Appendix 3: Full Narrative from Survey Monkey - Section 1: Prescription of Gluten-Free Foods. What impact might this proposal have on your diet?

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1 Means tested like most of the services Present basis seems fair. No "luxury" foods are at present included in mid- Essex, i.e. sweet biscuits and cakes. Most coeliacs including me do not use their full entitlement but foods we do get are very necessary. Please see e mail sent by me separate to this survey. It should still be made available to children and low income families resident in the uk and entitled to NHS treatment and paid for by others such as migrants and By clinical need Some of the foods most useful to me (i.e. part-baked bread, loaves and cereals) are simply not available commercially and some that are are not reinforced with the extra vitaminsiron,, etc. that coeliacs need. The cost is a huge implication both for me and to a greater extent for those with familities to support. Severely restricted GF diet. No choice which would it difficult to adhere to a GF diet. Cost of travelling to supermarkets (nearest is 26 mile round trip) to obtain GF food as GF food is very restricted in Burnham plus with little choice. Maintain a healthy balanced diet Better diagnosis would be good. Much damage is done before diagnosis so GPs being more aware of symptoms (i.e. unexplained infertility, excessive tiredness, bowel problems) would help, especially as much coeliac disease is wrongly diagnosed as IBs or Crohn's Disease or similar. I have been given more advice a guidance by the Coeliac Society than I have received from health professionals. I also have to pay a fee to be a member of the Coeliac Society. I feel this is wrong considering the poor health consequences of not adhering to a gluten free diet. Consult with dietician Alteration to current proposals (especially basic foods) will have a deleterious effect on many coeliacs who use the service at present. Please see e mail sent separately. People with coeliac disease can manage their condition by maintaining a healthy balanced diet by using substitues that will not affect them - research is invaluable staple foods i.e bread flour SOME PEOPLE WILL NOT BE ABLE PAY FOR THESE ITEMS it would not impact on my diet but financially would a difference Continue as you are doing I am pleased with the way the Coeliac Society deal with everything N.B. Some content has been redacted (xxxxxxxxxx ) to preserve anonymity Page 1

2 Keep the same as now because ALL others foods listed as precribable have already been stopped - so diet is already limited. You have already massively reduction the amount to half of what is had been! There are already limitations on what i can eat. This is a vital part of the diet for many coelliacs and this adds a huge cost to their overall food bills. These products should be avaialble on prescription as it is part of their medical treatment Gluten free foods are very expensive and a high majority of people who area coeliacs are of retirement age and do not have the money to buy the product from supermarkets. This will mean that they will go without or eat food that contains gluten which would them very ill and put more strain and expense on the health service by having to treat them. As i would have to pay for the basic staple of bread this will impact on my ability to have a wider range of foods. I already have to pay for many itme which are far more expensive than their non gluten equivalents. I also have to follow a wheat free and gluten free diet as i have a severe form of Coeliac Disease. Due to changes in EU regulations covering health foods, many gluten free products are allowed to have a small proportion of wheat - i cannot have these foods as they me ill. It will have a big impact on diet which will effect my health and well being All though Coeliac disease is now becoming more known then it was years ago there is still very little information advertised on it especially in doctors surgeries and chemist, so advertising and information should be more available. Have you approached Simon Burns MP to see if he can lobby parliment / adivse of additional funds / grants. Approhced MEPs for grants etc from Brussells? National and healthy lotteries are also bodies which awards funing grants. I can not understand why the producers of Gluten free food charge so much for their products and feel that this is something the government should be looking into. N.B. Some content has been redacted (xxxxxxxxxx ) to preserve anonymity Page 2

3 It costs me a lot of money to buy gluten-free (g/f) food. There's a published statement that the price of a prescribed loaf of bread is the cost of the prescription. But that's not the cost of one loaf, it's the cost of eight loaves. A g/f loaf in any shop is more than 3 - for one loaf. To buy everyday g/f food, e.g. sausages, burgers, breakfast cereal, custard powder, baked beans, etc. is expensive. All cost about 35% more than other food. I'm unable to bake as my hand joints are affected by rheumatoid arthritis so I don't have g/f flour on prescription. If g/f prescribing ceases I don't know what I'll do. I know I wont be able to cope financially with the cost of providing for this diagnosed condition. Just one accidental dietary error, e.g. trusting that the café chef has really provided me with g/f gravy, causes Seriously I will have to stop reading the me serious bowel and skin problem after-effects. I won't be able to cope - I labels on essential food items because have neither the finances nor the physical ability to bake. Reduce the list the g/f stuff is just too expensive, e.g. of prescribables but please, please don't stop the absolute basics like bread Genius bread. It doesn't taste like and cereal. I'll have no alternative to eat wheat/gluten containing food. polyfilla but it costs the earth. Set up local Coeliac groups at GP practices. Members could share information, bulk purchases where the minimum quantity ordered from a supplier is too large for a single/older/w.h.y. patient. S/he could then share the order and the cost with others. I appreciate being asked to contribute in this way and I hope to goodness that other current schemes like the proposed elimination of Waste Medication will help to more sense of the budgetary limitations. I think a possible restriction on the number of items which can be prescribed per person. I could manage with the one, and only, item I have via Prescription, but that is very valuable to me. As far as I am aware, I am unable to purchase the packets of Bread mix which I obtain via prescription and I am not keen on most of the ready made loaves available in Supermarkets, which get stale very quickly. Some are like eating cardboard. Access to a Dietician when and if necessary. I accept that other people have dietry problems, but feel there should be some support and recognition of the fact that, diagnosed Coeliacs keep themselves fit by strictly adhering to their diet, thereby preventing possible future health problems which could be a further strain on the NHS. This cannot be said of some other groups who should follow sensible diets, but do not help themselves. Many Coeliacs would love to eat 'normal' food. There are now plenty of foods available to buy in the supermarkets. prescriptions should no longer be given. Basic staples are essential for a balanced diet. Commercial free from foods are still more expensive than non gluten free equivalents. May be the CCG should employ more dietitians who can regulate and recommend the appropriate prescription foods - over all this would save money. Encouragement to attend local support groups. Education support groups N.B. Some content has been redacted (xxxxxxxxxx ) to preserve anonymity Page 3

