14 December 2016

We are very disappointed to tell you that the CCG has announced the decision to stop prescribing gluten-free foods from 1 February 2017 unless exceptional circumstances exist. We will be contacting the CCG to understand how they will determine which patients are eligible to continue to receive gluten-free food on prescription.

While the CCG have made this decision, we would like to stress that the final decision about what to prescribe lies with your GP.  We would therefore encourage you to have a discussion with your GP about gluten-free food on prescription if you are concerned about the impact this may have on you being able to manage your gluten-free diet.

We understand the importance of access to gluten-free products on prescription for people with coeliac disease, particularly those on low incomes or those only able to shop in small convenience stores which do not stock staple gluten-free foods. We are concerned that the measures taken by the CCG to save money will affect people’s ability to stick to the gluten-free diet and in turn increase the likelihood of complications of coeliac disease such as osteoporosis.  As well as the suffering this may cause, it will also cost the NHS more in the long term.

Although we understand the budgetary pressures being faced by the NHS, making efficiencies in NHS procurement and use of alternative supply models could enable cost savings to be made whilst still supporting people with coeliac disease.  Coeliac UK has already highlighted alternative prescribing schemes, where there is direct supply of gluten-free food from the pharmacy, making savings around product control and saving GP time without completely restricting access to gluten-free food on prescription.

If you would like to oppose the prescription cuts, there are several things that you can do:

• Contact the local Healthwatch by emailing info@healthwatchsthelens.co.uk calling on  0300 111 0007 or writing to Healthwatch St Helens, Tontine House, 24 Church Street, St Helens, WA10 1BD
• Contact St Helens CCG by emailing communications.ccg@sthelensccg.nhs.uk, writing to St Helens CCG, Salisbury Street, Off Chalon Way, St Helens, Merseyside, WA10 1FY or calling on 0800 218 2333
• 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
• Speak with your local GP about your individual case
• Watch out for more information on next campaign steps particularly on our website

As part of our work in opposing prescription cuts, we are looking for people affected by these 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 CCG on the issue and will seek the support of clinicians in the area. We will be asking the CCG 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 campaigns and research and let you know about developments in gluten-free prescribing in Crossed Grain magazine, our electronic newsletters and on our website.