Former nurse's anger over prescription restrictions

Coeliac disease is a life-long immune condition caused by intolerance to gluten. The only treatment is strict adherence to a diet without it.

If ignored, it can lead to serious health issues, including osteoporosis, infertility and cancer.

Mrs Henley, 61, from Holliers Hill, an NHS nurse for 37 years, was diagnosed as coeliac 29 years ago. She has just discovered the mix she uses to bake fresh rolls - the nearest thing she gets to real bread - had been axed from prescriptions as part of NHS cost-cutting.

She said: “All gluten-free products are highly priced in the shops - for example four bread rolls cost 84p, but if they’re gluten free, the price rockets to £2.19 - and yet for coeliacs they’re essential.

“I have never abused my prescriptions and only ever ordered what I required. Nor is it a case of wanting something for nothing. Prescriptions in England are not free and I have paid into the system all my working life.

“Once again, pensioners on limited incomes are hit hardest.”

Mrs Henley added: “It also seems to me that the Primary Care Trust wants to take away my little bit of normality: being able to bake fresh rolls is psychologically important.

“This decision undermines my ability to manage my condition.

“Unlike people receiving nicotine patches on prescription to help them give up smoking, for instance, my condition gives me no choice but to eat gluten-free.

“It would have been nice to have some consultation about this decision and maybe a better compromise could have been made.”

Mrs Henley has voiced her concerns to Bexhill and Battle MP Greg Barker, while national charity Coeliac UK is calling on PCTs in East Sussex to reverse their new policy on gluten-free prescribing, which it says ignores 2004 national guidelines.

A spokeswoman for Hastings and Rother PCT said difficult choices had to be made on prescription products to ensure fairness for all, and explained that suppliers’ charges to the NHS meant gluten-free items often cost much more than buying direct from supermarkets

She said: “For example, a £2 packet of pasta in the shops could cost the NHS up to £47 - £5 from the manufacturer, plus a £1 dispensing fee, £1 pharmacy fee and a delivery charge up to £40.

“We currently spend £2.3 million a year across the south-east on gluten-free food.

“As a wide range of such products is now available in supermarkets, which was not previously the case, it is felt reasonable to expect people to buy some of their own foods, as we do not pay for food for patients with other long-term food intolerances.

“However, as we recognise that having a gluten-free diet costs more than an average diet, the NHS will continue to help towards these costs by providing staple foods such as long-life bread and flour, which are less likely to attract substantial additional charges to the NHS.

“This has not been an easy decision and we are beginning a process of continual engagement with both patients and GPs to review the impact of this recommendation on patients.

“We will also be continuing regional and national talks to bring a consistent approach across the country.”

PICTURED: Margaret Henley