4 We cannot buy the gluten free bread for our son in stores as they do not sell it, most gluten free bread contains egg which he is also allergic to. If the food cannot be sourced locally I feel it should still be offered on prescription. I only have bread on prescription, as I am a pensioner money is tight and I find that the bread I receive is a major part of my diet. Less bread to eat! It should stay as it is! I think affected patients should be offered gluten-free basic items at the same cost (on average) as a similar sized gluten-free item in the supermarket, with the remainder of the cost being covered by the NHS. If the gluten-free items are cheaper in the supermarket why can't the NHS use the same supplier/wholesaler? He would have no bread as no shop actually sells it, would severely restricted his already very limited diet. Expand not shrink the range of foods available. I think there should be means testing as with other products on prescription. While gluten free products are now widely available, it is important to ensure that those patients who have recourse to few funds are not discriminated against by this change. I think there should be a consideration of this when making the decision and a full analysis of the risks (including costs to the healthcare system as a result of poorly-managed Coeliac when people are unable to afford to purchase specialist foods) should be made and published to ensure that this is a more open process. N.B. Some content has been redacted (xxxxxxxxxx ) to preserve anonymity Page 4

5 G/f staple foods should be available on prescription to those coeliacs who need them. The NHS should work with the g/f food manufacturers to reduce the cost of the products to the NHS - rather than just not providing them. The removal of gluten-free foods on prescription will adversely affect those on low or restricted incomes, those with limited or no access to online shopping, those in rural areas, and those of limited mobility. As although there is a range of g/f foods available in supermarkets - this varies widely from supermarket to supermarket. Small shops have none or only a very limited range. The prices are always higher than those for non-g/f products and the products are of variable quality. Pharmacies will usually deliver prescription items to those of limited mobility. Supermarkets would require online access, which not every one has and would also charge for May me less likely to stick rigidly delivery. Coeliacs who currently pay for prescriptions will contribute to the diet. Non compliance could towards the cost of their prescription items (with a prepayment certificate). potentially lead to other future I have done so for several years. complications. Provide regular check ups - this used to happen at a 'coeliac clinic' with a specialist in the condition. This is no longer available. There also used to be the opportunity to discuss dietary issues with a dietician if required. I could think of other areas where the NHS could save / have saved money in the past or where it could be more efficient... For example - expensive and unnecessary artwork/statues at Broomfield Hospital! Television in the waiting area at the surgery... It should be free for those people on lower incomes. Non on mine, but lots for my parent Continuing help with gluten free food. Better access to dieticians. Lobby the big supermarkets to lower to the cost of gluten free food If prescriptions for gluten-free foods are to stop, perhaps leaflets (if these don't exist, including printed ones for those without access to computers) and signposting to online guidance/online leaflets (for those that can access it) for advice on the range of products available at all major retailers. N.B. Some content has been redacted (xxxxxxxxxx ) to preserve anonymity Page 5

6 In my work I have met with families with children who absolutely struggle to give their child with coeliac disease the correct diet; they frequently buy the more expensive products and miss out on buying other things usually to the detriment of themselves. Indeed I have purchased cows milk free products for my Grand-daughter who was not able to tolerate cows milk. I was amazed at the cost eg a small packet of 'chocolate buttons' when compared with 'normal' buttons!! It has to be funded by the taxpayer. The CCG should refuse to accept the Government's allocation of funding and press for more money. When I was first diagnosed in 2009, I received flour, pasta, bread and crackers, in the last few years it has been cut back to only bread. I am struggling financially with the prices of GF products and feel I should still recieve the necessary products such as bread and pasta, I can live without the others. I think it's unfair that different places give out more, it should be the same everywhere, just the basics and the cost that the NHS pays for these products should be looked into rather than making the sufferers suffer I will eat less Provide diet sheets with suitable recipes. Allergy testing rather than having an intolerance. The prescription by the ability to pay. No one should be deprived of any medical assistance due to money, but it is reasonable to means test. None We already purchase our own Gluten free foods We do not think that the NHS can afford to purchase this food in the present economic climate. This is relevant to me inasmuch as money saved could be spent on more important things. If you only ask people getting free prescriptions you are going to get a biased view. Gluten-free products are much more freely available and I do not believe other groups such as diabetics are assisted in this way? N.B. Some content has been redacted (xxxxxxxxxx ) to preserve anonymity Page 6

