Q1 Which of the following applies to you?

Transcription

1 Q1 Which of the following applies to you? Answered: 80 Skipped: 1 I have coeliac disease I am the parent/guard... I am a carer of an adult... I am responding o... I am a clinician, f... I am responding o... I do not have coeliac disease I have coeliac disease I am the parent/guardian of a child with coeliac disease I am a carer of an adult with coeliac disease I am responding on behalf of someone who has coeliac disease I am a clinician, for example a GP/nurse or consultant (please state below) I am responding on behalf of a group or organisation (please state below) I do not have coeliac disease 76.25% % % % % % % 1 Total 80 # Other (please specify below) Date 1 I have a daughter who developed type 1 diabetes at 12 years old. The hospital told us she did not need a special diet only to eat healthily re low fat and low sugar. So how can Diabetics, people with high blood pressure and people with high cholesterol benefit by prescription diet food. What food! Bread is part of a balanced diet, and to say we can eat rice and potatoes instead is very condescending. A lot of coeliacs might not be able to afford to spend 3 on a small loaf of bread, and other gluten-free products sold at inflated prices. What we need is affordable gluten-free food to live like everyone else. 2 My daughter also has Coeliac disease, aged 22 and live with us, so I buy and we both currently get prescriptions for gluten free food 3/22/2016 4:57 PM 3/18/ :15 AM 3 Dermertitus herpetiformous 3/10/2016 6:51 PM 4 Paediatric Consultant who specialises in Gastroenterology and undertakes Coeliac Clinics for children under 16 years of age at Southend University Hospital 3/10/2016 8:57 AM 1 / 10

2 5 I am also a diagnosed Coeliac since 2011' 3/7/2016 3:26 PM 6 lactose intolerance 3/5/2016 2:05 PM 7 My daughter and granddaughter also have coeliac disease. 3/4/ :28 AM 8 Dermatitis herpetiformis to be precise 3/2/2016 9:11 PM 9 Nurse practitioner in general practice and parent of a child with coeliac disease 3/2/2016 5:34 PM 2 / 10

3 Q4 Do you (or the person you care for) receive gluten-free foods on prescription? If the answer is no, please go to question 6. Answered: 81 Skipped: 0 yes no yes no % % 0 Total 81 3 / 10

4 Q5 If you receive gluten-free food on prescription, please tell us why? (tick all that apply) Answered: 78 Skipped: 3 I am on a low income The food available on... The choice is limited wher... It helps ensure I hav... I am eligible for free... I have coeliac disease and... I am on a low income The food available on the High Street/in supermarkets is too expensive The choice is limited where I live It helps ensure I have regular GP check-ups I am eligible for free prescriptions I have coeliac disease and believe the NHS should provide gluten-free food for me 19.23% % % % % % 45 Total Respondents: 78 # Other - please state below Date 1 Cost of gluten-free food on High St is 2-3 times higher for loaf of bread and cornflakes. I would be very ill if I took gluten. I believe the prescription items helped save my life over 40 years ago. No medication could help. I do not often need NHS help, as I am now a healthy healthy 82 year old on a gluten-free diet. Bread is a necessary food item. I buy other gluten-free foods such as mince pies and Christmas cake. 2 On prescription a month I have 8 small loaves & 6 packs of 5 rolls (30 rolls) which gives me 1 small roll a day. I have phoned Juvela and the cost to buy these products would be 55 a month or nearly 13 a week. The High Street and Free From range in supermarkets is equally expensive. Juvella (6 pks rolls 30) + (8 loaves - 400g each - 25 = 55) 3 When I was diagnosed,20 ish years ago, I was prescribed gluten free food by GP. GF food was not generally available in supermarkets. 3/29/2016 1:55 PM 3/22/2016 4:57 PM 3/21/2016 8:46 PM 4 / 10

