BSNA guidelines

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A GUIDE TO THE ROLE OF THE
GLUTEN-FREE PRESCRIPTION IN THE
MANAGEMENT OF COELIAC DISEASE


Introduction
The British Specialist Nutrition Association (BSNA) has compiled this guide to provide information on
the role a gluten-free prescription plays in the management of coeliac disease.
Coeliac disease is
unique amongst long-term gastrointestinal disorders in that it can be effectively treated by diet alone
and does not require long-term drug intervention.1 Experts agree that when patients adhere to a strict
gluten-free diet most will be restored to full health and will be protected against developing long-term
health complications.

1 National Institute of Health & Clinical Excellence (NICE). Clinical Guideline 86. Recognition and assessment of coeliac disease. 2009.
www.nice.org.uk

Comment
The role of the gluten-free prescription is not to meet all the daily dietary requirements of coeliacs, but to provide the patient
with a guaranteed reasonable supply of essential staple gluten-free foods such as bread and flour from which they can
successfully manage their own condition.
Coeliac UK, the national charity working for people with coeliac disease, has stated that gluten-free prescribing focusing
on staple foods should be viewed as an essential NHS service available to all patients with diagnosed coeliac disease. The
BSNA supports this view in recognising the provision of essential foods on prescription as part of a foundation of support
provided by the NHS....


The Nutritional Role of Gluten-free Specialist Foods

The prescribing of gluten-free foods is based on
providing coeliac patients with 15% of their total
energy requirements.

This guidance is supported
by a UK dietary survey which analysed and
reviewed consumption data from food diaries of
adults and children with coeliac disease.

Specialist gluten-free foods were developed to
assist coeliac patients in maintaining dietary
balance and nutritional adequacy.

.....

Kinsey L, Burden ST & Bannerman E. A dietary survey to determine if patients with coeliac disease are meeting current healthy eating
guidelines and how their diet compares to that of the British general population. Eur J Clin Nut. 2007;1-10

...The largest ever survey4 of 3,500 coeliacs found that the majority valued the role the gluten-free
prescription played in helping them manage their condition

* 87% were aware of the health risks from not adhering to a gluten-free diet
* 94% agreed that it was important for them to receive a regular supply of everyday staple gluten-free
foods such as bread and flour to help them adhere to the diet
* 79% rated access to a gluten-free prescription as a key factor affecting their ability to adhere to a
gluten-free diet
1 Gluten-free foods: a prescribing guide (BDA, PCSG, Coeliac UK 2004) (Coeliac UK revised its policy on gluten-free prescribing in 2010:
http://www.coeliac.org.uk)
2 British Society of Gastroenterology (BSG). The management of adults with coeliac disease. 2010
3 Coeliac UK Cost Project 2009
4 British Specialist Nutrition Association (BSNA) Survey of 3,500 coeliac patients. October 2010

www.bsna.co.uk/documents/BSNA%20GF%20Brochure%202011.pdf

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The impact of the
restrictions to
gluten-free
prescription foods
on people with
Coeliac Disease

British Specialist Nutrition Association


Executive Summary
86% of the people who undertook our quantitative study felt that obtaining gluten-free foods on
prescription was important in aiding their adherence to a gluten-free diet. People of a lower socioeconomic
grouping relied more heavily on their prescriptions to manage their condition.

65% of those who had had their prescriptions restricted by their local Primary Care Trust reported a
negative impact on the management of their condition. A quarter of this sample (25%) reported a large
negative impact. There is also a correlation between severity of cuts and the negative impact they have:
respondents in those PCTs with restrictions to both the availability of fresh bread and units per person
reported a greater negative impact (44%) than those living in PCTs that have restricted either bread (37%)
or units available on prescription (43%).

The greatest negative impact of the restrictions was a financial one. 82% of those saying that prescription
restrictions have had a negative impact on them said it was harder to afford gluten-free products to help
them to manage their diet.

The financial implications of the restrictions were felt more acutely by lower socio economic groups and
amongst women. 84% of female respondents reported a negative impact on their finances as opposed to
78% men. More severe cuts have more severe financial implications - in areas where only fresh bread had
been restricted, 79% reported it being harder to afford food as the main reason for the negative impact, as
opposed to 84% of those in areas where both restrictions had come into place.

Other deleterious effects on managing Coeliac Disease were also noted: a third (33%) said that restrictions
to prescriptions had made gluten-free food harder to find, and one in seven (14%) reported that
restrictions to their prescriptions had made them less sure that what they were eating was right for them.
Respondents also reported having to travel farther from home to find suitable foods, costing them more
money and impacting on their overall wellbeing.

Overall, only half of the Coeliac patients surveyed (53%) reported that they visit their GP in order to
manage their condition, while visits to other health care professionals such as dietitians (38%) and
pharmacists (14%) was lower.

Coeliac patients clearly feel that they have rights to NHS provision for gluten-free food, with nine out of ten
(89%) agreeing that food items should be available on the NHS if a person has a medical condition that
necessitates it. Qualitatively, there was anger and frustration that sufferers of conditions like asthma were
accounted for on the NHS while Coeliac patients were not.

When it came to understanding why cuts had taken place, almost half (47%) of respondents thought that
the NHS had deemed it too expensive to continue to provide gluten-free foods on prescription to the same
level as before. Coeliac patients do not demand luxury items on their prescription and value the provision
of savoury items over sweet. Around two thirds (65%) agreed that savoury foods that may not necessarily
form part of a staple diet should be available on prescription, including pizza bases and crackers, but less
than one in four agreed that sweet items like biscuits and cakes should be available on prescription (37%).
Almost all (97%) of those with Coeliac Disease reported a need to supplement their diet with gluten-free
products, in addition to any prescription they may be receiving.
The majority of sufferers (56%) spent £20-
£49.99 on supplementing their diet with gluten-free food products on average each month.

The nature of the cuts have had an impact on the amount they spend: those living in PCT areas with restrictions to both
bread and units were spending more to supplement their diet (78% spending £20.00 -£50+) than those
from a PCT with restrictions to either bread (69%) or units (68%). .....


www.bsna.co.uk/documents/Report%20on%20Impact%20of%20Restrictions%20to%20Gluten-Free%20Prescription%20Foods.fpdf.pdf