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Making the Case for Gluten Free

The issue

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. 

However the BDA beleives that withdrawing gluten free from prescription is a false economy and does not support patients wellbeing. Recent research by Peters et al has shown that patients want staples to be available and that the removal of prescriptions has an impact on their quality of life. 

In March 2017, NHS England announced plans to review and issue guidance on 'Low Value Prescription Items', including gluten free foods for the whole of England. The Department of Health's response was published on the 1st February 2018, and concluded that breads and mixes should be kept on prescription. The BDA welcomes this conclusion, which acknowledges the need to help patients with Coeliac Disease to maintain a healthy diet. 

The government consulted on this new process in September 2018. The BDA responded, and a summary of the consultation outcomes can be read here. The new prescribing regulations came into force from December 4th 2018 and can be found here. New guidance for CCGs on prescribing breads and mixes was published on 28 November 2018. 

The BDA was disappointed both with some of the content of the guidance and the fact that NHS England chose to communicate the guidance in such a way as to undermine the importance of gluten free prescribing, despite the consultation outcome. We wrote to NHS England to express our concerns.  

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What we want to see

The BDA believes that those CCGs that have removed gluten free from prescription completely should reconsider their position in line with DHSC recommendations, as removing them 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. Coeliac UK have published updated National Prescribing Guidelines which include reduced recommendations for just bread and flour mixes for England only. 

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 believe 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

Even thought the government has decided to retain bread and mixes on prescription, as many as a third of CCGs have severely restricted or removed all products from prescrption already. Many will continue to consider total removal, independent of the government's decision. We need your help to ensure we identify these cases 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. 

In places where prescriptions have already been removed, we will now be looking to encourage CCGs to reverse their decision in line with government's consultation outcome. 

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 is the BDA doing?

The BDA are working with Coeliac UK and other partners to campaign nationally for a change of approach by CCGs that have already removed presciptions. 

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. 

Further information

BDA:

  • 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.

  • Contact the BDA team if you would like the BDA Chairman to write to your local CCG to support local calls for gluten free food to remain on prescription. 

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. 
  • 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 about Luton CCG, where they decided to retain breads and mixes in line with the national consultation after previously proposing complete removal. 
  • 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. 

Coeliac UK: