 said they were not a carer. These are detailed in graph 30. Graph 30: Are you a carer? Disability 6.9 Respondents were asked whether they considered they had a disability. The Equality Act 2010 says that a person has a disability if they have a physical or mental impairment which has a long term and substantial adverse effect on their ability to carry out normal day to day activities. Physical or mental impairment includes sensory impairments such as those affecting sight or hearing. 6.10 Respondents were asked whether they considered they have a disability and if so, the type of disability. 61 people (19%) said they had a disability, 256 (78%) said no, three people (1%) did not know and six people (2%) did not answer this question. The responses to this question are shown in graph 31 on the next page. 24

Graph 31: Do you consider that you have a disability? 6.11 There were 61 people who said they had a disability and the breakdown of the types of disability is shown in graph 32. Graph 32: Types of disability 6.12 The final two questions asked whether respondents considered that they had a religion and their nationality. Graph 33, on the next page, shows the breakdown for religion. There were ten people who indicated they had another religion and these were: Buddhism Jehovah s Witness Pagan/Buddhism Quaker Roman Catholic 6.13 A complete list of religions given is shown on page 8 of the Consultation document in Appendix 1. 25

Graph 33: What is your religion? 6.14 For nationality 98% of respondents said they were British or English with one European and one Polish. Four people did not state their nationality. This is shown in graph 34 on the next page. Graph 34: What is your nationality? 7 CONCLUSION Service Proposal 7.1 The consultation was based around the potential services for people with coeliac disease and 69% (249 people) said they wanted an annual assessment with a specialist coeliac dietitian, which would include blood tests and an assessment of symptoms via questionnaire, with tailored personalised advice via a one-to-one appointment with the dietitian, if required, with onward referral to the GP or gastroenterologist if necessary. 7.2 The first choice for potential additional support for people with coeliac disease was to improve training of health professionals, including GPs and practice staff. 7.3 These key points were repeated throughout the document by respondents and are reflected in the recommendations. People kept referring to better training for health professionals, especially GPs, so they would recognise the signs of coeliac disease much sooner. People find it very hard to get referrals to dietitians and in the early stages of diagnosis this is important as they need help adjusting to changes in their diet and finding out what they can or cannot eat. 26

Diagnosis 7.4 A number of people stated that they relied on other family members or friends already diagnosed as coeliac to help them out when first diagnosed. There is no support network for children with coeliac disease and it was suggested setting up groups where children with coeliac disease could meet and talk to each other. 7.5 Coeliac disease was diagnosed at all ages, the highest number of diagnosis was in the age range 60 to 69 years and the average age of diagnosis, against the total number of people who responded, was 50 years. The youngest person to be diagnosed was a baby under one year old. The oldest person was diagnosed at 90 years old. 7.6 The most common time for diagnosis was between one and six months with 120 people (33%) being diagnosed within this timeframe. It took over a year to diagnose 151 people (42%), of these people it took over twelve years for 56 people (15%) to get diagnosed and these people ranged in age from 35 to 87 years old. 7.7 The highest number of patients, 144 people (40%), were only given one test before they were diagnosed with coeliac disease and the highest proportion of these, 79 people (55%) had an endoscopy. Coeliac UK 7.8 Of the people who responded to the consultation 338 (96%) joined Coeliac UK and 311 people (87%) are current members. There were lots of positive comments about Coeliac UK saying they provided a lot of useful advice and information, especially around food and diet. Annual Review 7.9 A high proportion of respondents 207 people (58%), had seen a health professional in the last twelve months of whom 107 (20%) saw a dietitian. 143 people (40%) had not seen a professional in the last twelve months with nine people (2%) not giving a response to this question. 7.10 When asked who they would prefer to see for an annual review 123 people (30%) said they would prefer to see a specialist coeliac dietitian based in the community. The type of annual review respondents would prefer would be an outpatient appointment in a community hospital, requested by 132 people (35%). Gluten-Free Food 7.11 A high proportion of people (82%) said they receive gluten-free products prescribed by their GP and of these 46 people (16%) were not sure of the full range of products available to them on prescription. When listing the gluten-free products they used there was a wide range given. 7.12 Common themes around food included the high price of gluten-free products, having to read labels thoroughly to ensure food is gluten-free and only being able to get prescription bread in bulk so people need to have space to store it. Glutenfree prescriptions have to be obtained from GPs and it was suggested it would be quicker if patients could order directly from the pharmacist as this would also free up some GP appointments. People said that a list of gluten-free products available on prescription would be useful. 27

