Written evidence submitted by Coeliac UK

Submission to Select Committee on Culture, Media and Sport inquiry on impact of COVID-19 on the charity sector

About Coeliac UK

• Coeliac UK is the charity for people with coeliac disease and related conditions and who are required to live without gluten for their health. For over 50 years we’ve been helping people with coeliac disease and other gluten related conditions to live happier, healthier lives. There is no other charity in the UK who supports this community.
• We do this by providing independent advice and support, striving for better gluten free food availability and funding research to manage the impacts of gluten and find answers to coeliac disease. Our aim is that one day no one’s life will be limited by gluten.
• Coeliac UK supports the community with help through the diagnosis process, giving expert advice, providing tools for newly diagnosed patients enabling them to self-manage and adjust to the gluten free diet so they can live a healthy gluten free life.
• We operate at both a national and local level and have over 60 local community groups who support out members and beneficiaries.
• We work closely with dietitians, gastroenterologists and others in the NHS to provide patients with the care and support they and their clinicians need.
• We fund campaigns to drive awareness and diagnosis of coeliac disease, and have developed an online assessment tool to support patients and GPs in the initial testing conversation.
• Our website received nearly 2 million unique visitors last year and is growing, and we currently have over 65,000 members and a larger base of donors and supporters.
• Research has a key role in the charity and we are driving innovation in diagnosis and management of the condition, to reduce the burden on the NHS.

Coeliac UK’s role in the Coronavirus Crisis

• Due to Coronavirus, people with coeliac disease are relying on Coeliac UK more than ever and we have seen a massive increase in demand for our services, with enquiries and calls for help increasing by 500%. Calls for help and support are not restricted to members only.
• Research based information and support has never been more important, and we are working with our networks of experts to guide our community with accurate advice.
• The charity is also uniquely placed with an extensive network within the food industry and we are helping our beneficiaries find gluten free food in new ways, to ensure they can continue to manage their gluten free diet, which is the only treatment for their condition, and thereby maintain their health.
• We have developed an easily accessible location on our website where all key information about coronavirus hub is available to all website visitors (www.coeliac.org.uk).
• We are currently working with DEFRA to gather data to support better provision of gluten free food for those who need it most. We have identified a group of vulnerable individuals who have no access to food supplies and for those offered and already in receipt of a food parcel, the contents have not been suitable for a gluten free diet. We are working with our food networks to support these individuals.
• Our community is struggling to understand their health risks and the Government guidance, and we are uniquely placed to deal with their concerns and worries.
• In most cases, diagnosis of coeliac disease involves two steps: first, a blood test which can be carried out by a GP, followed by endoscopy with biopsy. We are seeing queries around cancelled endoscopies and clinics – all non-essential in the current environment – but to that patient awaiting their diagnosis or in need of support, they can only turn to us.
• We have developed new dietetic services to plug some of these gaps and support those most in need, to reduce the burden on the NHS at this time.

We are pivotal to the gluten free community and have been working with the most vulnerable to ensure they can continue to access gluten free food through our volunteer networks and local support groups and managing their mental health through our peer to peer support programmes.

Impact of the Coronavirus Crisis on Coeliac UK

• We are expecting to see a 50% decline in our income (Total income 2019 Jan-Dec = £3,840,965) due to coronavirus. Our funding comes from membership fees, fundraising and commercial income through our food safety schemes, advertising and sponsorship.
• All of these income streams are in severe decline because of the crisis, as we see fundraising events cancelled, members unable to renew their subscriptions and the economic impact of the crisis affecting the commercial sector and its marketing budgets.
• We are endeavouring to maintain the provision of ongoing support and advice, to all our community, in whatever way we can.
• To try and bridge the gap, we have launched an appeal to our community, asking for their help to sustain our future and furloughed 30% of our staff. 
• We have also cut-back on other expenditure and cancelled or postponed future events, but we expect even with these measures and when all unrestricted reserves have been used, that we will see a significant shortfall.
• While we are seeing our income fall dramatically, demand for our help is at an all time high and we must keep going to support our community for whom the Government guidance on their risk of coronavirus is unclear.
• We are worried that without additional financial support from the Government we won’t be able to continue to provide our vital services at a time when we are needed most.

Recommendations for the Government

We support the calls of the National Council for Voluntary Organisations (NCVO) including:

• A ‘mobilisation’ fund for frontline charities and volunteers supporting the response to the coronavirus crisis, especially where they are alleviating pressure on the NHS or providing support to people suffering from the impact of coronavirus
• a ‘stabilisation fund’ for all charities to help them stay afloat, pay staff and continue operating during the course of the pandemic
• confirmation that charities should be eligible for similar business interruption measures announced for businesses by the Chancellor.

About coeliac disease

• Coeliac disease is a lifelong autoimmune condition where the body’s immune system attacks its own tissues when gluten is eaten (a protein found in wheat, barley and rye).
• This causes damage to the lining of the gut and means the body can’t properly absorb nutrients from food. Coeliac disease is not an allergy or food intolerance.
• The condition is common and affects one in 100 people, rising to 1 in 10 if a first degree family member has coeliac disease.
• However only 30% who have the condition have been diagnosed which means there are currently nearly half a million people in the UK who have coeliac disease but don’t yet know.
• There is no cure for coeliac disease and no medication. Strict adherence to the gluten free diet, for life remains the complete medical treatment.  Having coeliac disease requires significant dietary modification.
• Following a strict gluten free diet allows the gut to heal and reduces the risk of long term complications.
• Non-adherence to the gluten free diet is associated with an increased risk of long term complications, including osteoporosis, ulcerative jejunitis, intestinal malignancy, functional hyposplenism, vitamin D deficiency and iron deficiency.
• For children, non-adherence to the diet can have additional consequences including faltering growth and delayed puberty.
• These long term complications impact upon quality of life for the patient and treating these complications has financial implications for the NHS.