Making the Case for Gluten Free
The BDA wants to support our members to make the case for the ongoing provision of Gluten Free products by the NHS
Clinical Commissioning Groups (CCGs) across the UK are under huge pressure to save money. A significant number have made changes to the way they prescribe Gluten Free (GF) foods, or in some cases removed them all together, and more CCGs join the list of those removing the products on a regular basis.
In March 2017, NHS England announced plans to review and issue guidance on 'Low Value Prescription Items', including gluten free foods. The consultation was launched on 31st March 2017 and can be found here. The BDA's response, submitted in June 2017, can be found here. We expect the government to make their final decision in the autumn.
The BDA believes that removing gluten free from prescription completely is a mistake. Not only do they risk impacting disproportionately upon the poorest and most vulnerable patients, they may increase costs in the long term. Those with coeliac disease who do not maintain a strict gluten free diet risk complications and nutritional deficiency, leading to increased demands upon primary and secondary care.
The NICE Quality Standard on Coeliac Disease states that;
"Gluten-free products are more expensive and are usually only available from larger retailers, making access more difficult for people on low incomes or with limited mobility. As coeliac disease can affect more than one member of a family it can also be an additional burden on the family budget. To address this, healthcare professionals should help people who may need support to find suitable gluten-free food products on prescription to enable them to maintain a gluten-free diet."
We agree that the current means of prescribing and managing the use of gluten free can be inefficient and does not always provide the best outcome for patients. However, we believe that there are better models that could be implemented, that place dietitians at the heart of the process. We beleive Coeliac patients should have access to a regular - at least annual - review with a dietitian to ensure they are able to maintain a gluten free diet.
Where such models have already been implemented they have greatly increased the efficiency and effectiveness of prescribing by reducing wastage and improving nutritional care.
What we need members to do to help
We are working with colleagues in other organisations to identify when CCGs bring forward plans to change or remove prescribing of GF products. However, we need your help to ensure we identify these as soon as possible, so please get in touch if you become aware of any such proposals.
Once we’ve identified the proposals, we need you to make the case for GF prescribing by taking a full part in any consultation process. This will involve not only suggesting alternatives but rallying other local organisations and groups to support your case.
We would also like you to consider contacting your local MP to voice your concerns about the NHS England consultation and the possible decision to remove gluten free foods from prescription across England. We have advice on influencing MPs and other politicians here.
What the BDA will do to support you
The BDA can support you with guidance on how to respond to the consultation, who you need to speak to, and who else to get on board to support your case. Where we become aware of a consultation that is taking place, we will contact local dietitians to let them know. There is more information available on responding to consultations on our Volunteers Hub.
If needed, we can help connect you to partners in your local area that are also making the case for GF, including Coeliac UK.
We are also able to contribute directly by writing to CCGs setting out our case as one of the UKs leading sources of nutritional and dietetic expertise. However, we want you to lead at a local level, so will only intervene directly where this is agreed with our members in that area.
Tools and further information
- Read our position statement on Gluten Free Food on Prescription, which outlines the BDA’s concerns, and the evidence of the impact upon patients with Coeliac Disease.
- A model letter (member only) that the BDA Chairman can send to your local CCG to support your response if requested.
Case studies and quality standards:
- Have a look at the NICE Quality Standard for Coeliac Disease which calls for the provision of advice and regular reviews for Coeliac Patients with a dietitian or GP.
- Look at a case study from Dietitians at Bedford Hospital NHS Trust (member only) which shows some of the key arguments that they made to Bedfordshire CCG when they proposed the removal of Gluten Free from prescription.
- Take a look at the guidance issued by Doncaster CCG for the prescribing of Gluten Free, which was created and is regularly reviewed in conjunction with local dietitians.
- Read a case study from the Vale of York (member only), where dietitians have been involved in the implementation of a voucher scheme for Coeliac patients. This is not the preferred BDA's model but may be of interest to members.
- Read about the Scottish Gluten Free Food Service, which is a pharmacy-led model used throughout Scotland. This includes an annual health check by a trained pharmacist with referral to a dietitian or other specialist as required.
- Kevan Jones MP, Chair of the Coeliac All Party Parliamentary Group, successfully secured a Westminster Hall debate on this topic in November 2016.
- Mr Jones has also tabled an Early Day Motion opposing NHS England plan's to remove all gluten free from prescription in the House of Commons. You can write to your MP to urge them to sign the EDM and explain why gluten free should be kept on prescription. We have advice on influencing MPs and other politicians here.
- Read Coeliac UK's response to the NHS England Consultation here. Coelaic UK also met with Department of Health in June 2017. You can read about that meeting here.
- Coeliac UK has some great resources from their campaign to fight the removal of gluten free on prescription.
- CUK have published a set of gluten-free facts, challenging some of the myths about gluten-free foods on prescription.
- CUK were also successful in legally challenging Somerset CCG's decision to remove Gluten Free completely, making the case that the most vulnerable patients should still have access.
The Somerset CCG decision confirms that even when gluten free is removed from a formulary, decisions about prescribing gluten free remain at the discretion of GPs:
- "When exercising their judgment, GPs are expected to take the CCG formulary fully into account, alongside each individual's needs. The application of the formulary is at the discretion of each GP. The formulary does not override the responsibility of a GP to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian."
- Check out the British Society of Gastroenterology's (BSG) statement on the removal of Gluten Free, which sets out their concerns.
- Read NHS England's press release regarding the planned review of gluten free on prescription, Simon Stevens view, given in an interview with the Daily Mail, and Coeliac UK's response.
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