7.13 Some people said they made their own bread and cakes, which was reflected by flour and bread mix appearing high on the list of gluten-free products used. Coeliac disease did appear to run in families and some people noted that the whole family would eat gluten-free whereas others stated it is difficult cooking separate meals. Managing Coeliac Disease 7.14 Only 28 people (8%) found managing their diet not easy or difficult with the most challenging area eating out. A lot of people who said they found it easy to manage also said that eating out is difficult and going to family and friends can be difficult. Contamination was another concern that was frequently mentioned. 8 SURVEY RECOMMENDATIONS FOR CONSIDERATION BY SOMERSET CCG 8.1 From the information gathered during the consultation process the recommendations would be to: improve training of health professionals have annual assessments for people with coeliac disease with a specialist coeliac community dietitian at a community hospital make more information available to patients who are newly diagnosed with coeliac disease, even if they are just put in touch with Coeliac UK set up a support network for children with coeliac disease publicise what food is available on prescription publicise coeliac disease in catering establishments send this document to supermarkets 8.2 The biggest issue for people with coeliac disease is managing their diet and the results of the consultation show that it would be a great opportunity to hold an event for people with coeliac disease promoting gluten-free healthy eating and enlisting people to participate in local support groups. 28

Proposals for new health services for coeliac patients in Somerset Have Your Say Your feedback will be used by Somerset Clinical Commissioning Group in considering additional services for coeliac patients. Closing date for responses 23 October 2013

Introduction Somerset Clinical Commissioning Group is seeking the views of patients with coeliac disease, staff, and partner organisations on service improvements and additional new services that you believe should be provided to support patients in the diagnosis, treatment, and on-going monitoring of coeliac disease. Your feedback will be used to inform decisions on the services to be provided across Somerset for patients with coeliac disease. If you would like more information on coeliac disease, please see the attached fact sheet. The consultation starts on 9 September 2013 and will close on 23 October 2013. During the consultation period, we will also be meeting with partner organisations and community groups to seek feedback on the proposals. Completing the feedback form For each question please tick clearly inside the box. Don t worry if you make a mistake, simply cross out the mistake and put a tick in the correct box. Your response to this questionnaire is anonymous unless you choose to give us your name and address. We do ask that you provide some simple information about yourself and your interest in this new service. Please forward completed feedback form to: Please send us your comments by post or email to the address below. Coeliac Disease Consultation Ann Anderson Director, Clinical Commissioning Development Somerset Clinical Commissioning Group Wynford House Lufton Way Yeovil BA22 8HR or email: ann.anderson@somersetccg.nhs.uk An electronic version of the form can be downloaded from the Somerset Clinical Commissioning Group website at www.somersetccg.nhs.uk or be requested via the email above. We would like to thank you for taking the time to give us your feedback. Your views and comments are really important and will help us ensure we provide services that are designed to meet patients needs. This document is available in other formats and languages by telephoning 01935 385020. Thank you for your time 1

Proposals for new health services to support people in Somerset with coeliac disease What support is currently available? It is recommended that people with coeliac disease have their condition reviewed annually by a healthcare professional. National guidelines suggest this annual review should include: - A blood test, including those to check iron, vitamin b12 and folate levels - Assessment of compliance with the gluten-free diet - Assessment of symptoms (e.g. bowel function, weight loss etc) - Assessment of and advice on how to manage the increased risk of osteoporosis In Somerset, following a diagnosis of coeliac disease, patients are initially seen by the Gastroenterologist and a dietitian based at the acute hospitals. However, the service offered for annual reviews is currently inconsistent, with some patients being reviewed by their Gastroenterologist, some their GP or a dietitian or some not being reviewed at all. Additional support for patients with coeliac disease is available via the Coeliac UK website and telephone helpline. This UK leading charity for people affected by coeliac disease also runs a support group in West Somerset, however there is not currently one for the rest of the county. Somerset Clinical Commissioning Group Somerset Clinical Commissioning Group (CCG) is now authorised to take on statutory responsibility for commissioning NHS Services. The purpose of Somerset CCG is to improve the experience of health and wellbeing of our local population: by fostering an environment that promotes people, families and communities taking responsibility for their own health and wellbeing and tackles inequalities by ensuring everyone can access integrated services which are flexible and responsive to their needs by commissioning services which deliver high quality, timely, efficient and cost effective care In Somerset, the CCG wants resources to be used to the best effect to help people live healthier and longer lives. Dietetic advice in Somerset is provided by hospital dietitians and dietitians in the community, through a referral from your GP. 2

