FREED FROM campaign
Our vision is simple, life with coeliac disease should be freed from the many restrictions, doubts, frustrations and worry that come from having a life long autoimmune condition.
Here you will find our seven FREED FROM campaign goals, for the next seven years.
1. Earlier diagnosis, so that people are FREED FROM suffering
There are currently around half a million people in the UK that have coeliac disease and yet still do not know it. Every day they could be eating a bowl of cereal at breakfast, a sandwich for lunch, or a plate of pasta for dinner and causing themselves damage, pain and suffering.
When someone eventually receives a confirmed diagnosis, they are more than likely to be well into their 50's. At present it is recognised that these people have had to wait on average, around 13 years from the first signs of their disease, to get this diagnosis.
Our pledge: to confirm a diagnosis for 250,000 more people by 2020 so that they are freed from not knowing what is causing their symptoms, discomfort, pain and suffering.
We know that the process for diagnosis of coeliac disease is well accepted and established within the NHS. We must therefore tackle the poor awareness amongst both the public and key healthcare professionals, particularly those in primary care, that can kick start the diagnosis process.
2. Parity in aftercare support, so that people are FREED FROM anxiety
Across the UK, the NHS is equipped to support those with coeliac disease. For example, following a diagnosis, most people will be referred to a dietitian for advice and help on how to adapt to a gluten-free diet. However, this is where the consistency in care and support often stops.
Some patients have regular access to dietetic support and advice, some will have ongoing monitoring of their condition involving blood tests and bone scans (DEXA) as appropriate, whilst many others are left to work it all out for themselves and simply advised to contact Coeliac UK.
Our pledge: we want nobody with coeliac disease to have to manage their disease alone. We will work to see that NHS support is the same nationwide, where access to dietetic advice and appropriate follow up blood tests and investigations are the same for all, no matter where they live.
In 2015, for the first time ever, NICE will publish guidelines that steer healthcare professionals supporting those with coeliac disease with the management of their disease. We will work to publicise the new guidance to ensure there is a level of support right across the UK that meets the recommended standards and promotes the take up of innovative and efficient ways to deliver this care.
3. Improve availability of gluten-free food, so that people are FREED FROM hassle
Popping into a supermarket, convenience store or local grocers to pick up some gluten-free items can still lead to a lot of hassle. Empty shelves where gluten-free products have run out of stock, limited range of gluten-free items to choose from and no gluten-free choice at all can often lead to many having to visit several stores to buy their shopping.
Currently 74% of those shopping for gluten-free complain of having to visit more than one store to pick up everything they want and need. It can present difficulties for the elderly and less mobile and leaves many of those with coeliac disease frustrated at the lack of provision.
Our pledge: we will challenge every retailer to stock a core range of staple gluten-free food across the UK, so that those that need to follow a basic gluten-free diet can do so with ease.
Finding gluten-free food in a large supermarket is getting easier, but when you visit a smaller store or convenience outlet it can be a lot harder. As one of the most important factors affecting whether someone is able to maintain their gluten-free diet, we want every store to stock a core range of gluten-free food that includes items such as fresh white bread, cereal, pasta and flour.
We are now making good progress towards meeting this goal, with our Gluten-free Guarantee initiative.
4. Further research, so that people are FREED FROM coeliac disease
Coeliac UK is the largest single funder of research into coeliac disease in the UK and over the last eight years we have commissioned research to help to improve our understanding of the condition and the production of gluten-free food.
We have awarded grants worth over £1.3 million to medical researchers to understand the genetics and immune processes involved in the disease, as well as laying the foundations for a potential vaccine.
We have also commissioned research to provide us with information to underpin our services, to help people who are managing a gluten-free diet and the prevention of cross contamination in commercial kitchens.
Our pledge: to raise £1 million over seven years to fund further research into coeliac disease.
Over the years we have been fortunate enough to contribute significant funding into research coeliac disease. However, with so many unanswered questions there is much more we need to do. Therefore, every penny raised through this campaign will only be spent on research. Donate to the campaign.
5. Reasonably priced food, so that people are FREED FROM premium prices
When you buy gluten-free substitute food, one of the things you will notice is that the price is often several times more expensive than a gluten containing equivalent. This can be three to four times as much and therefore affects whether many people are able to stick to a gluten-free diet.
Our pledge: gluten-free food should not cost three to four times as much as gluten containing food. Quite simply, we want to see retailers and producers ask for a reasonable price so that everyone can access gluten-free substitutes.
Producing gluten-free food requires careful sourcing of ingredients and a controlled manufacturing process and testing so that we are all confident that what we are eating meets the recognised gluten-free standard.
Whilst we understand that this requirement may add a small amount to the cost of gluten-free food, it is not right that those needing to buy gluten-free food feel they cannot do so because of premium prices. Having to pay an average £20 extra every time you shop for food starts to add up. This can be quite a problem for those that must follow a gluten-free diet and struggle to make ends meet.
6. More top brands labelled gluten-free, so that people are FREED FROM doubt
The introduction of gluten-free labelling has, in recent years, made buying appropriate food simpler. However, we often find some manufacturers can change the ingredients from time to time and this can mean something may suddenly not be suitable for a gluten-free diet.
We also know that cross contamination occurs and the use of the 'may contain' statement can vary. It is possible that mainstream brands could put measures in place and label their products gluten-free so that those with coeliac disease and following a gluten-free diet can enjoy their popular products as well.
Our pledge: to have ten of the top 20 food brands labelled gluten-free by 2020.
Choosing which food you want to eat and knowing it is gluten-free shouldn't be that hard. With new labelling regulations implemented at the end of 2014, labelling packages are now simpler with gluten-containing grains emphasised in the ingredients list (most likely in bold).
We therefore want to work with producers and retailers so that in the cases where no gluten-containing ingredients are used, they are produced in a way that allows them to be labelled gluten-free.
7. More gluten-free menu options, so that people are FREED FROM limited choice
Eating out with friends and family can be difficult, as there are often many establishments that do not overtly state whether they have gluten-free options on their menu. This often leaves people with a small choice of places that they feel confident eating out at, or running the risk that the restaurant they choose might not be able to prepare something without cross contamination.
At present they are just over 2,000 establishments in the UK that have Coeliac UK accreditation and meet standards that are audited by an independent company. This, out of a total of 450,000 places where you can get food out of the home, is just a drop in the ocean.
Our pledge: to have at least two gluten-free labelled options in each of the top 20 eating out chains.
In the last year, we have seen several high street chains take up our accreditation and are now in a place where they can offer safe gluten-free options on their menus that we check every year. This is a promising start and we want to see a wave of other establishments provide choices on their menus for those following a gluten-free diet.
If you would like to find out more about the FREED FROM campaign, please email [email protected].