Gluten Free Foods Frequently Asked Questions Following on from a recently held patient focus group, NHS Vale of York Clinical Commissioning Group (CCG) made a commitment to start to answer some of the questions that were posed at the meeting. This list can be added to at any time so if you have any further queries please feel free to contact us by email [email protected] or phone 01904 555870.

1. Will the CCG be undertaking a review of the policy and who will you be consulting with? Can you give some timescales on when to expect the results of the review? 2. What products are now available on prescription, including the recommended quantities? How up to date is this? 3. What is happening in other CCGs in the country? 4. Could the CCG explain the process that was undertaken last year for informing practices and patients of the new policy? 5. What training do healthcare professionals (including GPs) and other professionals such as carers and chefs have in prescribing and preparing gluten free foods? 6. Will the CCG think about holding any sessions with a chef to help us understand how to get best use out of our flour? 7. Could you please let me know why there are a cohort of patients who get prescriptions free and why Coeliac patients do not? 8. Will you be considering working with manufacturers and suppliers (including supermarkets) of gluten free foods to address any issues on the products ranges available and the supply and delivery of such products? 9. It feels like the CCG is imposing and dictating what we can eat as part of our diet rather than allowing us to make a personal choice! Can you please give your views on this? 10. Why can’t we use the recommended units to obtain any gluten free foods we want?

Q1: Will the CCG be undertaking a review of the policy and who will you be consulting with? Can you give some timescales on when to expect the results of the review? A: Yes the CCG is undertaking a 6 month review following the new policy coming into place in September 2014. We are collating views and opinions from various sources:    

A focus group for patients was held on the 10th March 2015 An online questionnaire has been made available and is still collecting views until the end of March 2015 We are carrying out an audit of GP practices to understand if they have informed all of their affected patients We are consulting the views and opinions on the new policy with the senior consultant gastroenterologist and senior dietician at the hospital.

Details of the review and any recommendations following the review will be considered by the CCG’s senior management team early May 2015.

Q2: What products are now available on prescription, including the recommended quantities? How up to date is this? A: During the recent focus group event we were told that the information of what is now available on prescription and the number of recommended units was not clear to patients and healthcare professionals. So we have now revisited the information and have now developed a clearer and more concise leaflet. This can be found at http://www.valeofyorkccg.nhs.uk/rss/data/uploads/prescribing/policies/gf-prescribableproducts-list-voy-ccg-2015.pdf and will be communicated to all GP practices in the Vale of York for their information.

Q3: What is happening in other CCGs in the country? A: The following CCGs restrict prescribing to a reduced list of fresh and long-life bread, flour and bread mixes, allowing only eight units, per person, per month, across all age ranges:       

Brighton & Hove CCG / High Weald Lewes & Havens CCG (joint formulary) Eastbourne, Halisham & Seaford CCG / Hastings & Rother CCG (joint formulary) East Surrey CCG Guilford & Waverley CCG North West Surrey CCG Surrey Downs CCG Surrey Heath CCG

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Oxfordshire CCG - implemented from January 2014, ensuring that patients with coeliac disease can be prescribed 8 units of gluten free food per month. This includes flour (including bread mixes) and bread including fresh bread. The 8 units can be made up of flour or bread depending on patient preference.

The following CCGs have other prescription restrictions:       

Canterbury & Coastal Kent CCG (not prescribing pasta, crisp bread and crackers) Ealing CCG (not prescribing breakfast cereals and oats) East Staffordshire CCG (not prescribing breakfast cereals and oats) Luton CCG (not prescribing breakfast cereals and oats) South East Staffordshire & Seisdon Peninsular CCG (not prescribing breakfast cereals and oats) West Suffolk CCG (not prescribing crackers, crisp breads, breakfast cereals and oats) Shropshire CCG (not prescribing crackers, crisp breads, breakfast cereals and oats)

Q4: Could the CCG explain the process that was undertaken last year for informing practices and patients of the new policy? Following an extensive review of the Coeliac Policy including gluten free foods prescribing in July 2014, the CCG decided to implement some changes to the policy. In August 2014, all GP practices were informed of the decision and provided with template letters to communicate changes to their patients. The new policy and prescribing guidance was then implemented from September 2014. As with all policy changes, a 6 month review was scheduled to take place in March in 2015. Q5: What training do healthcare professionals (including GPs) and other professionals such as carers and chefs have in prescribing and preparing gluten free foods? As part of the standard training for general practice, GPs are trained to recognise the signs and symptoms of Coeliac Disease. If they suspect a patient has coeliac disease they would firstly perform a blood test and then refer onwards to specialist gastroenterologists to confirm diagnosis. Dieticians are qualified to give advice and education to Coeliac patients. As to the prescribing guidelines of GFF, the CCG has given practices information on what bread and flour is now available to prescribe and the number of recommended units per patient allowed. This has recently been reformatted and can be found on the website: http://www.valeofyorkccg.nhs.uk/rss/data/uploads/prescribing/policies/gf-prescribableproducts-list-voy-ccg-2015.pdf As regards to the training for food handlers, whilst there is no statutory training requirement for chefs or other food handling staff there are a number of courses available.

The Food Standards Agency states that ‘food business operators are required by law, to ensure that food handlers receive appropriate supervision and instruction/training in food hygiene in line with their work activity and should enable them to handle food safely’. In addition Coeliac UK run a gluten-free accreditation scheme which enables accredited establishments to be clearly identified by the Coeliac UK GF trademarked symbol - more information on this is available here https://www.coeliac.org.uk/gluten-free-diet-andlifestyle/eating-out/ There is however clear legislation regarding labelling. Under the Food Information Regulations caterers must provide allergen information for all meals served and this law applies to both packaged foods and foods sold in catering establishments as well as to meals served in hospitals, schools, workplaces etc. Q6: Will the CCG think about holding any sessions with a chef to help us understand how to get best use out of our flour? If you think you would benefit from a session with a local chef, we would certainly investigate the possibility. In order to gauge interest, we would ask if you could please let us know via [email protected] or call 01904 555870. Q7: Could you please let me know why there are a cohort of patients who get prescriptions free and why Coeliac patients do not? A: Eligibility for fully “taxpayer funded” prescriptions with no prescription charge is determined by central government based upon consultation, evidence and the political policy direction of the party in government. This is not an area over which local CCGs have control.

Q8: Will you be considering working with manufacturers and suppliers (including supermarkets) of gluten free foods to address any issues on the products ranges available and the supply and delivery of such products? A: As part of the review, the CCG will consider all options. Q9: It feels like the CCG is imposing and dictating what we can eat as part of our diet rather than allowing us to make a personal choice! Can you please give your views on this? A: As a NHS organisation we advocate people to follow a healthy diet and fully support the various national initiatives such as NHS Choices Eat Well Plans (http://www.nhs.uk/livewell/healthy-eating/Pages/Healthyeating.aspx) and Change 4 Life (http://www.nhs.uk/change4life/pages/healthy-eating-tips.aspx)

If you have any concerns or would benefit from some advice then we recommend you look at the above websites or speak to your GP.

Q10: Why can’t we use the recommended units to obtain any gluten free foods we want? A: As part of the review, the CCG will consider all options.