News and events - February 2012 eXG

Dr Chris Steele MBE and his son raising awareness

Our Health Ambassador, Dr Chris Steele MBE and his son, Andrew took part in a number of radio interviews to help us raise awareness of the need for better diagnosis, particularly in the families of those with coeliac diseaseA condition where a person is unable to eat gluten as it makes their body attack itself. .

Dr Chris’s son Andrew is a 400 metre runner and Olympic hopeful and he spoke alongside his father about his experience of living with a parent with coeliac disease and being tested for the condition too. 

Both Dr Chris and Andrew did a number of radio interviews including BBC 5 Live, BBC South West, Tay FM, Pure Radio, Cheshire FM, BBC Radio Bristol and Sunrise Yorkshire. A number of these have now been uploaded to our website and you can listen to them here.

In addition to radio interviews, there have been articles on websites and in newspapers including the Sunderland Echo, and  Manchester Evening News and we are also looking forward to pieces appearing in the Leicester Mercury, Surrey Comet and Cambridge Evening News. Thank you to all the case studies who came forward and offered to be interviewed to help raise awareness.

Dr Chris was really pleased with how it all went and said: “I must congratulate you on creating this very clever campaign to get family members tested, and using my son as an example especially in the year of the London Olympics. A brilliant campaign idea - well done!”

Prescriptions update

Oxfordshire is the latest area to fall under scrutiny in a bid by the NHSNational Health Service to save money through prescription cuts.

NHS Oxfordshire opened a consultation last month asking for feedback on their proposal to remove all gluten-freeWhen a food has less than 20 parts per million (ppm) of gluten so it is safe for people with coeliac disease to eat. prescriptions for adults and children in Oxfordshire. As well as the cost of glutenA protein that is found in the cereals wheat, barley and rye. -free food standing at 2-4 times higher than its gluten-containing counterparts, Coeliac UK is concerned for those who do not live within easy reach of one of the main supermarkets and so may find access to gluten-free food very difficult.

We have met with the Primary Care Trust responsible for the proposal, who have assured us that as yet, no decisions have been made and they are open to suggestions. We hope to work with them to find a solution that saves money without jeopardising gluten-free prescriptions.

You can make your views heard by completing and submitting the consultation questionnaire which can be found at here or by calling 01865 334638. The deadline has been extended until 2 March. More information can be found on our website.

Getting ready for Awareness Week: The Gluten-free Challenge

We’re counting down to Awareness Week and we’re hoping you’re getting ready too!

The Gluten-free Challenge runs from 14 – 20 May and we’re asking the nation to go gluten-free for the week and get involved. 

There are a number of activities and things you can do to help us raise awareness and we’re keen to get you on board.  You could:

• ask a friend or family member to take on the challenge of following your diet for a week
• make sure your local eateries know about the demand for gluten-free by going out for dinner with friends and family and all ordering gluten-free options
• hold an information stand in your local area and talk to people about your condition and the challenges you face
• take part in Come Dine With Me Gluten-free and take it in turns with friends and family to cook and shop gluten-free
• attending an event held by one of our supporters such as the National Trust for Scotland or HF Holidays
• and much more!

Awareness Week packs are being put together as we speak, so order yours and read more information on how you can get involved here.

Call for volunteers

2012 sees the relaunch of our Cost Project, following its success in 2009 and 2010 and we will again be searching for volunteers across the UK to take part.

The volunteer-led project will look at the cost differences between gluten-free and gluten-containing foods in supermarkets and the results will help us to understand the cost of living life gluten-free. This comes at a particularly important time as we hear of increasing numbers of patients having their gluten-free prescriptions restricted, forcing them to rely on supermarkets.

The project will be rolled out nationwide and we are looking for a host of volunteers to take part. It will involve recording the weight and cost of around 15 products in local supermarkets and can be carried out over a period of time, at leisure.

At the end of the project the results will be analysed and published. In previous years the project has shown that on the whole, gluten-free food costs around 2-4 times more than equivalent gluten-containing food.

If you are interested in taking part or would like more information, contact volunteering@coeliac.org.uk, quoting the ‘Cost Project’.

Help us raise awareness with the media

A case studyA person who offers their story to the media as a real example of living with coeliac disease. is someone who works with us to tell the story of what it’s like to live with coeliac disease and help us raise awareness.  Could you be one?

All you would have to do is complete our form giving as much details as possible, and if your story is chosen by the media, then you may need to speak to a journalist over the phone about your experiences of living with coeliac disease. 

Very often the media are quite specific about the kind of story they’re looking for, so it helps if you can give as much detail as possible and send us a photo too.

To see more on the case studies we already have on the website, click here.

Social media

Don’t forget that the gluten-free debate continues online, where we encourage conversation about the things that matter most to you and post useful information of our own.

