Dizzy Miss Lizzy

Everything and Nothing

Not a matter of taste!

Last week a lot of people commenting on a BBC Have Your Say (HYS) topic were getting heated about prescription pizzas. Why should anyone get their pizzas free at the tax payers’ expense?

To avoid misunderstanding these weren’t ordinary pizzas but gluten free pizza bases available on prescription for sufferers of a medical condition that can be seriously debilitating if gluten is ingested.

The original story was highlighting the excessive charges for the distribution of gluten free prescription products but that didn’t stop some commentators banging the “just do without” drum, confusing “on prescription” with “free” or simply advising sufferers to buy it at their own expense from a supermarket.

As a sufferer of coeliac disease I am one of those who must follow a strictly gluten free diet.

Prescription charges

Prescriptions for gluten free food aren’t free but I can understand the confusion. At a recent gathering of coeliac sufferers all the participants except me were exempt from prescription charges, either because of their age or because of some other condition. When the topic of food costs arose almost all thought the GF food on prescription was free. They were wrong. It isn’t. Coeliac, like asthma, does not qualify for exemption from prescription charges.

A few months after I was diagnosed I tried getting a few items on prescription, mainly because some of the items I wanted to try are ONLY available that way. Due to my naivety with the system I foolishly added a packed of biscuits to the order. They cost me £7.20. Biscuits may be luxury items as the people commenting on HYS point out, but in my book £7.20 is more than enough for a few of even the most luxurious digestives.

To cut a long story short I didn’t get on with the prescription regime and I abandoned it. If the bread were tasty and had the barest resemblance to what most folk think of as bread it may have been worth it. As it was I was frustrated with the need to visit my doctor if I fancied a different type of bread bun. I work more than an hour’s drive form my GP so the hidden cost of lost time and fuel outweighed the benefit because, to be honest, I couldn’t eat enough of the stuff to make even a three month pre-pay certificate worth while.

Don’t get me wrong. The gluten free supermarket bread is very expensive. A basic GF loaf costs about three times more than luxury bread (price comparison site 1st June 2012: Most bread 12-15p per 100g; Tesco luxury Multi Grain 16.9p per 100g; Gluten free 50p per 100g ).

Limited Choice

I rarely ate biscuits and almost no cake before I was diagnosed, so I don’t miss those items. I already ate what most people would call a healthy diet, home cooked from fresh ingredients, so the impact of the diagnosis for me is probably at the lower end of the scale. A couple of bread items a week from the supermarket suffices and I can change my order every week with no extra effort or time off work.

The disadvantage of relying on supermarkets is that some of the better products are only available on prescription. Most supermarkets have very limited ranges.

I challenged an “on prescription only” supplier and its representative explained that they provide high quality products which less well off suffers may not be able to afford at supermarket prices. They didn’t want to deprive the poor of their superior product. But why not provide via both outlets? She didn’t say.

Gluten in everything

The biggest challenge of following a gluten free diet isn’t just finding and paying for bread, cakes and biscuits. Gluten it seems has useful properties for food manufacturers. Gluten containing ingredients or additives are, for example, found in some yogurts and soft cheese, many soups (barley), mustards, sauces, some crisps, most pre-packed lunch salads including tuna and green bean … the list is endless. And that is before the problems of contamination.

The cost of a general shopping basket can increase, even without the special gluten free bread based products, so for those with more time and patience than I, or who struggle on a pension or are low paid with a couple of kids to feed, the prescription may mean the difference between eating properly and malnutrition.

Are prescriptions the answer?

The prescription system isn’t designed for and, arguably, doesn’t work for food. The commentators on HYS who object to the NHS paying for food do have a point. At least to an extent.

Most drugs must be prescribed by a doctor even if the patient pays the market rate (private prescriptions) because they are potentially dangerous if  incorrectly used or taken in the wrong doses or combinations. As I wrote in a previous blog, my husband couldn’t get timozolomide on the NHS but he still needed a prescription before it could be dispensed to him.

It seems to me that the current prescription system conflates the control of drugs with the NHS subsidy of health care costs.

Gluten free food is not a drug. It shouldn’t need the valuable time of a doctor to amend my shopping list. He isn’t adding any value or safeguarding me from harm when I change from loaves to buns.

The prescription charge is also misapplied. Most people don’t need drugs but all need food and everyone expects to pay for their food according to their choice and/or means whether they are at the value or luxury end of the market.

While medical advice is that bread is an essential part of a healthy balanced diet the challenge for the NHS is to ensure that GF bread is affordable to people who would, given a choice, purchase at the value end of the market but without lining the pockets of the manufacturers and distributors.

If this is done through the normal retail distribution system, frees up the time of doctors and avoids the inefficiencies of delivering single orders to pharmacies, so much the better. I don’t have an answer but alternative schemes such as vouchers should be investigated.

Social Exclusion

Shopping and paying for gluten free food in supermarkets can be frustrating and costly, but  it isn’t the only obstacle to maintaining a gluten free diet. The social pressures and fear of social exclusion are far more powerful influences.

How often do you go for a beer or pizza with your mates, grab a sandwich for a quick lunch with a colleague or drop into a cafe for a cuppa and a cake with a friend on a day out? How about birthday cakes in the office or working lunches?

Eating and drinking is often central to a social event. Food is used to celebrate and bring together communities, bind social groups, foster business contacts and even start romances. If you can’t partake you can feel socially excluded, lonely in the crowd, different, awkward – it is the most serious problem faced by many coeliacs, especially the youngsters: teenagers and students are particularly badly hit.

Coming face to face with a menu containing no gluten free items is as bad as being left outside hungry and isolated. Jacket potato with cheese or the rocket and tomato salad with mozzerella lose their appeal when they are the only choice time after time. And forget  desert!

It is easier in expensive restaurants where the chef will come to the table to discuss the options and if necessary prepare something specific, but this luxury is beyond the reach of many and, with the exception of the mainly gluten free friendly Indian restaurants, not common in the typical watering holes of students or a family on a day trip. Set menus and pre-prepared meals about which the serving staff know little and can change less is standard fare.

The Jubilee street parties this weekend will call for a brave face from many coeliacs when the plates of sandwiches, sausage rolls, fairy cakes and flapjacks are passed around. Food prepared by the community for the community to foster the spirit of belonging and common heritage will be politely declined; It could be tough, sitting among the feasting crowd, eating alone from a plastic lunch box, trying to find another way to join in the party. But then again, it will be a handy excuse to pass on the curled up crusts and salmon paste butties.

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