Crossed Grain November 2021

SUPPORTER NEWS | 4 Coeliac UK, 3rd Floor Apollo Centre, Desborough Road, High Wycombe, Bucks HP11 2QW. A charity registered in England and Wales (1048167) and in Scotland (SC039804) and a company limited by guarantee in England and Wales (3068044). www.coeliac.org.uk facebook.com/CoeliacUK 0333 332 2033 @Coeliac_UK youtube.com/UKCoeliac generalenquiries@coeliac.org.uk www.coeliac.org.uk @CoeliacUK dietitian@coeliac.org.uk DISCLAIMER All information is supplied in good faith and is believed to be correct at the time of going to press but Coeliac UK is not responsible for any errors. No correspondence will be entered into. Get in touch We always love to hear from you! So send your feedback and ideas to publications@coeliac.org.uk . Or contact us via phone (10.00am-4.00pm, Monday to Friday), email or social media for any other enquiries. Coeliac UK in Scotland With St Andrews Day ( Latha fèill Anndrais sona dhuibh! ) almost upon us, our Devolved Nations lead Tristan Humphreys visits Scotland at the start of November to meet with key stakeholders including local group members, officials and staff at the Royal Hospital for Children and Young people in Edinburgh. We’ll keep you updated with our progress in the region on social media and on coeliac.org.uk You could win £10,000 “Take a chance on the Christmas Raffle – you could be a lucky winner just like me! The prizes are incredible and taking part is so easy, but more importantly the money raised will make a real difference to Coeliac UK and to people like you and me who rely on their support and services to live well, gluten free.” Dr John Kay, Spring Raffle winner Play online now at www.coeliac.org.uk/raffle or call the Raffle Hotline on 01628 511708 by 15 December. *Over 18s only, T&Cs apply. Concerns about gambling too much? Visit begambleaware.org Support our Christmas Raffle today and you could win our £10,000 jackpot or one of over 100 other great prizes. Coeliac disease Coeliac disease is a serious auto- immunecondition,affectingaround1 in every 100 people. People are born with the genes that predispose them to developing the disease. Once the condition is triggered, their body’s immune system attacks its own healthy tissues in response to eating gluten, a protein found in wheat, barley and rye. It can be diagnosed at any age and is a lifelong condition thatneedscontinualmanagement. Symptoms and their severity are wide ranging but can include bloating, stomach cramps, diarrhoea, constipation, extreme tiredness, persistent mouth ulcers, anaemia and neurological symptoms such as loss of balance and co-ordination. [2] Currently there is no cure for the condition and the only treatment is a strict gluten free diet for life. Inmost cases, thiswill allow the gut to heal, but neurological damage can only be haltedandmaycauseongoing issues. Despite being common, around 6 in 10 Scots living with coeliac disease have yet to be diagnosed. This translates to over 30,000 people in Scotland living with, and suffering avoidable harm due to undiagnosed coeliac disease. [1] Unfortunately, delays in diagnosis are common and considered a significant barrier to improving patient outcomes. This can result in the development of significant neurological damage: on average, patients with neurological Over 3O,OOO SCOtS at riSk frOm undiagnOSed COeliaC diSeaSe Researchhas revealed therearestill more than30,000people acrossScotland livingwith undiagnosedcoeliacdisease . [1] Thesepeoplearenotonly likelysuffering fromunexplained symptoms,butarealsoat riskofserious long termhealthproblems like osteoporosis , neuropathy, infertility and in rarecases, smallbowelcancer . [2] symptoms are diagnosed ten years later than those patients with gut symptoms. [3] It takes an average 13 years from onset of symptoms for an adult to be diagnosed. [4] That’s more than a decade of potentially feeling ill, not knowing why, missing work, missing momentswith familyand friends, trips backand forth to thedoctorsorworse. Misdiagnosis is also a major challenge.Roughly1 in4peoplewith coeliac disease have previously been misdiagnosed with irritable bowel syndrome (IBS) despite the fact that NICE guidance recommends a test for coeliac disease before any diagnosisof IBS isoffered. [5] References [1]WestJetal , Incidenceandprevalenceofcoeliacdiseaseanddermatitisherpetiformis in youngpeopleacross theUnitedKingdom. Internal report.2021. [2] NICE,NG20Coeliacdisease; recognition,assessmentandmanagement.2015. [3] HadjivassiliouM,etal.NeurologicalDysfunction inCoeliacDiseaseandNon-CoeliacGlutenSensitivity.AmericanJournalofGastroenterology2016;111:561–7. [4] ViolatoM,GrayA.The