7 Perhaps those with coeliac disease could be given vouchers to cover the extra cost of their foods at supermarkets or other shops & avoid the need for prescriptions. Viewing the consultation document, concern at cost to NHS when alternative in supermarkets are cheaper. Usual policy of supplier treating the NHS's cash cow for themselves. Education of the foods available, involved food retailers in the education process so those on low income are not hit the hardest. the prescription should be based on a reversed percentage of the earning capacity of parents. i.e. if they earn very less then the percentage of funded prescription should be more, and vice versa. It should surely not be prescribed for free. People need to realise that "nothing is for free". The "free" culture also drives dependence on the social system, which has to be reversed. none. Charity funding should be used for funding education & support for these individuals. Exercise advise needs to be included in their management. Religious organisational support should be used to enhance the psycological wellbeing of patients. non urgent and unnesessary services should not be offered to save NHS money. I can see more and more a systematic abuse of the free healthcare system here in UK. Ensure patients can be referred to local community dietetic teams for advice on naturally gluten free foods. n/a When 1 person in a family is on a gluten free diet then the rest of the family tends to eat the dame things, therefore it would be useful for family to have support support with learning new ways of cooking and shopping for the whole family, perhaps NHS choices could have a section on recipe ideas, a volunteer attend the dietitians clinic to give support and practical ideas, direct to facebook page etc N.B. Some content has been redacted (xxxxxxxxxx ) to preserve anonymity Page 7

8 This is a disability - help those in need of support I am unsure about the quality of supermarket gluten free products. Possible cutback in amount of bread and crackers eaten, i.e. cheese which is needed for diet. I suffer from osteoporosis as well. No change If cutbacks are needed, then NHS prescriptions could be limited to bread only, which is a basic need for everyone not only coeliacs, or perhaps only Juvenues should be allowed, flour, cereal etc. on top of bread allowance. Although I agree with the CCG proposals for adults, I think children should still be allowed gluten-free foods on prescription. It is so important they keep to the diet for long term health. Although I do agree there are a lot of things in supermarkets now, it is expensive so still important for children to have basic bread/rolls on prescription. The bread available in supermarkets does not perform well as bread or even taste very nice - Have you a non-coeliac ever bothered to try it? Bread made from either Juvela or Glutafin flour which is only available on prescription, produces a much better loaf of bread. The few boxes that my husband is allowed on his prescription managing this lifetime condition and his overall life experience so much better. My husband will not eat the alternative brands of ready made bread because they are pretty inedible, dry and crumbly. This results in him not bothering to eat which then causes health issues. The gluten free flour available in supermarkets does not a decent loaf either so this is not an alternative. Keep supplying Juvela and Glutafin flour on prescription - other products listed are available in supermarkets albeit at a considerably higher price than non-gluten free versions. Prescribe to National Prescribing Guidelines as it is a false economy to save on the cost of gluten free food as coeliac patients will suffer short, medium and long term health consequences which will cost the CCG more money than will be saved. Ensurer patients have an annual review of their condition There are plenty of cost effective ways of eating gluten free available now. Many people like me with allergies/intolerances do not get prescriptions for gluten free food and manage. N.B. Some content has been redacted (xxxxxxxxxx ) to preserve anonymity Page 8

