Prescriptions for GF in the South East

PCT’s across the South East are preparing to reduce the availability of prescription gluten free poroducts to only include long life bread and flour.
Full details of this are on the Gluten Free Message Board http://members2.boardhost.com/glutenfree/index-1.html

There is also an online petition

http://www.thepetitionsite.com/1/pctcutbacks/

This is very serious as national research shows that the availability of prescription goods is critical in encouraging Coeliac’s to stick to a gluten free diet – the only treatment available for the disease
I emailed Ann Sutton the CEO of the NHS Eastern and Coastal Kent PCT to share my concerns. I’ve copied the text below –

Dear Ms Sutton,

I understand that you are chairing a meeting to consider the reduction in range of prescription based gluten free foods used for the long term management of Coeliac Disease by PCT’s based in Sussex, Surrey and Kent.

My son Niall is 8 years old and has been diagnosed with Coeliac Disease for about 5 years. In that time the range of products available in supermarkets has improved but the quality of those products does not match the fresh gluten free bread and pasta that is available by prescription. As Niall is obviously at school the availability of a reasonable quality gluten free bread for his packed lunch is vital. (Eating school meals is too high risk a strategy so this is our only option.) WE already spend a significant amount of family income on very expensive gluten free products from supermarkets. This decision makes it worse.

Clinical advice shows that strict adherence to a gluten free diet is the only way to treat Coeliac disease. Research shows that the availability of reasonable quality prescription food means that more Coeliac’s maintain a gluten free diet, thus reducing the risks of other medical conditions that can arise from untreated Coeliac disease.

If you have any doubts, I would suggest obtaining some long life gluten free bread and trying to eat it. It is more like cardboard than bread.

To summarise my key points are

• The types of food that are included in the list are designed to be as unattractive as a cost saving rather than palliative measure.
• Shop sold bread is not as good and commonly costs at least £.2.50 for a small (400g) loaf.
• Lack of prescription products will encourage people to cease a gluten free diet.
• This policy hits poorer families disproportionately (I would like to see a diversity impact assessment and that that takes vulnerable peoples needs into account)

I hope that you can feedback the results of the meeting. In any event I would be grateful if you can advise me of the best contact to obtain reports, DIA’s and minutes of the original decision to reduce the list of products available, as I would like to make a request to see them under the Freedom of Information Act.

I appreciate that these are difficult times but I feel that the list of products has been curtailed without regard to patients’ needs. For what it is worth, I support the approach of not prescribing biscuits etc.

I’m sure the Committee will have seen it but I have attached a PDF published by Coeliac UK that sets out clearly the need for good quality prescription based gluten free food.



Many thanks


Andy McGrath

Extract from Coeliac UK

Health risks linked to gluten ingestion include poor growth in childhood, osteopenia,
osteoporosis, infertility, the development of other autoimmune disorders, and malignancy,
particularly lymphoma. Coeliac disease is unique in that a specific, effective treatment is
available in the form of lifelong exclusion of gluten from the diet. Those who adhere strictly
to a gluten-free diet can lead full, healthy lives and are protected from the development of
the health risks associated with the untreated condition. It is crucial therefore, that people
with coeliac disease can obtain gluten-free foods to satisfy their needs.
People with coeliac disease have varying requirements for gluten-free foods depending on
their age, gender, occupation and lifestyle. A wide range of specially formulated gluten-free
products is available on prescription and easy access to these is vital to promote strict
dietary compliance.

A recent survey of 1,000 adults with coeliac disease undertaken by Nutricia Dietary Care
and SHS International found that the availability of gluten-free foods on prescription aids
dietary compliance. Of those respondents who received gluten-free foods on prescription,
37% reported that they adhered strictly to the diet, 33% rarely lapsed and 19% lapsed only
occasionally. Importantly, 37% said that the availability of foods on prescription would aid
compliance. Clearly, a variety and easy access to a range of gluten-free foods on
prescription are important aids to compliance.

Bella Italia

I saw on the Glten Free Message Board that the Bella Italia chain www.bellaitalia.co.uk offer gluten free pasta and pizza. They are a chain restaurant and have a large number of branches including several in central London. I rang and checked first and booked. We went to the restaurant near Leicester Square as we'd been to the British Museum (very poor for gluten free snacks). We ordered a gf spaghetti bolognaise for Niall. Fortunately the pasta was quill shaped which is easier for an 8 year old to deal with in public. He ws really pleased to get pasta in a restaurant that was no fuss. The rest of the family enjoyed their meal and it was reasonably priced too. So overall, a success!

