Gluten free product prescribing in the Vale of York

Transcription

1 Gluten free product prescribing in the Vale of York Event date Wednesday 29 July 2015 Venue West Offices, Station Rise, York Event purpose To gather the views of local coeliac patients on the option for a supermarket voucher scheme Event details Participants were asked the following questions: 1. What GF products do you regularly buy from the supermarket and are there gaps in what is available? 2. How much do you spend each month supplementing your diet? 3. What do you think would be a reasonable monthly amount to help subsidise your diet? 4. Should there be restrictions on what you can buy with a voucher? 5. Would you want a choice of supermarkets and health food shops The views of the event participants are below. 1. What GF products do you regularly buy from the supermarket and are there gaps in what is available? Eat Natural Cereal and bars Doves Farm SR/Plain Flour Oats (4x more expensive) Scones Biscuits (can be too sweet) Bagels Crackers DS Crispbreads DS biscuits Snack a Jacks (Rice Cakes) Xantham Gum GF Fish Fingers Pasta Pizza & Pizza bases Spaghetti Lasagne Flax Seed Cake (can be too sweet) Porridge Genius and Glutafin bread not available on RX Wraps Fish Cakes & M&S Fish Fingers Oat Cakes Cereal Frozen items (key to supermarket) Are there any gaps in what is available? Brown Rice Fibre pasta Juvela/Glutifin flour mixes Not many supermarket breads have fat and sugar Snack Bars (Eat Natural 9 bars) Flour rather than on prescription Juvela/Glutifin/ Shar bread cakes Teff Flour (millet) and Tapioca Flour

2 Barkat crackers ( 7 on NHS) Sweet biscuits 2 How much do you spend each month supplementing your diet? Very hard to measure Can we make a measurement regular vs. gluten free Only buy when you can afford it, sometimes have to go without per month, extra for a child Under or more, plus 10 prescriptions week on bread (1 loaf per week) 40 (14 units but not necessarily used) 3 What do you think would be a reasonable monthly amount to help subsidise your diet What do we pay now for full quota of bread & flour? Difference between GF and non GF staple foods; mid-range of this allows choice Approx Should there be restrictions on what you can buy with a voucher? Restrict to the following staple foods Oats Bread Flour including mixes Pasta Spaghetti Pizza Bases Breakfast Cereal If people choose to buy biscuits and cakes with the voucher they must realise and take responsibility to pay for healthier foods 5 Would you want choice of supermarkets and health food shops? Yes to ensure access for all. Include local pharmacies too Sainsbury s Waitrose Co-op Lidl Health Food Stores Tullivers Tesco Marks and Spencer Aldi Morrison s Holland & Barrett

3 The following are other comments and views of participants and have been divided into the following themes: Voucher scheme Choice Flour mixes Clinicians, pharmacies and prescribing Costs General comments and suggestions Voucher scheme Juvela and Glutifin flour mix can only be acquired from a pharmacy. As many of us make our own bread at home to avoid contamination the voucher scheme should also include pharmacies Want loaded card to use in community pharmacy and supermarket even if less value for money from community pharmacy products Would need to include all the supermarkets i.e. Sainsbury s, Morrison s, Tesco Stock in some supermarkets is currently limited and range is poor Supermarkets can only gain Consider access to the bigger supermarkets for people living in rural areas, the elderly and people with disabilities Supermarket brands have lower sugar/fat than prescription Flour from supermarkets rather than on prescription Do the CCG have the clout to get Juvela in supermarket? Bread from supermarkets often has poor shelf life Supermarkets do not always stock good bread Supermarkets in Selby have very limited choice of GFF foods. It was bad enough when we were stopped from having Juvela Mix on prescription but does this mean that with a voucher system we would not be able to have Juvela bread also? We all have different tastes; some people like one type of bread, while others cannot stand it. Please allow us as wide a choice as possible, and keep the way open for us to use our local pharmacy, unless the supermarkets will be able to access products that they currently don't stock A voucher system would give patients a wider choice but it should also be used in pharmacies as supermarkets do not stock the required products. Also it s difficult getting to a supermarket Concerned about how a voucher scheme would be implemented and administered and the cost of this to the CCG, compared to other options The availability of products in supermarkets can be variable. A duel system, whereby people would be able to use vouchers at a pharmacy as well as supermarkets, would overcome this It provides the choice clued up about nutrition but consider choice to patient Do we load the card monthly? If we haven t spent all the money do we lose it or does it get carried over or come back to the CCG? No everyone it able to shop online

