Mum of two Elaine-Sarah Comerford is one of a number of people with intestinal failure whose lives are at an increased risk because of a lack of specialist care.
Elaine-Sarah, 32, a goldsmith from Waterford, spent 26 weeks in hospital last year, and each time she was admitted through the emergency department (ED).
“There are no specialists in Waterford, so I have to fight to be heard every time I go the ED,” she said.
“There are always different staff on call. Even when a team gets to know my condition the members move on after three months.”
Elaine-Sarah’s large intestine was removed during major surgery last year. She spent three months in hospital and missed Christmas at home with her young family.
She is now on total parenteral nutrition, which means she is fed the nutrients and fluids she needs through a line into a central chest vein.
“I live in Waterford but would rather travel to Dublin to get experienced care,” she said. “I am now living in the hope that a unit will be established in St James’s Hospital as soon as possible.”
The Irish Society for Clinical Nutrition and Metabolism says the lack of a specialist unit in Ireland is putting bowel failure patients such as Elaine-Sarah at serious risk.
The society has been calling on the Government since 2013 to establish a national intestinal failure centre.
Despite the high-level political support, funding to establish the specialist unit has not been provided.
The society says the high complication rates for people living with bowel failure is unquestionably linked with the lack of a specialised unit.
Almost eight out of 10 (77%) people with intestinal failure have experienced at least one major complication, according to a study published in the Irish Medical Journal.
According to international prevalence data, between 80 and 100 Irish people develop acute intestinal failure every year.
The condition can be temporary or permanent and can occur following the removal of the small intestine due to injury, surgery, blood clots, or digestive disorders such as Crohn’s disease.
There were high hopes that funding for a specialist eight-bed adult unit at St James’s Hospital would be included in the 2018 HSE Service Plan. However, the funding provided will only support a transition service for paediatric patients from Our Lady’s Children’s Hospital in Dublin within St James’s catchment area.
David Kevans, consultant gastroenterologist at St James’s, said the study showed that patients in Ireland fared less well than those in other countries, such as Britain and Denmark.
“It is a national disgrace that we knowingly provide a system of care for intestinal failure patients that fails to meet even the minimum standards of care available in Northern Ireland and internationally,” he said.
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