It’s a disease, not a fad!

The withdrawal of funding for gluten-free foods is a national scandal, says Ross Ferguson.

We all know that the NHS is in dire straits and having to make tough decisions. But the fact that around 40 per cent of CCGs have now withdrawn funding for one of the few things that actually help people with an autoimmune disease with a prevalence of 1 per cent is a national scandal. Not only that, but what have they replaced it with? Absolutely nothing.

And worse, the NHS is now threatening to completely remove funding altogether.

Not just cake...

I’m talking about coeliac disease, and, no, it is not about cakes and biscuits, but the staples that the rest of us take for granted. Life-long avoidance of gluten is the only treatment for this condition. Easy, you might think – but give it a go for a week and see how you get on.

If you deviate back to your old gluten habits, then hopefully you are one of the lucky 99 per cent who won’t suffer the awful adverse effects caused by the body’s reaction to the gluten proteins in wheat, barley and rye, which cause the intestines to become inflamed, leading to malabsorption of nutrients.

Symptoms can include diarrhoea, bloating, wind, abdominal pain, mouth ulcers, tiredness, and, sometimes, unexpected weight loss.

Then there are the complications as a result of malabsorption, which include anaemia (due to iron, vitamin B12 and folic acid deficiency) and osteoporosis (due to calcium deficiency, as well as other nutrients). The restrictions on food choice also affect the behaviour of others towards them, resulting in psychological distress such as anxiety, stress or depression. Can you see what I’m getting at? This is a disease: not a fad or a lifestyle choice.

Pricing issues

I know what you’re thinking. Just get them at the supermarket – but seriously, have you actually checked the prices of gluten-free foods? They can be up to six times the price of the products we normally buy. Imagine the impact that has on the household budget of those people already struggling on low incomes.

The other issue is that we know that information, advice and support can contribute to ensuring that people with the condition have more positive outcomes. NICE recommends that they should be offered an annual review with a healthcare professional who:
• Measures weight and height
• Reviews symptoms
• Considers the need for assessment of diet and adherence to the gluten-free diet
• Considers the need for specialist dietetic and nutritional advice.

Can you think of any convenient location where they can get support, advice, information and an annual review? I can.

In Scotland, the gluten-free food service has been running for a couple of years, and while payment could be more generous (currently £125 per month) a large selection of staple gluten-free products is available directly from all pharmacies (a national scheme – imagine that!) on prescription, meaning patients no longer have to visit their GP to order their gluten-free products. Importantly, part of this service also includes an annual review in the pharmacy.

Yes, the NHS needs to prioritise spend, and not pay over the odds for gluten-free products, but blacklisting them all is completely wrong and sets a dangerous precedent.

So, until ranges of gluten-free foods are available freely in convenient locations for people with coeliac disease, and they have price parity with their gluteny equivalents, then there needs to be a solution rather than just removing the funding and leaving sufferers to fend for themselves.

We need to ensure that people with this condition receive the help and support that any other patient with a medical condition deserves.

The NHS is now threatening to completely remove funding altogether

Ross Ferguson is a pharmacy and healthcare writer and editor of pharmacyinpractice.scot

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