5 4 I have been diagnosed with coeliac disease for 7 months. In this time the money I have to spend on food has increased by 50 a month, this is largely due to the increased cost of gluten free food. Gluten free food products tend to be at least double the price of ordinary food and you get less than half the amount that you would find in a normal food item. For example for a pack of 4 gluten free hot cross buns you would have to pay 3, a pack of 6 normal hot cross buns would cost 80p (I understand that this food item is not an essential dietary staple but it gives a clear indication of the increased cost of a popular food item). I relieve only bread and rolls through my prescription. Everything else I eat I either buy from a supermarket or make myself with gluten free ingredients. If I had to purchase my Juvela bread and rolls on top of the other items I already buy myself I would have to spend an extra 55 a month, I would not be able to easily afford this and would have to change my diet to accommodate this. The bread and rolls that coeliacs can buy from the supermarket are also not of the same quality as the products we can receive on prescription. The bread and rolls I receive on prescription are high in fibre, whereas the bread and rolls you get from a supermarket tend to be higher in fat and have less fibre. You have mentioned that the NHS does not provide dietary help for patients suffering from diabetes and high blood pressure, however, as a health professional (physiotherapist) I understand that these patients benefit from a low fat and sugar diet but this is more of a lifestyle choice to eat healthily and in moderation rather than set restrictions on diet that coeliacs have. 5 I have coeliac disease and believe the NHS should provide some of my food for me as the prescription items are a better quality, taste better and are too expensive to buy in shops. What is available in shops is too expensive to buy all the time and taste is not so good. 6 I only get bread/rolls for my daughter on prescription but would be lost without it as she is highly allergic to egg and the edible bread products in supermarkets all contain egg. 3/21/2016 5:27 PM 3/18/ :15 AM 3/16/2016 3:32 PM 7 School student 3/15/2016 8:38 PM 8 I only have flour, bread and rolls, all of which I find are far preferable to anything I have tried from the shops. I use Juvela products which cannot be bought in any shops due to NHS/government restrictions. 9 I have ticked the above boxes on behalf of the children under my care who are on gluten free diet. I strongly feel that children should still receive gluten free food on prescription. Otherwise, the danger is that some parents might not buy the expensive food that they require. This can lead to child either having inadequate nutrition or having inappropriate gluten containing food. The risk of noncompliance to gluten free diet is that of significant morbidity and even mortality. The cumulative cost this will entail to health care and negative impact to a child s health and education cannot justify the small amount of cost saving. We need to look at the long term and bigger picture before considering this 3/15/2016 2:21 PM 3/10/2016 8:57 AM 10 I pay for a pre paid prescription each year 3/6/2016 1:46 PM 11 I have to travel to a large supermarket to shop for g/f food. I do not buy g/f biscuits, cakes, cereals and other high calorie products. Since being diagnosed with coeliac disease, I am very careful with my diet, not to just save myself from the effects of eating gluten, but to remain healthy and fit and not expecting the nhs to deal with the results of a unwise diet. My wife cooks for me, using a glutenfree mix and makes bread with the same mix. Supermarket g/f loaves might look OK (at extortionate cost), but I can assure you taste is poor. The loaves I have on prescription are brown and seeded - very small and get dry very quickly, but is far superior to supermarket loaves. I have never been able to buy it at a supermarket, so I take enough on holiday to last me. Having a g/f diet is not a fad, its restrictive and expensive - I eat out rarely and with little choice. 12 1) Food available to order on line is also too expensive. 2) Certain brands available on prescription are only available to buy on line 3) Food should be restricted on prescription but should also include oats and cereals 13 Why should I pay inflated prices for products that are smaller in quantity than gluten containing equivalent products. The government should subsidise the nhs to continue to provide these products on prescription 14 I only use the free prescription for foods that otherwise are very expensive to buy and not always readily available. I also purchase many products for myself, all of which are also very expensive. 3/4/2016 4:27 PM 3/3/2016 8:29 PM 3/3/2016 6:09 PM 3/3/ :58 AM 15 In order to buy gluten free bread or flour I have to travel out of Rochford as no stores stock them locally. 3/2/2016 5:13 PM 16 I only have cereals on prescription 3/2/2016 3:44 PM 17 I believe that bread should be supplied on prescription. 3/2/2016 1:00 PM 18 I receive Juvela flour,cereal and bread and it is only available on prescription.shop bought gluten free food contains other ingredients that i react badly too,such as vinegar,maltodextrin and dextrose. I am ok with Juvela and Glutofin. 19 Gluten free food is medicine for my daughter coelic disease the same as insulin keeps a diabetic alive. I could not afford the basics without the back up of a prescription. We only want the basics, not the biscuits that people are so up in arms about! 20 coeliac disease is a lifelong condition requiring a special diet, cannot be compared to diabetes which doesn't need specialist food but a restriction on 'normal' food. 3/2/ :34 PM 3/2/2016 8:03 AM 3/2/2016 8:00 AM 5 / 10

6 Q6 Please select the one option below you most with Answered: 80 Skipped: 1 Gluten-free food should... No gluten-free food should... Some gluten-free... Some gluten-free... Gluten-free food should continue to be available on prescription as it currently is, with no change. No gluten-free food should be available on prescription. Some gluten-free food should be available on prescription but only for those who currently receive free prescriptions. Some gluten-free food should be available on prescription but this should be restricted to only bread and flour % % % % 21 Total 80 6 / 10

7 Q7 I understand the reason my CCG is reviewing whether or not to continue offering gluten-free food on prescription. Answered: 79 Skipped: 2 dis strongly dis dis strongly dis 6.33% % % % % 23 Total 79 7 / 10

8 Q8 It is appropriate that the NHS provides gluten-free food on prescription for those who need it. Answered: 81 Skipped: 0 dis strongly dis dis strongly dis 80.25% % % % % 0 Total 81 8 / 10

9 Q9 People who need gluten-free food should buy it themselves. Answered: 80 Skipped: 1 dis strongly dis dis strongly dis 1.25% % % % % 45 Total 80 9 / 10

10 Q10 It is difficult to find gluten-free food in my locality. Answered: 79 Skipped: 2 dis strongly dis dis strongly dis 16.46% % % % % 4 Total / 10