9 of The gluten-free bread I have foods prescribed should be is NOT determined available in supermarkets. Many people are unable to afford the more than twice the price for the GF products. Yes, you say an ordinary loaf is average 1, but this a full size loaf, and the 1.50 loaf you detail is only half that size, making an equivalence of 3 times the price. How about giving people with coeliac disease a voucher to spend in the supermarket on GF bread/pasta/flours. Also, the flours are not available in the supermarket. I have only found GF flour blends, which are not necessarily fully gf, and are not suitable for many very sensitive coeliacs. I am only able to tolerate rice, potato and tapioca flours. I react to the so called GF flour blends. So do other members of my family who also suffer from coeliac disease, including my 5 year old grandson, who cannot even play with playdoh at school without a severe reaction. He cannot access the school meals that other children of his age get, because he gets "glutened". this is because most people do not understand the seriousness of our condition, and is not done on purpose. GF Pasta is also drastically more expensive than supermarket budget brands. Vouchers towards this could be issued. I see that we should not have "free" food, but to be discriminated against because of our disabilities and disease condition is not helpful to encourage people to tke their condition seriously. Give vouchers for the additional costs that are incurred. I know of some older people who have decided to come off their gf diet due to costs, even though they have coeliac disease, and how are young families, or people with low income to cope? Coeliac disease is not funny. It is debilitating if not taken seriously, and people need encouraging to do so. It will cost the nhs more in the long run to care for people with coeliac disease who have not stuck to their gf diet, as they will need additional care as their condition takes over their body. I agree that people do not need support for items such as g.f. cakes and pastries. However, most sensible on It means your diet? I shall not be able to eat any bread at all and initially, will not be able to have simple carbs. How shall I sauces and gravy etc that s my already simple meals more attractive? I shall need to know where to purchase the simple flours I use, as they are not available in supermarkets yet. As I understand my condition well, and I do not like feeling ill, I shall cope, but my meals will certainly become more boring. My strongest concerns are for the people who do not understand. I have met other coeliacs who have not had the seriousness of their condition explained, and who have said that, without their prescription, they would consider eating ordinary bread occasionally, or all the time. Also am concerned with the financial impact on many families coping with coeliac disease, so are encouraged to not follow the gf lifestyle. Also the fact that this is discrimination against us. It certainly does cost more for my weekly shop, even now, than it used to before my diagnosis. This will now rise even higher if these proposals go through, so there is often hidden gluten in products, that do not currently have to be declared on labels. e.g. dried fruit manufacturers who dust the conveyor belts with flour to stop the fruit sticking to the belts. As this is not technically an ingredient, it currently does not need declaring. This is a dangerous situation, and occurs with several foodstuffs. (including wine, which could catch some people out). Some dextrose, dextrin, maltodextrose, maltodextrin, TVP and HVP all can potentially be produced from gluten containing cereals, and these products are in many food items, including hidden in meat and other such products one may not necessarily think to check. The 3 parts per million safety rule is not stringent enough. I have had reactions to foods that I am told are safe within these guidelines, and my sensitive coeliac grandson has often become very ill eating these products. Therefore the law should be that if it is labelled gluten free, it should be TOTALLY free This is discrimination against people with coeliac of gluten, or labelled e.g. "contains disease.` Within an overall policy drawn up following consultation addressing the special dietary needs of the local population. GF basic food is considerably more expensive and certain families would find is a considerable strain for the basic i.e bread, flour etc. It should be determined by financial circumstances Personally I do not have GF on prescription, as I am able to fund my own food. The "savings" are relatively small as a proportion of the CCG budget. There should be an overall evaluation of the special dietary needs of the local population and consideration given as to how they can best be met. N.B. Some content has been redacted (xxxxxxxxxx ) to preserve anonymity Page 9

10 Let the political fat cats who these decisions come to the houses of people who have had to eat gluten and watch the pain they are in. Fully means tested with diagnosis. It's a serious condition. N N If you are diagnosed with Coeliac disease it is an illness like any other why are you then discriminated against. You wouldn't deny a heart patient tablets that keeps them healthy so why deny a coeliac basic staple products that are required to keep them healthy. It will affect quality of diet and a big impact on finances just to buy the basic products with no luxury items. Have all CCG to allow gluten free prescriptions to coeliacs, at least for staple products as they are so much more expensive from supermarkets. My ccg in Colchester has already stopped prescribing for coeliacs and I notice the financial burden of having to pay supermarket prices for all the basics. Therefore my diet is a lot more restricted now due to financial reasons. It just doesn't seem fair!! Most Supermarkets now carry a range of gluten free products so see no need for this to be available on prescription. As the name Coeliac Disease suggests, this is a disease and should be treated as such. Gluten free products are extortionately highly priced and you cannot underestimate what a help the prescription products bring to my family. These products should continue to be prescribed to persons who have been clinically diagnosed with Coeliac Disease. Should continue as a minimum to children with diagnosed coeliac disease My daughter has to follow a gluten free diet. There is no other alternative. If she is exposed to gluten she will take up more of your budget by constant doctor and consultant appointments. Believe that commercial alternatives are of inferior quality Coeliac disease can only be controlled by a strict gluten free diet for life. There are no other options. To remove this support is damaging and inexcusable. This proposal will hurt people who need your support. My surgery currently does not supply gluten free foods to me because they suggest that I should purchase gluten free foods from my local suppliers. I am financially in a position to do so. I am concerned that children or people who are on low incomes will be unable to afford to purchase gluten free foods thus making it likely that they will not be able to maintain a healthy diet and achieve the required units suggested by The Coeliac Society. In causing this to happen they are then likely to experience more medical conditions which in the long term will more expenditure to the NHS. I also dispute the costs quoted in the covering document. I am unable to purchase a loaf of gluten free bread for the figure of 1.50 from my local supermarket (ASDA) as quoted in the consultation document. This should be seen as a health requirement and not a choice and therefore should be provided for by health especially as prescriptions are paid for anyway. At present none because I am in a position to purchase gluten free foods. If however in the future my financial situation should change then I consider that the loss of free prescriptions could have a detrimental effect on my diet. Regular health checks, if necessary by a designated nurse, to ensure that patients are maintaining a healthy and balanced diet and also more frequent Dexi scan checks. I think it is unfair to expect people on low incomes to have to pay for high cost staple food items, bread in particular. Help to promote awareness of coeliac disease and its implications. N.B. Some content has been redacted (xxxxxxxxxx ) to preserve anonymity Page 10

