Gluten free food on prescription - outcome of the 2017 consultation

Gluten free food on prescription - outcome of the 2017 consultation

In October and November 2017 the CCG had a period of consultation to seek views on a proposal to cease all prescribing of gluten free foods, and replace with the visa top-up card scheme, which would be made available only to the most vulnerable people in our community who are least able to afford to purchase gluten free foods (patients on certain means-tested benefits). 

Below is some information  about the outcome of the consultation, and answers to some questions which were raised during the consultation itself.  We hope that the information helps to explain what has happened so far and the CCG’s position following the consultation. 

Please note if you have any further comments or queries, or you require the information in an alternative format you can contact the CCG directly, either using the phone number 01904 555870, or email address valeofyork.contactus@nhs.net.

Click on the links below to find out more information about the consultation and frequently asked questions:

Documents

What happened during the consultation in 2017?

The consultation period allowed the CCG to gather feedback from a range of stakeholders, particularly focusing on the group of people who would be most affected by the proposals: those with coeliac disease and those caring for someone with coeliac disease. 

The online survey showed that 55.29% of respondents disagreed, or strongly disagreed, with the proposals; qualitative feedback from respondents who disagreed with the proposals highlighted concerns regarding the policy in relation to the NHS Constitution, and whether using means-tested benefits as an eligibility criteria would be effective in identifying the most vulnerable patients. 

In February 2018, following its consultation on the availability of gluten-free foods on NHS prescription, the Department of Health and Social Care (DHSC) advised that gluten-free prescribing should be restricted to bread and mixes only.

The CCG has given very careful consideration to the feedback from the consultation and all the information now available, which is why the outcome of the consultation has not been reached and communicated sooner.  All things considered, the CCG has decided to adopt the position recommended by the DHSC, therefore gluten free bread and mixes will be available on prescription for all patients with a confirmed diagnosis of Coeliac Disease. 

You can read the summary document from the GFF survey by clicking here.

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What will happen with the visa top-up card pilot?

The difficult decision has been taken not to continue the pilot of the gluten free top up card. When the pilot was evaluated it was identified that more than one third (35%) of the cards appeared not to be in regular use. Due to disappointing engagement with the pilot and the significant administrative burden to the CCG associated with processing applications for, and loading the top-up cards, the decision was taken to bring the pilot to a close.   The CCG understands that this decision will be disappointing to some of the pilot participants.  Further information will be provided directly to participants of the pilot regarding timescales and the process for reverting to receiving gluten free bread and mixes on prescription

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Frequently asked questions (FAQs) raised during the consultation

Gluten free foods need to be more widely available and at a more affordable price – can the NHS use its buying power to influence the manufacturers?

What are the other [wider] proposals the CCG is considering?

We see so much waste elsewhere with medicines – why is prescribing of gluten free foods such a focus?

Why aren’t the CCG following NICE guidance?

I read that some patients who don’t have a formal diagnosis of CD can still get gluten free food on prescription – is this true?

Is there a CD specialist nurse at York Teaching Hospitals Trust?

 

Gluten free foods need to be more widely available and at a more affordable price – can the NHS use its buying power to influence the manufacturers?

The CCG acknowledges there is a cost difference between gluten free foods and their gluten-containing equivalents; this was taken into consideration when the making the decision that the current policy of prescribing bread and flour should not be changed.  Unfortunately, it is not within the CCG’s gift to influence commercial manufacturer and retailer prices of gluten free foods. 

It is important to note that the cost of gluten free foods to the NHS (taking into account dispensing fees) is far greater than the cost of gluten free foods bought by individual consumers in a supermarket.  For example, a 550g Tesco Free From White Sliced loaf is £2.10, whereas 500g loaves available on prescription range from £3-5 and also incur dispensing fees.  The CCG wants to emphasise the message that this is our NHS, and we need to take care of it, together.  The CCG is asking that patients who receive gluten free foods on prescription think carefully about what they order, only ask for what they need, and only rely on NHS gluten free foods if absolutely necessary. 

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What are the other [wider] proposals the CCG is considering?

The CCG is continuously reviewing the services and treatments that it commissions to ensure that they are evidence based, provide quality care and patient safety, and represent good value.  The CCG is working closely with primary and secondary care partners, as well as other local CCGs, to reduce the demand on our NHS system. A good example is the Prevention and Better Health strategy, where body mass index (BMI) and smoking thresholds are used to optimise outcomes from elective surgery.  In addition to optimising outcome from elective surgery, the strategy focuses efforts on prevention, self-care, and shared decision-making to support a shift in the way health care resources are valued, and to empower patients in the Vale of York to become more active participants in shaping their health outcomes.

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We see so much waste elsewhere with medicines – why is prescribing of gluten free foods such a focus?

The medicines management team at the CCG are continuously striving to improve efficiencies in prescribing and the associated costs.  Gluten free food prescribing is just one of many areas under review, and a number of other initiatives are already underway.  A good example is the ‘Our NHS, let’s take care of it!’ campaign which aims to address wasted prescription medicine costs.  The campaign asks patients who receive repeat prescriptions to think about what they order and to only ask for what they need, and aims to raise awareness of the cost and pressure waste medicine has on the local health economy in order to help the local community to make better choices. 

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Why aren’t the CCG following NICE guidance?

https://www.nice.org.uk/guidance/qs134/chapter/Quality-statement-4-Advice-about-a-gluten-free-diet

In this case the services commissioned by the CCG are in line with NICE guidance; it should be noted however that it is not obligatory for the CCG to follow NICE guidance. 

NICE guidance states that “a gluten-free diet is the main treatment for coeliac disease. If people with coeliac disease do not follow a gluten-free diet they may experience continuing ill health and be at risk of serious long-term complications”; the CCG supports this advice and would encourage patients with Coeliac Disease to adhere to a gluten free diet. 

With regards to the commissioner’s responsibility NICE suggests that “people newly diagnosed with coeliac disease discuss how to follow a gluten‑free diet with a healthcare professional with specialist knowledge of coeliac disease, such as a dietitian, and that services have sufficient capacity to meet demand”; the CCG commissions services in line with this recommendation. 

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I read that some patients who don’t have a formal diagnosis of CD can still get gluten free food on prescription – is this true?

In October 2014, GP practices were asked to undertake a review of all patients registered with coeliac disease who receive gluten free foods on prescription to ensure they have been diagnosed correctly with a biopsy as recommended by NICE (for children a biopsy may not be necessary in every case); it continues to be the CCG’s policy that gluten free foods should only be prescribed where there is a confirmed diagnosis. 

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Is there a CD specialist nurse at York Teaching Hospitals Trust?

There is no Coeliac Specialist Nurse at York Hospital but there is a team of other specialists who care for patients with Coeliac Disease; newly diagnosed patients with coeliac disease have input from a Gastroenterology Consultant and Gastroenterology Specialist Dietitian until their disease is deemed stable and then they are discharged back to their GP (this may be over a few years). Once patients are discharged back to their GP, the GP is provided with advice about which bloods should be checked annually and to consider referring the patient to the dietitians for a review of their gluten free diet, if appropriate.

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