If you want to join in then find us on Facebook or follow us on Twitter. Alternatively, if you want to see our selection of videos concentrating on coeliac disease and the gluten-free diet visit our YouTube channel.

Campaign Network

The Coeliac UK Campaign Network is growing stronger every month with more and more Members getting involved to help make a difference for people with coeliac disease on the gluten-free diet.

Our campaigns focus on improving choice in local restaurants, raising awareness in local GPGeneral Practitioner, or local doctor surgeries, working with catering staff at hospitals and schools, and improving access to gluten-free foods on prescription.

If this is something that you would like to get involved in you can find more information here or email us at campaigns@coeliac.org.uk. 

British Sandwich Week

Help us to give the gluten-free sandwich a voice in British Sandwich Week with The Gluten-free Sandwich Challenge!

We want our Members to design the perfect gluten-free bacon sandwich so we can get real exposure for the gluten-free diet with the British Sandwich Association. We will be asking you for recipes each month to help us highlight the need for more gluten-free sandwiches. 

The next competition is for a bacon sarnie so get your entries in for a chance to feature on lovesarnies.com, as well as winning a prize provided by Coeliac UK. 

Send your entries through to campaigns@coeliac.org.uk all of which will feature on the Coeliac UK website.

Member story of the month

A massive thank you to everybody who submitted inspirational stories about their 2012 New Year’s resolution.

It was fantastic to see so many people trying so hard and succeeding in making their changes of choice. This month’s lucky winners are Marie Newbold and Mandy Clinch who win a healthy hamper from Hale & Hearty and a pack of cheese, tomato and red onion Little Savoury Tarts courtesy of Honeybuns, respectively. You can read their stories here.

For February’s Member story of the month competition we’re asking you to tell us your positive gluten-free Valentines stories. Whether your partner cooked you a perfect meal or you visited a restaurant that made the day even more special by ensuring that your meal was right for your diet without you even having to ask.

Fill in our online form by Friday 24 February for your chance to win!

Allergy & Free From Show 2012

Coeliac UK has again teamed up with the newly rebranded Allergy & Free From Show to offer unlimited FREE tickets to all Members (worth £10 each).

The show, which will be taking place on 18 - 20 May 2012 at Olympia’s brand new West Hall, London, will be packed with even more Free From features. Sample the latest gluten-free foods, enjoy cookery demonstrations, chat with Coeliac UK staff and get advice from Coeliac UK dietitians.

This year we are also delighted to be running a new workshop on the Saturday afternoon entitled; ‘Campaigning for people with coeliac disease: Awareness Week, the Gluten-free Challenge’.

Get the dates in your diary and access unlimited free tickets for you, your friends, family and colleagues via their website.

Media Update

National

Since the last eXG pieces have been published in both national daily newspapers such as The Times, The Mail on Sunday’s You Magazine and The Daily Telegraph and in national magazines including, Natural Health and Beauty, Runners World, Juno, Foodies, Best, Woman's Weekly, Living Etc, Handmade Living, Prima, Delicious, Health and Fitness Magazine, Psychologies Magazine, BBC Easy Cook Magazine and Sainsbury’s Magazine.

Catering and food trade media

We are seeing more pieces covering coeliac disease, the rise of gluten-free food, the new gluten-free labelling laws including interviews with Sarah Sleet, Chief Executive of Coeliac UK and the results of the Coeliac UK Gluten-free Chef of the Year Competition which was announced at the end of November.

Articles have been recently published in Caterer and Hotel Keeper, Food Manufacture, Food Trade Review, Marketing Week, British Baker, Natural Products, Fry Monthly, Ooh Magazine, Essential Café and Food and Drink Network UK.

At the start of the year and the introduction of the new labelling law for gluten-free food we submitted an article for the Craft Guild of Chefs on the legislation which was picked up by a number of trade media to help get the message out there to the hospitality industry.  

Regional media 

Following the launch of the consultation by the Oxfordshire PCTPrimary Care Trusts - the body responsible for the NHS at the local level e.g. Surrey PCT which is proposing the complete removal of all gluten-free food on prescription there has been much activity in the regional media surrounding this story. Two articles and letters to the editor have been published in the Oxford Mail as well as a piece in the Oxford Times. Sarah Sleet was also interviewed by BBC Radio Oxford and by Banbury Sound. The Oxford Mail articles were also on their website where they attracted a large volume of comments.

Other coverage has been included in: The Herald, Northern Echo, Hertfordshire Mercury, Norwich Evening News, Northampton Chronicle & Echo, East Anglian Daily Times, Bury Free Press, Express & Star – Wolverhampton, Sheffield Star, Yorkshire Post, Gloucester Citizen and Stockport Express.

So lots going on and we are hoping more articles will be appearing across the media in the run up to this year’s Awareness Week in May.

Events

Coeliac UK Local Voluntary Support Groups often have events around the country, so why not see what is going on in your area?  See our events page.