11 Particularly low income families struggle with double or triple the costs of non gluten free staple foods such as pasta, flour, cereal and bread in the supermarkets. I am concerned they will not adhere to the gluten free diet in order to keep costs down Offer dedicated yearly coeliac clinics run by dietitians and supported by consultants in the community rather than leaving it to gp's to monitor individuals condition when they have no expert knowledge. The document suggests 100k would be saved. There must be other areas of greater cost that can be looked instead. At a cost of only 100,000 per year, gf staples should continue to be available to those with medically diagnosed Coeliac Disease. Let the retail stores offer gf "treats" and let the NHS, and therefore Mid Essex CCG, continue to provide funding for gf staples, especially as those on fixed incomes or benefits who receive free prescriptions, and those who are housebound and rely on deliveries from community pharmacies, would effectively not be able to buy them otherwise. The reduction in January 2014 in the number of gf staples available per month from 16 to 8 was made without consultation and without warning, and was made against the National Prescribing Guidelines which support the clinical decision making on the amounts of gluten-free staples people with coeliac disease can receive on prescription each month. The Guidelines assume that individuals also eat naturally gluten-free staple foods to ensure variety in the diet. This has already impacted my diet and health, as some retail gf products contain Lupin flour, one of the 14 major allergens, to which I have had an allergic reaction. Had I continued to receive gf pasta on prescription I would not have encountered this allergen nor reacted to it. I used to buy a pre-payment certificate to cover all my prescription costs, and spread the cost of gf items across the year. When my circumstances changed recently, I received entitlement to free prescriptions. With retail gf bread costing 5 times more than the loaf of As I am fortunate not to suffer I cannot omment on alternative actions Clinical support is not readily available for patients with Coeliac Disease. Since becoming a resident within the Mid Essex CCG area 16 years ago, not once has my treatment been reviewed by my GP. (When I lived in Surrey my health was reivewed annually.) Only at my insistance, and based on advice from Coeliac UK, did I obtain access to a dietician to review my adherence to the diet, and have xxxxxxxxxxxx to which I am more prone. Therefore it is essential that support to safeguard patients, such as access to specialist dietetic and nutritional advice as part of an annual review or monitoring of patient outcomes is provided. In areas where funding for prescriptions has been or is being removed, there is, or shortly will be, no opportunity to encourage dietary adherence nor will there be any prevention strategies for long term health complications associated with coeliac disease. Whilst there is more availability of gf foods in shops, it is considerably more expensive than its non-gf equivalent, of poor nutritional quality due to the higher levels of fats and sugars used, and its provision is hit and miss from one shop and one area to another. Not all supermarkets, express shops, corner shops, etc. stock gf products, particularly urban stores, making it difficult for many to access gf food, and especially for those who currently obtain gf staples on prescription for free. The annual cost of gluten-free food staples to the NHS ( 26.8m, or around 0.27% of the total prescribing budget in 2014) is significantly lower than the annual cost of other items prescribed, but available for purchase over the counter at a lower cost than that to the NHS, such as Senna (for occasional constipation) with a total cost of 32.3m and paracetamol at an annual cost of 85.1m and rising. Removing fudning for gf products on prescription, contradicts the principles that guide the NHS, in particular that the NHS: provides a comprehensive service, available to all; that access to NHS services is based on clinical need, not an individual s ability to pay; and that the NHS aspires to put patients at the heart of everything it does. NHS policy has rightly recognised that the costs associated with the treatment of long term health complications are likely to dwarf the costs associated with the prescribing of gluten-free staple foods, dietetic advice and monitoring. Cutting funding for gf Help should be available for families on low income as this food costs more. N.B. Some content has been redacted (xxxxxxxxxx ) to preserve anonymity Page 11

12 if there is no gluten-free food on prescription i would not buy it and then will go back to the normal diet. CD is lifelong condition and should be treated like every other lifelong condiotion. I would follow Coeliac UK guidelines. If this cannot be afforded I would give priority to those on free prescriptions. I would continue to allow bread, flour, possibly pasta and mixes. I would also consider prescriptions for those with medically diagnosed multiple food allergies and for non Coeliac gluten intolerance. I am concerned that some patients will be deterred from following their diets. Supermarket products which are cheaper are not always fortified with vitamins/minerals that would be in regular products or might be in prescribable products. This means that their diets may no longer be nutritionally adequate. There can be long term health consequences from not following gluten free diets in this condition which will cost the NHS money. Employ more dietitians as dietetic led coeliac clinics are used in some areas. Facilitate self help groups. See 14 Some areas have changed the way they manage these prescriptions and saved money whilst improving the service, I think alternative options should be researched and considered. If I was working I would not mind paying for my gluten free products but as I am a pensioner and my funds are limited so I think we should get this on prescription as the price of gluten free is much more expensive than normal foods. None. Give vouchers towards gluten-free products to the cost comparable to products containing gluten. Not at all People should buy their own... N.B. Some content has been redacted (xxxxxxxxxx ) to preserve anonymity Page 12

