People in Ireland living with bowel or intestinal failure (IF) experience a high rate of complications and this is 'unquestionably linked' to the lack of centralised, specialist care they receive, it has been claimed.
IF is a condition in which the bowel is unable to digest food or absorb fluids. Up to 100 Irish people develop it every year. The Irish Society for Clinical Nutrition & Metabolism (IrSPEN) has been calling on the Government to establish a national IF centre since 2013, however funding for this has never been made available.
According to IrSPEN, up to 12 avoidable deaths occur in these patients every year.
It highlighted a new study published in the Irish Medical Journal (IMJ), which found that 77% of people with IF experience at least one major complication as a result.
It said that it has been calling for an IF centre since 2013 and had ‘high hopes' for the development of an adult centre at St James's Hospital in Dublin in the 2018 HSE Service Plan.
However, the funding provided in this plan will only support a transitional service for paediatric patients from Our Lady's Children's Hospital in Crumlin, within the catchment area.
IrSPEN insisted that as a result of this, there will be no improvement in care for the majority of adult IF patients nationwide who need an experienced, multidisciplinary team within a specialist unit.
The IMJ study found that a high proportion of IF patients required emergency treatment, often for preventable complications.
According to the study's author, Dr Claire Donoghue of St James's Hospital, there is ‘a clear gap in services' and patients' needs are not being met.
"This study highlights the complex medical, nursing and nutrition needs of patients requiring home intravenous nutrition. At present, these patients are distributed in small numbers across many hospitals, which prevents an expertise being built up to cater for their needs.
"The solution would be to centralise their care in a handful of expert centres, resourced to help these patients thrive and maintain their quality of life," Dr Donoghue explained.
The results of the study were described as ‘very concerning' by consultant gastroenterologist and IrSPEN board member, Dr David Kevans.
"The results confirm that patients in Ireland fare less well than patients in countries with specialist centres such as Denmark, the UK and just a few miles up the road in Northern Ireland. It really is a national disgrace that we knowingly provide a system of care for IF patients that fails to meet even the minimum standards of care available in Northern Ireland and internationally.
"We estimate, based on UK data, that there's a minimum of 12 avoidable deaths each year and many more unnecessary complications due to the lack of centralised, specialist care," he said.
IF is most often caused by short bowel syndrome, a problem that affects people who have had half or more of their small intestine removed due to injury or surgery to treat conditions, such as trauma or mesenteric artery thrombosis. It can also be caused by digestive disorders, such as Crohn's disease.
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