World IBD Day May 2019

World IBD Day 19th May 2019

World IBD Day is a global event which takes place on 19th May each year. It is intended to united people everywhere to raise awareness of Crohn's disease and ulcerative colitis, collectively known as inflammatory bowel disease. 

For World IBD Day 2019, the Irish Society for Crohn’s Disease and Ulcerative Colitis (ISCC) is delighted to launch our exciting new mobile App IBDWell, which will include a toilet geo-locator, 'no waiting' cards available in seventeen languages, health tracker, mindfulness exercises and more. The launch of the App follows a survey of our members to help inform the realities of living with IBD in 2019.

In Dublin, the Mansion House and the Convention Centre will join famous landmarks around the world by turning purple to mark World IBD Day. 

Let's celebrate past success

We are delighted to announce that our campaign for last year's World IBD Day #DoubleUp has been hugely successful. This campaign called for the number of specialist Inflammatory Bowel Disease (IBD) nurses to be increased from 14 to at least 28, to bring Ireland in line with international best practice.

As of May 2019 this number has increased to 26 which by any standards is a huge success! We are very grateful to Minister Simon Harris for making good on his commitment to increase the number of specialist IBD nurses and look forward to seeing appointments being made in the remaining few hospitals that still have no IBD nurse.  

A survey of service providers treating patients with IBD, conducted by the Irish Society of Gastroenterology (ISG), found that the lack of dedicated specialist nurses in Ireland was the greatest barrier to delivering patient care.

Over 40,000 people in Ireland are living with IBD, most of whom are diagnosed between the ages of 15 and 30. Furthermore, paediatric cases of IBD have increased three-fold in Ireland since 2003.

However, prior to the #DoubleUp campaign, Irish research showed that 45% of hospitals across the country had no specialist nurse treating IBD patients.

Most Irish patients are hospitalised within two years of diagnosis and more than half will eventually need surgery. Almost half of Irish people living with IBD have lost their job due to the condition.

Elsewhere on our website, our advice to anyone who is living with IBD and who feel that a flare is coming on, is to immediately get in touch with their gastroenterology healthcare team. Where available, the IBD nurse is the first person to contact and who can really help in getting the right treatment plan in place to get you on the road to recovery. 

The #DoubleUp campaign is urging the Government to, at a minimum, double the number of nurses in Ireland to treat IBD as currently access to nursing care is not the same for everyone. 

Every IBD patient deserves to have access to the care of a specialist nurse. The role these nurses play in IBD patients’ lives is incredibly powerful -  providing care and specialist advice on treatment and on living with IBD day-to-day. It’s an invaluable, cost-effective and readily available service and we owe it to the growing number of patients in Ireland to deliver better care through increased levels of specialist nurses.

Professor Colm O’Morain, Consultant Gastroenterologist at Trinity College Dublin and the Beacon Hospital, Dublin

Despite the efforts of all specialists working in IBD, there are several challenges that prevent patients in Ireland from receiving timely diagnosis and equitable access to specialised care and diagnostic tests.

The IBD nurse’s role has traditionally evolved to meet the demands of the hospital and is considered pivotal to the safe and timely delivery of care to people living with IBD, facilitating rapid access to care for symptomatic patients, providing education, counselling and drug monitoring, and acting as a point of contact for advice for patients.

Mary Forry, IBD Nurse Specialist, Beaumont Hospital Dublin

The Gut Decisions report 2015 is available here