Full details of this are on the Gluten Free Message Board http://members2.boardhost.com/glutenfree/index-1.html
There is also an online petition
This is very serious as national research shows that the availability of prescription goods is critical in encouraging Coeliac’s to stick to a gluten free diet – the only treatment available for the disease
I emailed Ann Sutton the CEO of the NHS Eastern and Coastal Kent PCT to share my concerns. I’ve copied the text below –
Dear Ms Sutton,
I understand that you are chairing a meeting to consider the reduction in range of prescription based gluten free foods used for the long term management of Coeliac Disease by PCT’s based in Sussex, Surrey and Kent.
My son Niall is 8 years old and has been diagnosed with Coeliac Disease for about 5 years. In that time the range of products available in supermarkets has improved but the quality of those products does not match the fresh gluten free bread and pasta that is available by prescription. As Niall is obviously at school the availability of a reasonable quality gluten free bread for his packed lunch is vital. (Eating school meals is too high risk a strategy so this is our only option.) WE already spend a significant amount of family income on very expensive gluten free products from supermarkets. This decision makes it worse.
Clinical advice shows that strict adherence to a gluten free diet is the only way to treat Coeliac disease. Research shows that the availability of reasonable quality prescription food means that more Coeliac’s maintain a gluten free diet, thus reducing the risks of other medical conditions that can arise from untreated Coeliac disease.
If you have any doubts, I would suggest obtaining some long life gluten free bread and trying to eat it. It is more like cardboard than bread.
To summarise my key points are
• The types of food that are included in the list are designed to be as unattractive as a cost saving rather than palliative measure.
• Shop sold bread is not as good and commonly costs at least £.2.50 for a small (400g) loaf.
• Lack of prescription products will encourage people to cease a gluten free diet.
• This policy hits poorer families disproportionately (I would like to see a diversity impact assessment and that that takes vulnerable peoples needs into account)
I hope that you can feedback the results of the meeting. In any event I would be grateful if you can advise me of the best contact to obtain reports, DIA’s and minutes of the original decision to reduce the list of products available, as I would like to make a request to see them under the Freedom of Information Act.
I appreciate that these are difficult times but I feel that the list of products has been curtailed without regard to patients’ needs. For what it is worth, I support the approach of not prescribing biscuits etc.
I’m sure the Committee will have seen it but I have attached a PDF published by Coeliac UK that sets out clearly the need for good quality prescription based gluten free food.
Extract from Coeliac UK
Health risks linked to gluten ingestion include poor growth in childhood, osteopenia,
osteoporosis, infertility, the development of other autoimmune disorders, and malignancy,
particularly lymphoma. Coeliac disease is unique in that a specific, effective treatment is
available in the form of lifelong exclusion of gluten from the diet. Those who adhere strictly
to a gluten-free diet can lead full, healthy lives and are protected from the development of
the health risks associated with the untreated condition. It is crucial therefore, that people
with coeliac disease can obtain gluten-free foods to satisfy their needs.
People with coeliac disease have varying requirements for gluten-free foods depending on
their age, gender, occupation and lifestyle. A wide range of specially formulated gluten-free
products is available on prescription and easy access to these is vital to promote strict
A recent survey of 1,000 adults with coeliac disease undertaken by Nutricia Dietary Care
and SHS International found that the availability of gluten-free foods on prescription aids
dietary compliance. Of those respondents who received gluten-free foods on prescription,
37% reported that they adhered strictly to the diet, 33% rarely lapsed and 19% lapsed only
occasionally. Importantly, 37% said that the availability of foods on prescription would aid
compliance. Clearly, a variety and easy access to a range of gluten-free foods on
prescription are important aids to compliance.