France (again)

Just got back from 2 weeks in the Dordogne in a mobile home. We had no real GF problems at all. Predominantly self catering does make life easier, there is no doubt and this is familiar to many GF families. We used a roof box on the car and took a fair amount of groceries with us (breakfast cereal and that sort of stuff) We also used an electric coolbox which managed to keep GF fresh bread frozen until we could put it in the freezer when we reached our destination. This worked really well. We also put in some Sainsbury Pork and apple sausages (I think). They were the best GF sausages from a supermarket that I have tried.

We did eat out very successfully in Le Bugue and Sarlat with restaurant staff seeming to understand the GF issue. Niall had steak hache and also a couple of very French omelettes.

On the shopping front we had a very good choice of fresh local produce and a modest shift in the Euro exchange rate even softened the cost. (France is still really expensive compared with a couple of years ago.

We sacrificed the family principles and had a McDonalds on the way back with the staff being really helpful and putting the burger inside a Marks and Sparks roll provided by us.

Another good trip and now back to the grindstone!

Restaurants - Leon and Las Iguanas

We've tried a couple of new restaurants recently. The first was Leons situated at Bluewater (and elsewhere) http://www.leonrestaurants.co.uk/ The menu clearly states what is gluten free and there is a relatively wide choice including main courses and deserts. Worth a try!

The second one is Las Iguanas next to the Festival Hall on London's South Bank. (Again part of a chain so lots of different locations) http://www.iguanas.co.uk/ The menu is clear on the GF options and offers a reasonable variety of choice.

Have a look at the web sites and see what you think. Both worked well for us.

Marks and Spencer Break and Cake

We've all been terribly busy so I haven't updated this for too long. There has been a lot going on in the gluten free world!

Last week we tried Marks and Spencer gluten free fresh bread and burger rolls. Niall thought they were the best breads that he had tried so we fully recommend them. It was a family barbeque so we all tried the Marks and Spencer gluten free chocolate cake. This was really rich and nobody would have known it was gluten free.

Just as a matter of information, we also had Marks chorizo and also pork and bramley sausages both of which were great and also gluten free.

Dr Schar Breakast Rolls

Having gone to the South of France, the Dr Shar breakfast rolls are now on sale in our local Morrisons under the Dietary Specials brand. Makes me feel less guilty about croissants for the rest of the family and Niall really likes them!

South of France

Just spent 3 weeks in France, largely close to Frejus. Plenty of meat and fresh fruit so mo real problems. Tended to search for kids menus that included omelette or steak hache. Life as Niall is older is a lot easier as he eats a wider range of food which meant choosing gluten free options was easier.

Used the search facility on the Dr Schar website and identified that the Le Clerc supermarket in St Rapael did gluten free stuff. Brought some Dr Schar breakfast rolls that were really good.

Only major in issue in France appeared to be that a large amount of ham has barley malt sprayed on it so that's one to watch!

Gluten Free Fish and Chips

We visited the Paragon Fish Bar in Birchington. They have a small restaurant area and do gluten free fish and chips. (Chicken and sausages too). Very friendly staff and the whole family enjoyed it. The restaurant can be found at 100 Station Rd, Birchington, Kent. (Ideal after a day at the nearby Minnis Bay.)

Camping in France

Just got back from the Loire. Had a really good week. Lots of self catering so gluten free was not much of an issue. Many of the larger French supermarkets do not carry GF stuff. However the Cora Hypermarket in Blois does have a range of Schar GF products. The Schar website lists sellers around the world and is worth checking before you go. http://www.schaer.com/en/points-of-sale/

As in the past, we not had any problems with french sausages and steak hache. There does seem to be a lot of prepacked ham with barley malt extract as an ingredient.

Sainsbury and Coeliac

I've been really impressed that Sainsbury don't sit on the fence as far as their own brand food is concerned. They are using a symbol to positively say that items are suitable for coeliacs. This takes a lot of the guess work out of food labelling and makes them better than the other large food retailers. Nice one!

Lunch at La Tasca Bluewater

Had a quick Spanish tapas meal at La Tasca. The server and chef were very clued up on gluten free issues and the menu listed which items were gluten free. Didn't try it but this also included orange and walnut cake which was gf. Well recommended with a suitably wide choice!

