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Should gluten-free be available on prescription?

The cases for and against NHS-funded products for coeliacs

“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.

Bad education?

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

England

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.

Scotland

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.

Jersey

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. 


 

 

Should gluten-free products be available on prescription?

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15 Comments

Claire Hoelters, Community pharmacist

West Sussex uses a scheme similar to Scotland. The GP signs up the patient to the scheme, confirming their eligibility, then the pharmacy manages the ordering from an allowable food list with fixed monthly limits. I do think the costs incurred by the NHS for symptom flare up if coeliacs eat gluten need to be considered. Would this rise with no foods prescribed? Is it not a case of prevention is better (and cheaper) than cure?

Caroline Sokhi, Pharmacy

North east essex and mid Essex ccgs no longer support prescribing of any gf products. I reviewed gp records and found a patient with 38 different gf products on his repeat list! Included various biscuits, wafers and pastas.

Stephen Eggleston, Community pharmacist

If GF is to on the NHS, there should be strict limits set on the range & quantity allowed

Caroline Sokhi, Pharmacy

None of us should be eating biscuits so why encourage an unhealthy diet by allowing them on prescription?

Stephen Eggleston, Community pharmacist

Given that a)gf products are now widely available and reasonably priced and b) pasta and bread are being cited as a factor in developing diabetes so may not have a place in a "healthy diet" it doesn't make much sense to provide the items at tax-payers expense. Many people have various food allergies - they usually have to self-fund. Why should this be different?

Amal England, Public Relations

As the previous reply stated, CD is an autoimmune disease. Further, there is also a non-CD gluten allergy, which has similar symptoms to CD, but the intestinal wall damage is absent in NCDGA. I do believe the system is flawed- the NHS should subsidise GF foods to bring the prices in line with no-GF foods, eg, a loaf GF brown bread should have a minimum charge to the patient of say 70-100p, irrespective of the age or income (the goverment already pays sufficient benefit to allow those concernd to buy a 70p loaf). There is also a truely insulting and backward element of having GF foods on prescription and that is the prescribing of cakes, biscuits, pizza, orange coloured biscuist etc- I find it sickening to be handing out sweet tea biscuits, to a grown person who visibly looks and drives in a sea of wealth. In addition, the use of GF foods is scratching the surface, downstream of the root cause- this is typically what society and Big Pharma have become.

 

Sam Patel, Community pharmacist

Coeliac disease is an autoimmune disease not allergy, perhaps you need to do some CPD so you know what you are commenting on.

 

 

janet maynard, Community pharmacist

our gluten free system seems to be working well in Cumbria

 

Diana Taylor, Primary care pharmacist

Possibly coeliacs should pay the same as everybody else for a loaf of bread or packet of pasta, and the NHS subsidise the difference, even for people with exemption certificates? Might be difficult in practice though. What is not fair is the variation across the country.

Lancelot Spratt, Accuracy checking technician

http://www.mysupermarket.co.uk/shelves/Gluten_Free_in_ASDA.html

Here's a sample of gluten free products from a major supermarket.

 

The prices are not unreasonable when you consider that only one person is eating them and they can be frozen. I suggest that only flour be available on a script and that normal script limits are observed. Scripts only issued once per 28 days. So one person eating one loaf per week is 4 loaves per month. If they want to eat more then they can buy it at a supermarket.

 

Sam Patel, Community pharmacist

Really? Have you ever bought GF bread? It is £3 for half size loaf, most of which breaks in half or crumbles. If you think one of these lasts a week then you are sadly mistaken. Most GF food is very expensive and most coeliacs need to go to 3 different supermarkets to get the products they need as they all stock different range. This is all very well for those who can afford it, but elderly and low income coeliacs cannot do this. They will not stick to GF diet and the body will start attacking itself and cause more health problems which the NHS will need to fund. You should try going on a strict GF diet for a few weeks and then comment on how easy it is - many products that you think you could eat you can't - even grains that are naturally GF due to contamination or other added ingredients. GF alternatives are expensive- they have to be checked and certified as even very small trace amounts can cause damage. A family with just one coeliac has a choice - cook different meals being very careful not to cross contaminate or cook one which adds to cost. I would say before anybody makes a judgement they need to do it themselves or understand the proper health economics. 

Chris Pharmacist, Community pharmacist

Actually it varies from £2- £3 for a full GF loaf with ordinary bread varying from £1 - £2 so GF bread is hardly going to break the bank. ~Also consider the delivery charges, the fact that it has to be ordered in bulk (probably with significant waste). We all know the coeliacs have to make sacrifices and unpleasant restrictions to their diet but that doesn't mean limited NHS resources should be wasted...last week U threw away 9 boxes of Warburtons thins because the patient didn't collect it in time despite being contacted. GF on Rx should be stopped.

Chris Pharmacist, Community pharmacist

*I not U

John Randell, Non Pharmacist Branch Manager

i think the main issue is that in an enviroment where the nhs is cutting funding left right and center......you will have well to do people who can afford to buy the bread abuse the system.fair enough if you cant afford it i.e on income support or if your elderly...or any on the exemptions for that matter.......its jut some people abuse the system.they will get a prepayment for £29 and end up ordering £100 plus worth of bread...... the points based system/allowance is often not monitered by the surgeries so these oppotunistic folks will order 20/30 loafs and as a pharmaist your wondering if they have some sort of wholesale buisness going.

Gerry Diamond, Primary care pharmacist

Just a note that in December 2015, Blackpool CCG formally made gluten free products black listed in the locality and is no longer available on prescription.

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