Gluten-free
Frequently Asked Questions
Why have you made this decision?
NHS Gloucestershire Clinical Commissioning Group (CCG), as commissioner of most NHS services and treatments in the county, has a duty to plan and prioritise treatments and services fairly, using the public money available to achieve the maximum health benefit for the people of Gloucestershire.
There are significant challenges facing the NHS, including a growing population with more complex needs, increasing demand for services, rising drug costs and new medical technology. As such, there are considerable calls on each ‘Gloucestershire pound’, and each pound can only be spent once.
It is therefore vital that commissioners make decisions based on careful examination of the value (costs vs. medical benefits) of each spending choice they make. This may involve doing less of some things to allow funds to be spent on areas we feel could provide greater benefit to our residents.
Prescriptions are a particularly important area of consideration because we spend so much money on them. Costs have been increasing steadily, and when important new treatments are approved by the National Institute for Health and Care Excellence (NICE), these are often options we need to make available for people in Gloucestershire.
NHS Gloucestershire CCG’s spend on gluten-free prescriptions for coeliac disease was £379,000 in the last financial year; this is money that we were not able to spend in other areas. Each prescription brings unavoidable costs to the NHS because there is little or no potential for competition or shopping around, which individual consumers can do. In effect, the NHS has to pay a premium price for each product.
Gluten-free prescribing started more than 30 years ago when such products were not easily available to buy in shops, so the NHS offered the prescription service to help coeliac patients better manage their diet. Due to changing diets and lifestyle choices, there is now a much wider variety of naturally gluten-free foods and gluten-free alternative products available in shops and supermarkets.
Decisions to stop areas of funding are always difficult. However, they are vital if we are to pay for valuable new treatments. We make such decisions on the basis of fairness, reasonableness and good sense.
A growing number of other CCGs have already taken the decision to stop offering gluten-free items on prescription and after careful consideration, the Governing Body of NHS Gloucestershire CCG has come to the same decision. We have asked GPs to start this from 30 November 2016.
Couldn’t the money be saved elsewhere?
The CCG has considered several areas of prescribing, including gluten-free prescribing, which we feel can be managed differently and better. This information sheet will only focus on gluten-free products.
What are you doing to support people who are having their gluten-free prescriptions stopped?
We are working with Coeliac UK to understand better how this decision may affect patients. We understand that some people who have been managing their coeliac disease in a certain way for any period of time may be worried about how this change will affect them. We hope that this Frequently Asked Questions sheet will help assuage any concerns, and enable patients to feel confident in managing their gluten-free diet.
We have also produced a Resource Pack with lots of information to help patients find alternative ways of following a gluten-free diet. This has been developed with the help of a dietitian who fully understands the importance of continuing to follow a gluten-free diet. Your GP can refer you to the dietitian for further support if you wish.
What if I have bought a Pre-Payment Certificate?
If you have bought a Pre-Payment Certificate to help with the costs of your gluten-free items, you can obtain a refund for any months remaining before it expires. You need to do this by completing and returning the Prescription Pre-Payment Certificate (PPC) Refund Application Form enclosed in your Resource Pack by 1 March 2017.
If you are also receiving other prescriptions, you may wish to continue to use your Pre-Payment Certificate.
Where can I get the gluten-free products from now? / I can’t get to supermarkets and bigger shops
Most supermarkets and health food shops now stock both their own range of gluten-free alternative foods and other branded ranges, including some of those you may have been getting on prescription. Some smaller convenience stores also stock gluten-free alternative products. It is always worthwhile telephoning your local supermarket or shop to make sure that they have the products available before you visit, as stock levels will change from time to time.
If you find that your local supermarket or shop does not stock what you need, it may be worthwhile talking to them about gluten-free alternative foods and asking if they could start stocking the products for you.
You may also continue to use your pharmacy to order gluten-free foods and pay them directly, although this is a more expensive option.
Many gluten-free manufacturers offer a direct home delivery service. Details of this can be found in your Resource Pack. Large supermarkets and health food shops are also able to offer home delivery through their websites.
I can’t afford to buy gluten-free products
We appreciate that the price of gluten-free alternative foods are often more expensive than standard products containing gluten. However the price difference is quite variable depending on the product type.
Many staple foods such as rice, potatoes, corn, lentils, meat, fish, eggs, fruits and vegetables are naturally gluten-free; these are widely available and can be used to ensure a nutritious gluten-free diet. In your Resource Pack there is more information about how to follow a gluten-free diet on a budget.
We are asking GPs to use their clinical judgement in implementing this as we understand that there will be certain groups of patients whom this may adversely affect. Please discuss this with your GP if you have questions regarding this. If your GP feels that you are eligible for continued gluten-free products on prescription, this will be limited to bread loaves and flour/bread mixes only.
Where can I get help with following a gluten-free diet?
If you are now under the care of your GP and you have concerns about following a gluten-free diet, please speak to your GP or practice nurse. They can contact our Prescribing Support Dietitian to help you further.
National Institute for Health and Care Excellence (NICE) guidelines mean that you should have an Annual Review with your GP to discuss your diet and general health, including having blood tests. If you are still under review by the dietitians and gastroenterologists at the hospital, you may also get support there.
Coeliac UK, the national charity for people with coeliac disease, provides excellent support and advice on following a gluten-free diet. If you are not an active member of Coeliac UK we would strongly recommend you join / renew your membership. They have a very wide range of materials and support to help you effectively and affordably manage a gluten-free diet, including a Food and Drink Directory which lists thousands of gluten-free products available in shops. You will then automatically become a member of the Gloucestershire Group – a source of expert local support and information. Contact the Coeliac Society on 0333 332 2033 or at www.coeliac.org.uk.
What if I make a mistake and eat the wrong food?
If you have been medically diagnosed as having coeliac disease, it is essential to follow a gluten-free diet to manage your condition and support your long term health. Some people with coeliac disease are more sensitive to gluten than others, so it is difficult to say how people will be affected by eating gluten. Some people will have no signs and others may experience more severe symptoms after consuming just a very small amount.
However, even if you don’t get any symptoms after eating gluten, it is still important to strictly avoid it as it may cause your intestine to become damaged, even without provoking any symptoms. Please therefore take time to read through this information, look at your diet and which foods are gluten-free so that you can continue to follow a gluten-free diet.
What about children, pregnant and breastfeeding people?
It is particularly important that growing children and pregnant and breastfeeding women continue to follow a gluten-free diet. The information found in the Resource Pack can help you with this.
I also have diabetes – will this affect my blood glucose control?
If you continue to use the same gluten-free products as before but not on prescription, your blood glucose control should be unaffected. However, if you change your diet in any way, this may affect your blood glucose control.
If you are struggling to find suitable gluten-free options to maintain good blood glucose control you should seek advice from the healthcare professional that helps you manage your diabetes. There is more information about managing coeliac disease and diabetes in your Resource Pack.
Who can I talk to if I still have concerns?
If your concerns relate to your health then please contact your GP or Practice Nurse.
If you would like to contact the CCG about this decision, please write to:
The Accountable Officer
Gloucestershire CCG
Sanger House
5220 Valiant Court
Gloucester Business Park
Brockworth
Gloucester
GL3 4FE
Email:
If you still have questions about following a gluten-free diet, please read through the information provided in the Resource Pack.
You can also contact your GP, visit the Coeliac UK website at www.coeliac.org.uk or call their helpline on 0333 332 2033, or contact the Coeliac UK Local Group by emailing