“The last thing you want when you go to the chemist to pick up food for yourself or your children is to feel like you’re robbing the state.”
This is just one of Paul Finney’s experiences of having coeliac disease. Like many people with this condition, he used to visit his local pharmacy to pick up a prescription for food, which he says sells at “ridiculous prices” in supermarkets. But he stopped dropping by the pharmacy to collect these products “because of the stigma that was attached to it”. “I felt judged. People were shaking their heads,” he says.
Mr Finney feels that his fellow coeliacs have been “hammered” by the media. Last August, national newspapers reported that the NHS spent nearly £27 million on gluten-free food in one year. This food, The Telegraph claimed, included “biscuits, doughnuts and pizza”. Or, as the Daily Mail noted, “calorie-rich treats”.
With a gluten-free diet developing into something of a food fad, is it time to re-evaluate advice about diets? And what support should pharmacists offer coeliacs, who feel they cannot purchase basic items, such as bread and pasta, because they are being judged by the public?
Food on prescription
While doughnuts are not available on prescription to people with coeliac disease, shortbread and digestive biscuits do appear on charity Coeliac UK’s list of gluten-free prescription items. But Clark Edison, a pharmacy manager based in Yorkshire, believes coeliacs should only be able to get bread on prescription. Pasta and biscuits are not essential items, he says. “[If] you have a condition, you have to revaluate what you put into your body and what can cause you harm. Is it not time to rule out a few of those things?” he asks.
He recalls one family in particular that “flouted” the system. “They started off on the standard stuff – breads and rolls. Then they were given a catalogue of the branded selection – pasta and biscuits – and it was getting to the point that I was noticing there would be a couple of scripts coming in for these particular patients every couple of weeks, for a variety of things.
“What about other patients having to buy expensive food due to other conditions? It has to be fair."
Amish Patel, owner, Hodgson Pharmacy, Kent
“One day they came in with their younger son and they were choosing off the menu. One of the counter colleagues was informing them about one of the items that was out of stock. The mother let the child choose what they wanted instead.” Concerned about this incident, Mr Edison contacted his local GP, who promptly tailored his prescribing – and now these patients only have bread on prescription.
Kent contractor Amish Patel is opposed to coeliacs receiving any food on prescription. “What about other [patients] having to buy expensive food due to other conditions? It needs to be fair,” he says.
But locum pharmacist Cathryn Brown strongly agrees that coeliacs should get food on the NHS. Ms Brown, who is also a teacher-practitioner at the University of Central Lancashire, believes the scepticism of some pharmacists to coeliacs’ dietary needs stems from a lack of practical teaching about the disease at undergraduate level.
Mr Edison argues that if people with allergies cannot get food on prescription, why should coeliacs? But Ms Brown believes this condition is different, as it eliminates an “entire food group”. “We should see gluten-free food the same way we see medicines for other auto-immune conditions,” she says.
“The treatment for coeliacs is the diet, and that’s why we provide it on prescription. For most people [with allergies] it’s quite straightforward to avoid whatever it is you’re allergic to, and you get your EpiPen on prescription,” she says.
Pharmacy manager Babir Malik has experienced the condition from both sides of the counter. As someone with coeliac disease himself, he knows that if people are unable to get the food they want via prescription, it makes them less likely to stick to a gluten-free diet. He agrees that biscuits should not be available on prescription, but bread, flour and pasta should.
Other coeliacs tell C+D that they are reliant on the food they get on prescription. Janet Wilcock works in a GP surgery in North Wales. She says she would not be opposed to taking gluten-free items off prescription if they weren’t so expensive in supermarkets. “A little loaf, half the normal size, is £2.99. The range is so limited,” she says.
Cost is not the only consideration. Coeliac David Rose says prescription food is better than supermarket-bought products because it is fortified. He also believes there is a lot more choice for people with this condition if they order through a prescription. “The supermarket’s great for things like biscuits or cake, but if you want pasta, there’s normally one, maybe two, types available,” he says.
The Scottish system
One issue pharmacists agree on is that the system introduced in Scotland last year is far preferable to others around the UK (see below). This solution, they believe, would alleviate the problems pharmacists face with ordering items in bulk, which can mean the food is nearly out of date by the time the patient comes to collect it.
Mr Malik says that in Rotherham, dieticians have prescribed all gluten-free products for the past five years or so. “This has made lot of savings, as GPs aren't always familiar with the appropriate quantities to prescribe,” he says.
Would the same be true if the rest of the UK emulated the Scottish system and patients went directly to pharmacists to make orders? Mr Rose says: “If I brought a letter to the doctor’s secretary, they probably wouldn't know what the products are, so you’re going through three different people to place the order. If it’s in the pharmacy, they know what products are available.”
Even those sceptical about gluten-free scripts back the Scottish scheme, which sees patients get food for free. Mr Edison says it would allow pharmacists to have more control over what patients receive, and deter abuse of the system. “I’ve worked in a few surgeries. The patient will order food through a receptionist. There’s no checking if it’s been overused," he says. "If it was in the pharmacies, you could control it more.” And he believes gluten-free scripts would help patients, as “you’re having more conversations with them about the condition”.
A gluten-free pharmacy service
Pharmacists have told C+D they would support a rollout of the Scottish scheme to the rest of the UK. But is this likely? Coeliac UK has been pushing for this rollout for years. Similar schemes run in England on a small scale, such as in Cumbria. Ms Brown believes coeliacs in the area are a lot happier than in Lancashire, where she works.
A pharmacy-led gluten-free service could have massive benefits for patients, enabling them to deal with the people with the best skillset to help them, she says. And even GPs could reap the rewards. Sarah Sleet, chief executive of Coeliac UK, says: “They feel they could use their time more valuably than writing out prescriptions for these products, so there’s significant time-saving.”
The charity wants to see the scheme rolled out nationwide in England, and pledges to renew its efforts to engage with commissioners to get the scheme going, she says.
This could be good news for people with coeliac disease. The charity is an influential body, with close links to parliament. Whether the rest of the UK is about to get an overhaul of its system of gluten-free prescriptions remains to be seen. If it does happen, maybe these patients may no longer feel they are “robbing the state”, but that the state cares about their condition.
Gluten-free prescriptions around the UK
Patients pay the standard prescription charge of £8.20 for each gluten-free item. To reduce costs, many people with coeliac disease buy a pre-paid prescription certificate to cover their food, which costs £29.10 for three months or £104 for a year.
Wales and Northern Ireland
Prescriptions are free, so coeliacs can get gluten-free food for no cost. As in England, the amount they can receive is ultimately up to their GP.
The government pays pharmacies £125 a month to dispense gluten-free food without a prescription. Patients organise their order through the pharmacy, and do not have to pay.
Coeliacs cannot get gluten-free food on prescription, says Sarah Lotherington, a pharmacist on the island. Instead, the government gives them vouchers that they can redeem in shops or pharmacies in exchange for food.