13 It's hard enough for adults, but stopping gluten free food support for children would be devastating. All children should receive it. Knowing how hard work it is to keep a Coeliac child 100% Gluten Free and healthy, I believe that removing this essential assistance would result in Coeliac children eating gluten, without doubt. I don't think you should means test because frankly the cost of living means that there are many people who don't have enough to get through the month that would not qualify and would potentially be struggling to feed themselves or their child. This proposal would greatly impact my daughter's diet. We rely on the bread rolls. They are a staple item. Child support groups Gluten Free baking/cooking workshops Pressure on supermarkets to reduce pricing More information to restaurants about Coeliac Disease and the important of 100% GF preparation of food and the issue of contamination Allow greater choice of food products on prescription Get the suppliers to reduce the cost of the bread to the NHS. It is extremely challenging feeding a Coeliac child. With both parents working full time there is not the luxury of time to bake our own GF bread, even if we had the skills. Whilst supermarket GF breads exist, they are a) extremely expensive, b) minuscule, c) tasteless and d) go out of date quickly. Generally the bread is okay for toast, but not for sandwiches. As we work full time and the bread is only available at big supermarkets that we must drive to, we can only shop once a week and GF bread does not last long enough for that. Freezing GF bread turns it to cardboard. School dinners do not provide GF meals, so we are totally reliant on the supply of Juvela rolls for packed lunches. They are the only roll we have found that is palatable after half a day in a lunchbox. The GF food provision was radically slashed in 2014, which was hard enough for Coeliacs. There are other areas that should be considered. For example, I noted recently that people with thyroid conditions get a medical exemption certificate which give them free prescriptions for everything, not just thyroxin. Why is the CCG not tackling that unjust arrangement? Means tested Education and supported services to access suitable food. Especially to those who cannot afford the price People who are coeliac should be able to get staple foods or else there should be a serious look at the manufacturing of specific foods as they are so expensive and this is a life long decease. I'm afraid it might mean I cannot afford the diet I need for my health which will cost the Nhs more in the long term. Unsure Please don't agree this proposal The best treatment for Celiac's is diet, this is their form of medication and this should be supported to assist them with their health. N.B. Some content has been redacted (xxxxxxxxxx ) to preserve anonymity Page 13

14 It's very difficult (as with many things) to set limits to prescription gluten free products but I definitely think it should be available to all under 18's and set to only bread as a staple item. Even though being a coeliac can only be treated by eating gluten free products, I can accept having to pay for bread etc for myself but think unfair for my daughter to not have any form of allowance to help her. Her allowance has been dramatically cut in the last proposal so we now only receive 8 loaves of bread a month which is not enough! Because the condition is controllable by diet and only diet it gets brushed away as not as important as other conditions that require medicine. Keep present prescriptions These changes won't have any affect on our diets as I will ensure that we still follow a gluten free diet - we would be ill if not and would therefore cost more money! Only thing that would help is by bringing the cost down of all gluten free products! The whole system is unfair and again like anything to do with healthcare and welfare is affected by individuals that abuse the systems that are in place. Prescriptions costs local healthcare too much money so action needs to be taken and unfortunately the removal of gluten free products from prescription is the thing that has to be taken away! as I am coeliac and pension credit i would find hard to have to by my bread at some times over 3 pound a loaf. as a result I would be very ill indeed! I would revert back not eating products and become very malnurished with a very large bloated stomach. would have to have find a toilet every 10 to 15 miles so travelling would be very hard to say the lest. I would be very useful if all bread was made as a standard size loaf. if you two sandwiches you breakfast you will have used have a loaf so it would sense to use those that full loafs. as our area has reduced to only 8 units from 16 we can only get bread. all other thing we It would have a major impact as would have to buy. that takes about 30% of our shopping budget to lose it all would have to reduce my bread intake would be utter madness. 50% or even more as stated above to produce a full size would in the end save money as the bread would last 2 or 3 days instead of 1day this major problem if on a low income it is a case of saving money will it end up with stopping all drugs for those with heart problems cancer diabetes. there lives depend on have these drugs. gluten free products should be in the same group as above life would be very hard or impossible with out any of these drugs or products i would not be able to get the flour from any were else as i have been on this product for 40 years my body is used to it also it states that some of the shop products dose not contain the nutrients unable to obtain the i have used for 40 years educate the food manufacturers more so they can bring the prices down N.B. Some content has been redacted (xxxxxxxxxx ) to preserve anonymity Page 14