Service proposals The following new services and support are suggested for patients and are described in more detail below. We would like to know what you think will make having coeliac disease easier to deal with and, if you have any other ideas please add them in the box at the bottom of this section: - Somerset based group education session to run twice a year by dietitians specialising in coeliac disease - Annual assessment with community dietitian specialising in coeliac disease - Local support groups to be run by volunteers - Leaflet to provide information on gluten-free foods available on prescription - Information available via the internet, mobile phone apps, literature and Coeliac UK - Improved training of health professionals including GPs and practice staff Other services When will new services be delivered? Feedback information will be collated by Somerset CCG and new services for coeliac disease agreed. The start dates of new services will be found on the Somerset CCG website. www.somersetccg.nhs.uk 3

Have Your Say Please can you answer the following questions: 1(a) Potential services for people with coeliac disease Please rank the proposed services in order of your preference, first, second and third. Service Proposals Somerset based group education session, twice a year, delivered by a specialist coeliac dietitian. Topics to be covered would include: update on gluten-free foods, information on prescriptions, dietary advice, latest research, hot topics. Individual annual assessment would not be included as part of this service. Annual assessment with specialist coeliac community dietitian, which would include blood tests and assessment of symptoms via questionnaire, with tailored personalised advice, with a one-to-one appointment with the dietitian if required, and on-ward referral to the GP or Gastroenterologist if necessary. Continuation with the current model of care with some patients being reviewed by their Gastroenterologist and some patients being reviewed by their GP or a dietitian but with some patients not receiving an annual review. Order of Preference 1(b) Potential additional support for people with coeliac disease Please rank the proposed developments for additional support in order of your preference, first second, third and so on. Further information proposals Local support groups to be run by volunteers Leaflet to provide up-to-date information on gluten-free foods available on prescription Provision of supporting information which is freely available via the internet, mobile phone apps, printed literature and Coeliac UK Improved training of health professionals, including GPs and practice staff If you have any additional ideas for a service, please state them here. 4

2 Does anyone else in your family have a diagnosis of coeliac disease? Yes No Don t know 3 How old were you when you were diagnosed with coeliac disease? years old 4 Did you experience any symptoms before your diagnosis of coeliac disease? Yes No If yes, please tick all the symptoms you experienced: Diarrhoea Faltering/slow growth Persistent nausea and/or vomiting Feeling tired all the time Recurrent stomach pains, cramping or bloating Sudden or unexpected weight loss Iron-deficiency anaemia or unexplained anaemia Other (please state) 5 Were you previously diagnosed with irritable bowel syndrome before your diagnosis of coeliac disease? Yes No 6 How long did it take for you to be diagnosed with coeliac disease from first seeing a doctor about your symptoms? 1 month 1 6 months 6-12 months 1 3 years 4-6 years 7-12 years 12+ years 7 How was your diagnosis of coeliac disease confirmed? (please tick all that apply) Antibody blood test Genetic blood test Endoscopy Biopsy 8 Do you feel you were provided with sufficient information about your condition that was easily understandable? Yes No Any comments you would like to make about the information you received 5

9 Following your diagnosis of coeliac disease did you join Coeliac UK? Yes No 10 Are you currently a member of Coeliac UK? Yes No 11 Have you seen any healthcare professional for your coeliac disease in the last year? Yes No If Yes who have you seen? (tick all that apply) Dietitian Gastroenterology Consultant GP Nurse Other, please state who 12 It is recommended people with coeliac disease have a review of their condition every year. If annual reviews were offered, who would you prefer to complete that review? Specialist Coeliac Dietitian based in the community Specialist Coeliac Dietitian based in the hospital Gastroenterology Consultant based in the hospital GP Other, (please state who) 13 What form of annual review would you prefer? (please tick one option) Completion of simple questionnaire via post Completion of simple questionnaire via internet Telephone review Outpatient appointment in an Acute Hospital (i.e.: Yeovil District or Musgrove Park Hospitals) Outpatient appointment in Community Hospital Other, please state 14 Do you have a blood test annually for your coeliac disease? Yes No Don t know 15 Do you receive gluten-free products prescribed by your GP? Yes No 16 Are you aware of what gluten-free food prescriptions are available to you? Yes No 6