Campaigning on health
There are many challenges facing us in the health environment. None are bigger than addressing the half a million people still without a confirmed diagnosis, but with improvements still required around post diagnosis support and the retention of prescriptions, there are many areas where we need the support of Members.
Campaigning for prescriptions
Gluten-free prescriptions are an important part of patient support in managing the lifelong gluten-free diet which is the only treatment for coeliac disease. A number of Clinical Commissioning Groups (CCGs) in England have been reviewing policies on gluten-free prescribing and although the majority are following National Prescribing Guidelines (around 60%), over a third are now restricting access to gluten-free food on prescription for people with coeliac disease. We are campaigning for gluten-free prescriptions to remain within the NHS as an important support to people with coeliac disease.
Finding the half a million people living without coeliac disease diagnosis
Following years of lobbying policy makers and healthcare professionals for improved diagnosis of coeliac disease, in 2009 and 2015 the National Institute for Health Care Excellence (NICE) published guidelines which set out how healthcare professionals should diagnose coeliac disease. These will then form the basis for the development of a Quality Standard for coeliac disease which will drive and measure improvements within the care of those with coeliac disease.
Once these new guidelines are published, we will want to see a dramatic change in the diagnosis rate for coeliac disease. We will continue to work with healthcare professionals to raise awareness and Members will be crucial in encouraging and engaging friends and family with symptoms of coeliac disease to get checked out.
Raising awareness of coeliac disease
As well as key audiences such as healthcare professionals and the food sector, we need more people to understand coeliac disease and dermatitis herpetiformis and the problems faced by those with the condition.
To raise awareness, every May we run an Awareness Week to make noise around the needs of people with coeliac disease. This is well established on the calendar and allows us to work with our Members to collectively say the same thing and make a big impact. This year, we focus on diagnosis.