15 According to the current national guidelines. Make it harder to stick to it. Make it much more expensive. Make it even less palatable. (See comment below on quality.) Make accessing it even more of a struggle. (I already have to travel round several supermarkets at a distance to do g/f shopping rather than just shopping at one.) Coeliac disease is a serious condition, with major complications, if not treated and the only treatment is STRICT adherence to a gluten free diet. There are at least three reasons why removing even the basics - bread and flour (mix) - from prescription would it extremely difficult for some people to maintain their treatment: 1. AVAILABILITY Contrary to popular opinion the availability of quality g/f products is extremely limited. E.g. since hearing about this proposal I have kept a careful check on local shops and supermarkets and have found that frequently even simple things like loaves of white bread or white rolls are simply not there. 2. COST Without some help from prescriptions the cost of the treatment would it extremely difficult for some people. E.g. the cost of g/f bread in the supermarkets is, weight for weight, three or four times greater than ordinary bread. The price of 500g of Juvela White Mix is at both Boots and Sainsbury's pharmacy. 3. QUALITY The quality of products available on prescription is far superior to those at the supermarkets. E.g. Juvela and Glutafin mixes for home cooking/baking are greatly superior to those sold in the supermarkets. N.B. It should be noted that the cost to the NHS of treating conditions arising from poorly treated coeliac disease is considerable and may outweigh the relatively modest saving from this proposal ( 100,000). E.g. broken bones arising from osteoporosis, anaemia, bowel cancer, depression and Other people such as those with severe nut or dairy allergies have no help with the special food that they have to buy and all dairy free food is over priced and very expensive with a limited range and availability. due to the expense of gluten free foods available prescriptions allow a more affordable access to staple foods. If they cannot provide prescriptions then perhaps they could offer discounts on gluten free food or subsidise them I will probably not have any bread unless I can get it on sale or highly discounted access to gluten free baking courses or alternative flours so that we can our own Why not work with the major supermarket chains to create affordable gluten free ranges N.B. Some content has been redacted (xxxxxxxxxx ) to preserve anonymity Page 15

16 I am aware that other surgeries in Braintree give prescriptions for food other than flour but my surgery does not. My daughter was diagnosed when she was four and she is now 10. For the first couple of years we were able to have biscuits and pasta on prescription which obviously helped. People go on about being able to buy more products in the supermarkets but they are so expensive. This is not a life choice. My daughter is very ill if not fed gluten free food. I cannot understand why it would stop when she is young child. As previously stated my daughter is very ill if not given gluten free food and sometimes we struggle to cope with the diet Keep giving them food on prescription. Gluten free products are very expensive off the shelf. I have only had a prescription for my child once(she has been diagnosed for 1 year) and choose to purchase GF foods myself, I am fortunate enough to be able to afford to do so but for people on a more limited income this would be much harder. I believe GF prices should be reduced so that people can access in the same way as normal food. I don't think the NHS should have to pay hugely inflated prices for GF food. Income based, if they are on low income they should get help with it The removal of Free prescription gluten free food will result in poor patients having to pay for food that is essential for their Health. People do not choose to be gluten intolerant None Nil None Negotiate with GF suppliers to provide discount vouchers for GF food so that people can buy from supermarkets and it would cost the same as normal food. There are people with other severe dietary problems who receive no help at all. Dietary advice. Provide sites that show how to their own at low cost. N.B. Some content has been redacted (xxxxxxxxxx ) to preserve anonymity Page 16

17 As a student, on very little money as it is from the government, it is hard enough buying food to survive after paying off hall fee's and therefore having it on prescription would it more cost effective due to prescription certificates. The price of gluten-free food for a coeliac is incredibly high and as an athlete as well as a student I need the carbohydrates more, and they are simply too expensive to buy from the supermarkets. I am also faced with the issue of living in a small village far from town, with no car, I am unable to get very much gluten-free food as the local co-operative store stocks very limited supplies. Therefore having this prescription service would mean I can eat properly instead of having issues with what to eat. As a student, on very little money as it is from the government, it is hard enough buying food to survive after paying off hall fee's and therefore having it on prescription would it more cost effective due to prescription certificates. The price of gluten-free food for a coeliac is incredibly high and as an athlete as well as a student I need the carbohydrates more, and they are simply too expensive to buy from the supermarkets. I am also faced with the issue of living in a small village far from town, with no car, I am unable to get very much gluten-free food as the local co-operative store stocks very limited supplies. Therefore having this prescription service would mean I can eat properly instead of having issues with what to eat. This proposal will have a massive impact on my diet, as like I stated earlier it will be a lot harder to get basic food such as bread and pasta, due to the lack of food stocked in local stores. It will also create large financial issues as gluten-free food is just simply not affordable. This proposal will have a massive impact on my diet, as like I stated earlier it will be a lot harder to get basic food such as bread and pasta, due to the lack of food stocked in local stores. It will also create large financial issues as gluten-free food is just simply not affordable. More help for young people aged 18 and under who have been diagnosed, as for me after being diagnosed at the age of 6 it was hard to cope but also, having not long moved out and to a specialist university,i have to face issues such as people not understanding or seeing it to be something less that it is, for example its through a matter of choice and not compulsory. Such as what foods contain gluten and what foods don't as friends can find it hard to understand what it is I can and can't eat. More help for young people aged 18 and under who have been diagnosed, as for me after being diagnosed at the age of 6 it was hard to cope but also, having not long moved out and to a specialist university,i have to face issues such as people not understanding or seeing it to be something less that it is, for example its through a matter of choice and not compulsory. Such as what foods contain gluten and what foods don't as friends can find it hard to understand what it is I can and can't eat. Please keep the prescription service Please keep the prescription service N.B. Some content has been redacted (xxxxxxxxxx ) to preserve anonymity Page 17