impactofdiagnosisonhealth-relatedqualityof life inpeoplewithcoeliacdisease:aUKpopulation-based longitudinalperspective.BMCGastroenterol2019;19. [5] CardTR,etal.Anexcessofprior irritablebowelsyndromediagnosesor treatments inCel iacdisease:evidenceofdiagnosticdelay.ScandinavianJournalofGastroenterology 2013;48:801–7. [6] NHSwaiting times -diagnostics (pub.August2021),PublicHealthSco tlandhttps://www.publichealthscotland.scot/publications/nhs-waiting-times-diagnostics/diagnostic-waiting-times- waits-for-key-diagnostic-tests-31-august-2021/ Scotland leading the way! CoeliacdiseasePatientPathway In2018, anewnational evidencebasedpathway for coeliacdiseasewas launched across four health boards (NHS Lothian, NHS Lanarkshire, NHS Greater Glasgow and Clyde and NHS Tayside). It was funded by Scottish Government’s Modernising Patient Pathways Programme, and co-produced in partnershipwith key stakeholders including Coeliac UK, people livingwithcoeliacdiseaseandclinicians.Thedietetic ledpathway commenced in 2018 and delivers early diagnosis, early intervention and support, so people can selfmanage their conditionwithmonitoring via community pharmacy.The pathway has been such a success that plans are inplace to rollout thepathwayacrossScotland. Gluten free foodservice (GFFS) Access togluten freestapleproductsonprescriptionsplaysacrucial role in managing coeliacdisease. In recognitionof this, theScottishGovernment launched theGFFS in 2015. The pharmacy led scheme enables all those with a diagnosis of coeliac disease to access gluten free bread and other staple products through their local pharmacy, freeing up GP time and deliveringmuchneededsupport to thosewith thecondition. www.coeliac.org.uk 6 in10Scots with coeliacdiseaseare undiagnosed peoplehave coeliacdisease averagewait fordiagnosis adultswith coeliacdisease misdiagnosedwith IBS Cost to the nHS By failing to target interventions appropriately, the NHS faces the steep costs associatedwith treating avoidable complications. Recurring GP appointments, management of osteoporosis and bone fractures, unexplained infertility, and even cancer treatmentareallmuchcostlier thandiagnosingcoeliacdisease. The good news is that the first step toward diagnosis is a relatively simple and cost effective one, a blood test which can be accessed viaa localGP.Withbetter recognition of the symptoms from healthcare professionals and the public,we can secure faster access to a blood test for those at risk. For themajority of patients, thediagnosiswillneed tobe confirmedbyagutbiopsysowealso need to improve endoscopy waiting times. For people with suspected coeliac disease any delay is particularlychallengingas thismeans keepinggluten, the very thingmaking them ill, in their diet throughout the wait time in order for the test to be accurate. Despite improvements in Scotland, these have been hit badly by covid-19. The number of people waiting more than the minimum 6 week target has increased by 29% compared with the same period in 2019. [6] We suspect from our own research that that figure isevenworse amongstpeoplewithcoeliacdisease. Under-diagnosis of coeliac disease needs addressing now. 13 years is too long. Such is the experience of those seeking diagnosis of coeliac disease that many talk, not of the disappointment of a diagnosis but, the relief of finally having an answer. Today, over 30,000 people across Scotland deserve that answer. Coeliac UK have been campaigning ondiagnosis since2015,andwe’llbe launchinganew initiativesoon.Go to www.coeliac.org.uk for the latest news. To find out how you can support us email Tristan.Humphreys@ coeliac.org.uk 1 in 1 OO 1 in 4 This work follows the publication this September of Holyrood magazine’s annual Health of the Nation edition, which this year featured a double page spread on the challenges of diagnosis of coeliac disease in Scotland. The publication is read by around 3,000 policy makers , including Scottish MPs and Members of the Scottish Parliament and provides a great opportunity to communicate directly with Scottish power brokers. It’s the first time we’ve appeared in the magazine and represents the initial step in our ongoing Scottish Parliamentary engagement. We will be meeting with MSPs over the Autumn/Winter with a view to re-establishing a Cross Party Group to give voice to the Scottish coeliac community at the heart of the Scottish Parliament and look forward to building on the leadership Scotland has shown to date. We’re committed to supporting our community in each of the devolved nations, keep an eye out on our website and future newsletters for the latest.