4 I am very concerned that you are considering a voucher scheme that is limited to supermarket products. My preferred bread for sandwiches is Glutafin Fresh brown bread and I make my own very nutritious bread from Teff flour for toast and neither of these are available in a supermarket Fibre pasta is not available from supermarkets I feel that I would be more restricted than at present with a voucher scheme as I would no longer be able to even access my bread and flour If people choose to buy biscuits and cakes with the voucher they must realise and take responsibility to pay for healthier foods Can we use health food stores? Yes want choice The voucher value could be exchangeable for all items on a 'prescribable' product list. Ideally the vouchers should be universally accepted including in small stores that stock listed items The vouchers could be issued by chemists in the same way prescriptions are Choice Prescription bread too restrictive; have to order 8 loaves at a time, 2 weeks in advance Need to be able to choose the bread we want Seeded bread only available from supermarkets, not on prescription I never use my full allowance of 14 points, I cannot eat that amount of bread Would it be better to reduce the points slightly but allow us a wider choice of suppliers and products? Lack of choice in current system Reduce units but give more choice reinstate mixes Prescribe food of a suitable quality, choice and quantity to avoid waste can t use 18 units on bread Flour mixes I do so wish that the CCG could re-introduce bread mixes as many other CCG's have across the country in line with the revised guidelines I can bake 2 loaves in my Morphy Richards bread maker from a 500g packet of Doves Mix and the loaves are superb and well above anything that you can buy in a Supermarket The flours now available simply don t work baked goods do not hold together but just crumble into pieces and do not rise Providing all these units for bread and flour on prescription is actually costing more than providing mixes Can mixes go back on prescription while the voucher scheme is worked up? Continue with existing scheme but reinstate mixes Restriction on mixes should be lifted as per PresQipp The flours available are poor substitutes for home baking Clinicians, pharmacies and prescribing Pharmacies have high delivery charges Won t be fresh

5 Another link in the chain Pharmacies could have supply issues products out of stock Are pharmacies ready to offer this service? Pharmacies will have extra surcharge for items that are not regular stock items within their current warehouse provision Pharmacy supplied GFF are trusted, made within a safe environment Remove GPs from the prescription process Best option is pharmacy led scheme over supermarkets Obtaining GF items through the local pharmacy is guaranteed and many will offer a delivery service Cost Bread mixes can only be purchased through pharmacies and since the CCG disallowed them, the price has shot up I am concerned about how a voucher scheme would be implemented and administered and the cost of this to the CCG, compared to other options To make the use of vouchers viable through a pharmacy the cost of GF products, including delivery costs, would need to be challenged with suppliers If the CCG decides to stay with the current system, negotiation on the cost of supplied items may also result in significant savings 400g loaf costs 3 times more than gluten containing 800g loaf Gluten Free manufacturers need to reduce their costs Negotiate commercial contracts for Gluten Free products General comments and suggestions There is a lot of waste with the current system due to bread products that do not keep for more than a couple of days or have to be frozen, and useless flour products The restrictions mean people have more bread than they need which ends up being wasted as they cannot use units for anything else I rely on prescription as means of subsidising GF diet but find restrictions have created financial pressures Would like to see restrictions lifted particularly oats and porridge Have we contacted Juvela regarding stocking products? Dedicated bakers for coeliacs are more trusted Consider children differently? Research Jersey and Isle of Wight scheme Check good practice at other CCGs Strategy what is CCG s view of schemes other than voucher scheme? Review maximum units versus choice Children lack of diagnosis Don t forget rural issue and people without I.T. access including disabled and elderly Should be able to use on non-specialist gluten free products How many coeliacs are there in the Vale of York? A lot of people don t get anything on prescription do we know the numbers who don t? Would use more units if able to have pizza bases, pasta, mixes Make it happen quickly! The majority of small local stores do not stock GF products The restrictions disproportionately affect families on low income

6 Have Juvela felt the impact of these changes? Negotiate with them Want to continue to be part of the decision making process around GFF. Where our feedback is not acted on, we want to understand the reason behind this. Feel not fully informed of the decision, confused and some people renewed Pre- Payment Certificates Feel excluded from taking part in a normal social life and full range of diet Gastro clinic at York excellent