21 November 2018

We contacted members of Coeliac UK in June to inform them that four Nottinghamshire Clinical Commissioning Groups (CCGs) were reviewing their policy on access to gluten free food on prescription and to give you the opportunity to have your say. Thank you to everyone who took the time to respond to the consultation.

We are very disappointed to tell you that the CCGs have made the decision to remove routine access to gluten free food on prescription from 3 December.

The final decision about what to prescribe is made by your GP as GPs can use their clinical discretion to prescribe outside of these guidelines. Therefore, if you are concerned that this policy change will have an impact on your ability to manage your gluten free diet and your coeliac disease, you should see your GP for advice.

National decision on the future of gluten free prescribing

You may have read in Crossed Grain magazine or on our website that the Department of Health and Social Care held a national consultation on the future of gluten free prescribing. The decision has been announced to retain access to gluten free bread and flour mixes on prescription.

The decision by the Nottinghamshire CCGs is therefore at odds with the national guidance. CCGs can make their own policies but this is difficult to justify in light of the national decision and we will be challenging the CCGs on this decision.

To respond to your local CCGs decision to withdraw prescriptions:

• Contact Healthwatch Nottinghamshire by phone (0115 956 5313) or send an email via the online form.
• Write to your local MP, we have a sample letter on our website which you can use, or please feel free to write your own letter explaining how the changes will affect you
• Contact your CCG. If you are not sure which CCG area you live in, you can check by using the map on our website. 
• Nottingham City CCG
• Rushcliffe CCG
• Nottingham West CCG
• Nottingham East and North CCG
• Speak with your local GP about your individual case

We understand the importance of having access to gluten free food on prescription, particularly for people on low incomes and those only able to shop in small convenience stores that do not stock staple gluten free foods. We are concerned that the measures taken by the CCGs to save money will affect the ability of patients with coeliac disease to stick to the gluten free diet and that this will result in an increase in the likelihood of complications of coeliac disease. As well as the individual suffering this may cause, it will also cost the NHS more in the long term.

As part of our work, we are looking for people affected by prescribing cuts to act as case studies. This will enable us to give examples to the media of how this policy change has affected people with coeliac disease. To become a case study or to find out more about interview opportunities please call us on 0333 332 2033.

We will continue to make strong representations to the CCGs on the issue and will also seek the support of healthcare professionals in the area. We will be asking the CCGs how the impact of the change on the long term health of people with coeliac disease will be monitored.

We will keep you informed about our campaigning and research and let you know about developments in gluten free prescribing in Crossed Grain magazine, our electronic newsletters and on our website.