23 November 2017

We are very disappointed to tell you that the West Berkshire Clinical Commissioning Groups (CCGs) have made the decision to remove access to gluten free food on prescription. This guidance will come into effect as of 1 February 2018.

The CCGs have confirmed that GPs can use the individual funding request process to  continue to prescribe outside of these guidelines. Therefore, if you are concerned that this policy change is having an impact on your ability to manage your gluten free diet and your coeliac disease, you should see your GP for advice.

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.

Have your say

To respond to your local CCG’s decision to withdraw prescriptions:

•    Contact your local Healthwatch:
      o    Contact Healthwatch West Berkshire by emailing (contact@healthwatchwestberks.org.uk), calling 01635 886 210 or writing to Healthwatch West Berkshire, Broadway House, 4-8 The Broadway, Northbrook Street, Newbury, RG14 1BA
      o    Contact Healthwatch Wokingham by emailing (enquiries@healthwatchwokingham.co.uk), calling 0118 4181 418 or writing to Healthwatch Wokingham, Wokingham Town Hall, Market Square, Wokingham, RG40 1AS

•    Contact your local CCG (if you're unsure, you can check on our prescriptions map):
      o    Contact Newbury and Districts CCG by emailing (NDCCG.enquiries@nhs.net), writing to NHS Newbury & District Clinical Commissioning Group, 23A Kingfisher Court, Hambridge Road, Newbury, Berkshire, RG14 5SJ, or calling on 0300 123 1720
      o    Contact Wokingham CCG by emailing (feedback.wokinghamccg@nhs.net), writing to NHS Wokingham CCG, Chalfont Surgery, Chalfont Close, Lower Earley, Reading, RG6 5HZ, or calling on 0118 929 9469, extn 3487
      o    Contact South Reading CCG by emailing (southreadingccg@nhs.net), writing to NHS South Reading CCG, 57-59 Bath Road Reading, Berkshire RG30 2BA, or calling on 0118 950 3094
      o    Contact North and West Reading CCG by emailing (RCCG.NandWReadingCCG@nhs.net), writing to NHS North and West Reading CCG, 57-59 Bath Road, Reading, Berkshire RG30 2BA, or calling on 0118 950 3094

•    Write to your local MP, 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.

Become a case study

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 clinicians 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.

Department of Health national consultation on gluten free prescribing

You may have read in Crossed Grain magazine or on our website about the Department of Health consultation on the future of gluten free prescribing. This consultation is looking at three options for the future of gluten free prescribing across England:
•    Make no changes to current gluten free prescribing legislation
•    Withdraw all gluten free prescriptions
•    Only allow the prescribing of certain gluten free foods (eg limited to bread and flour)

We have responded to the national consultation and you can read our response here. We have also had a meeting with representatives from the Department of Health to fight to retain access to prescribing. The report on the consultation is due to be published this autumn and in the meantime we are stepping up our lobbying of MPs on this issue.

We will be challenging Sheffield CCG on their decision to make changes to local prescribing while a national consultation is underway. We will also ask how they will be reviewing their local policy once the result of the national consultation is known.

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.