Odeon Cinema Pick and Mix

Took the kids to see Bolt 3D. Highly recommend the film! The pick and mix was really impressive as each type of sweet had an ingredients list together with an allergy advice panel. This made choosing very easy!

Legoland Windsor

Last summer, we had a very positive experience at the Pit stop Cafe at Lego land with the staff understanding GF issues and being able to provide a GF omelette and chips. All in all a good day out.

JD Wetherspoons

Noticed that their web site has a downloadable gluten free menu. http://www.jdwetherspoon.co.uk/food-and-drink/

Not sure I'd take the kids but it's useful to know.

Rochester Farmers Market

Most sausages in the UK contain gluten. There are some available in supermarkets that are gluten free. At our local farmers' market, they sell a wide range of really high quality gluten free sausages. They are available on the Web http://www.englishsausages.com/ and they are well worth a try. They do a real mixture and some are gluten free and some are not. You can clearly see on the web site which are which!

Thoughts on Supermarkets and gluten free

Many of the large supermarkets in the UK sell gluten free food. These are often branded "free from" or something similar. Our local Tesco and Morrisons sell a good range of bread, biscuits, cereal, pasta and cakes. Sainsbury do the same but also offer a variety of frozen food such as ready to cook pizza.

The frozen pizza is always handy to keep and gluten free jaffa cakes etc means that Niall doesn't feel left out at parties etc. The Black Farmer sausages sold at Morrisons are another good quality product and gluten free. (Most UK sausages contain wheat.)

Coeliac UK produce a handbook that lists gluten free products (or ones which have an acceptable amount of gluten). Sometimes you can go gluten free just by changing brands e.g. Tesco Cornflakes are listed as gluten free.

EU food labelling laws require cereals that contain gluten to be specifically listed in the ingredients list. (The allergy box is optional so you must check both unless the product is described as gluten free. The Food Standards Agency website http://www.food.gov.uk/ gives more details.

Rainforest Cafe

We tried the Rainforest Café earlier this year. We booked over the Internet and left a comment that Niall was on a gluten free diet. When we arrived, the staff were immediately aware that gluten free was an issue and were careful to go through the menu. The menu actually specified which meals were gluten free. Niall settled for sausage and mash. This restaurant has had mixed reviews but we enjoyed it. Rainforest Cafe The atmosphere was great for the kids.

Coeliac Disneyland Paris

We have spent the last 5 days at the My Explorers Hotel. This is a child orientated hotel run by Thomas Cook. It is not the sort of place adult only parties would want to stop but is very good for kids - a swimming pool with flumes, ball park, indoor play area etc.

The hotel provides a continental breakfast. They offer a gluten free option with some breakfast gluten free cake/bread. We took Rice Krispies with us. The hotel also offered a buffet option which provided enough gluten free scope. The food was ok but not particularly inspiring. The staff were all very helpful and I’d recommend the hotel for this sort of trip with kids.

We also tried the buffet option at the Dreamcastle hotel (which was next door) and had a much better choice. They also offered to get the chef to come out if we wanted to check any ingredients. (Also recommend the Sancerre on the wine list.)

In the Theme Parks themselves we only tried the Cowboy Cookout in Frontier land. It offered ribs and fries. This was the worst service, value for money meal I have had in my life. My advice to anyone would be to leave the park for lunch and go to Downtown Disney!!!!! It would also probably be quicker as the queue for the food outlets in the park was worse than all the rides.

In Downtown Disney we booked and ate at Mickey's Diner. They offer a gluten free kids meal option - plain cod and fries. The meal with the Disney Characters there was a real success and even I thought it was good.

We also ate at the Rainforest Café – again with a very good experience. The kids enjoyed it. Niall had omelette and chips, which he enjoyed a lot. It was lunch time and not busy so the kids could look at the fish in tanks and enjoy the jungle scenes etc. It was a real contrast compared with eating in the Park.

Although we didn’t try it, there is a McDonalds in Downtown and the burgers (not buns) are gluten free at present.

Next to the Santa Fe hotel, there is an Esso petrol station that sells ham, cheese and salads (with croutons but packed in separate sachets). It also worth remembering that the steak hache (beef burgers) tend not to have cereal in them so they have always been our fall back in France.

Larger French supermarkets are also now offering gluten free products too. (Auchan and Carrefour in particular.)

All in all we had a good trip. The Coeliac issue was not too much of a problem. Next time we go to a theme park we must try and pick a quieter time!!!