18 As a student, on very little money as it is from the government, it is hard enough buying food to survive after paying off hall fee's and therefore having it on prescription would it more cost effective due to prescription certificates. The price of gluten-free food for a coeliac is incredibly high and as an athlete as well as a student I need the carbohydrates more, and they are simply too expensive to buy from the supermarkets. I am also faced with the issue of living in a small village far from town, with no car, I am unable to get very much gluten-free food as the local co-operative store stocks very limited supplies. Therefore having this prescription service would mean I can eat properly instead of having issues with what to eat. This proposal will have a massive impact on my diet, as like I stated earlier it will be a lot harder to get basic food such as bread and pasta, due to the lack of food stocked in local stores. It will also create large financial issues as gluten-free food is just simply not affordable. More help for young people aged 18 and under who have been diagnosed, as for me after being diagnosed at the age of xxxxxxxxx,i have to face issues such as people not understanding or seeing it to be something less that it is, for example its through a matter of choice and not compulsory. Such as what foods contain gluten and what foods don't as friends can find it hard to understand what it is I can and can't eat. Please keep the prescription service Gluten free food is very expensive, and for people on low incomes, or without disposable income, it would be hard for them to purchase gluten free foods. My Mum had coeliac disease, and she did not work, as she had Alzheimer's. I do not know how she would have paid for her food, if the prescriptions were stopped. It is wrong. Bought from supplier cheaper Prescription should be for essentials only - bread, flour and pasta N/A Wouldnt be able to afford to buy bread as on tax credits It will probably cost more in the supermarkets once they realise they hold a monopoly on specialist dietary foods I can't see anything, as they NEED gluten free foods, but if they cannot afford them, I don't know what other way they could be helped. Suppliers should sell cheaper or nhs go to cheaper reputable suppliers. Greater awareness for catering - how we miss fish and chips... Restaurant personnel need to understand cross contamination better N.B. Some content has been redacted (xxxxxxxxxx ) to preserve anonymity Page 18

19 Having this lifelong disease necessitates me having a special diet, and being that this is for health the food is considerably more expensive and in some cases harder to get. The prescription food takes the burden of the extra cost out of what is a difficult disease to deal with. I can no longer have the cheaper foods that are available.. Takeaway food and restaurant food is something in the majority of cases I am unable to have. Why penalise and cuts to an already difficult situation that this disease and the associated medical problems that go along with it, this isnt my only medical issue. Having the support of prescription food has made life a little easier financially, i think is wrong to cancel prescription food which is after all necessary for the health of people like me. Coeliac Disease is a life threatening illness, and whilst GF products are becoming freely available the size of the products are a lot smaller and at almost twice the price of non GF products it s it difficult for those of us who not so wealthy. I would certainly entertain paying a contribution towards continuing to obtain items on prescription. Although most supermarkets now sell a small range of gluten-free goods the prices are very expensive compared to nongluten-free products. When living on a moderate income (pension) it becomes a burden to have to pay exhorbitant prices for food you have no choice but to buy. Two of my children have coeliac disease bread and pasta are staple foods that should be available on perscription as it helps with this very expensive diet. It would have a financial impact I am a student. I also feel that it is through no fault of my own that I have these health issues. I should be able to get support for my health issues though my doctor's surgery and hospital, but this is disappearing fast. What is next, my medication, which i get free at the moment. It is totally unfair that these cuts should be made to people who have life threatening conditions, which are hard enough to live with. Probably cut down on what I eat and loose weight beyond the recommended level. There needs to be more information out there. I am xxxxxxxxxxxxxx I am too young to have many of these health issues, but because of other cuts in the NHS it seems more beneficial for GPs to not refer people to hospitals for these tests. As above Bring back prescriptions for glutenfree for staple foods eg. bread. Stop making cuts to disabled and fragile people who through no fault of their own are in a situation not of their making. Why not bulk buy saving costs, shelf life on flour and bread is good. Add breakfast cereal to products that are available on prescription. We read of people in some parts of the country getting foods such as pizzas etc. on prescription yet I cannot get any help as my prescriptions were phased outmonths ago. Surely something like this should apply to coeliacs nationwise. N.B. Some content has been redacted (xxxxxxxxxx ) to preserve anonymity Page 19