Around 20,000 Irish people are affected by Crohn's disease and ulcerative colitis, yet public awareness of these conditions remains low and services for those affected are often inadequate, a major new report has shown.

Crohn's and ulcerative colitis are known collectively as inflammatory bowel disease (IBD). They cause inflammation and ulcerations of the small and large intestines. There is currently no cure for either condition and treatment usually involves drug therapy, and if this fails, surgery.

Both conditions can cause moderate to severe reactions, such as abdominal pain, diarrhoea, nausea, vomiting and weight loss. Other symptoms can include joint pain, eye inflammation and skin problems.

According to the report, Gut Decisions: Leading change to improve the lives of people with Crohn's and colitis, recent research by the Irish Society of Gastroenterology revealed a number of service gaps for patients. For example, there is a lack of specialist IBD nurses nationwide, a lack of access to gastroenterology specialists and long waiting times for tests.

"Some 60% of centres highlighted a lack of specialist gastroenterologists as a key barrier to optimal services. One in three people wait longer than one year to see a specialist in Ireland and over 50% did not get a diagnosis within the first 12 months of onset of symptoms," the report said.

There is also limited access to psychological treatment, despite the fact that these conditions can have a major impact on quality of life and mental health. In fact, the report notes that those affected have a lower quality of life than the general population ‘across all dimensions of health'.

"Not surprisingly. Those with more active disease experience the greatest reductions in quality of life. However, even people without physical symptoms suffer from distress, anxiety and fear," the report said.

It pointed to findings by the European Federation of Crohn's and Ulcerative Colitis Associations (EFCCA), which revealed that almost half of people affected have lost their jobs, or have had to leave work, because of their illness.

"The fluctuating nature of Crohn's and colitis means that people with these conditions have a lower rate of participation in the workforce than the general population - they are unemployed or under-employed due to the condition," the report said.

According to the EFCCA findings, 77% of Irish people have had time off in the past year due to their condition, with 59% stating that they had five or more days off.

"Of particular and sometimes overlooked significance is that the conditions are often diagnosed in adolescence or early adulthood, which can impact educational attainment as well as career selection and thus socioeconomic status and income," the report stated.

Meanwhile, the report also expressed concern about the incidence of these conditions in children. It pointed out that the incidence of new paediatric cases has increased three-fold since 2000 and an estimated 450 children are currently living with IBD. More than 100 new cases are diagnosed in children here every year.

The report makes a number of recommendations aimed at improving the lives of people with these conditions, including:
-The development and implementation of a national strategy for Crohn's and colitis, aimed at delivering the highest standards of care to those affected
-An assurance that every patient has ready access to a multidisciplinary team to allow for timely referral, diagnosis and treatment. This will require more specialist IBD staff, such as gastroenterologists and nurses
-An improvement in the public's understanding of these conditions, particularly in workplace and educational settings.

"With the incidence of Crohn's disease and ulcerative colitis increasing in children and young people, it has never been more important to ensure that we take action to plan and develop specialist services to meet the current and growing needs of those affected.

"By ensuring optimal care is in place, we can enable people living with these conditions to fulfil their potential," commented Patricia McArdle, chairperson of the Irish Society of Colitis & Crohn's Disease (ISCC).

For more information on the ISCC, click here