A specialist unit dedicated to the treatment and rehabilitation of patients with intestinal failure (IF) is urgently needed, the Irish Society for Clinical Nutrition and Metabolism (IrSPEN) has said.

People with IF are unable to digest food or absorb fluids. As a result, they require intravenous supplementation, known as total parenteral nutrition (TPN). This provides liquid nutrition through a catheter or needle that is inserted into a central vein in the chest. This require highly specialised care.

While most patients can be managed at home, every year, 80-100 patients develop severe acute IF, which lasts for more than 28 days. In such cases, hospital admission is required.

IrPSEN is submitting a plan to the HSE, which proposes the establishment of a new national specialist centre at St James's Hospital in Dublin, along with regional "spoke" services. It insists that this will reduce the number of avoidable infections, complications, and deaths among these patients.

According to consultant gastroenterologist at St James's Hospital and IrSPEN director, Dr Cara Dunne, the lack of a dedicated specialist intestinal rehabilitation unit for adults in Ireland is an anomaly when viewed against developed healthcare systems worldwide, including the UK and across Europe, which all have dedicated national services for these patients.

"A specialist unit for children was established in 2000 in Our Lady's Hospital for Sick Children, Crumlin (OLCHC). However, on turning 16, these patients, and others who develop IF, have no specialist adult service available.

"The failure to provide these standards for this complex group of patients has clear legal and ethical implications for the HSE, given that it is well proven that specialist units result in vastly reduced morbidity and mortality," Dr Dunne commented.

She said that IrSPEN's plan, which it will shortly be submitting to the HSE, recommends a dedicated eight-bed specialist unit at St James's Hospital. This would be supported by at least two regional hubs.

"The level of funding required to establish the unit at St James's is relatively modest at under €4 million per annum. However, the net cost would be less due to an offset of savings in emergency admissions and long-term treatment costs," Dr Dunne highlighted.

Sorcha McElchar (23) lives in Donegal and she has had IF since she was a child. She believes a specialist unit would make a big difference to her life.

"In Crumlin, the doctors and nurses knew my case very well and I was able to quickly get the expert care I needed. However, since I turned 16 I am dealing with many different people in different services and this has resulted in recurring infections and illness, which are largely avoidable," she explained.

Meanwhile, Alan Behan (28), who is based in Kildare, has been experiencing IF for the past two years and he goes abroad for some of his treatment.

"Every time I have a problem, I have to go to the Emergency Department. There can be a long wait and often I have to go back over my whole case and history from the very start again with different medical staff. It is both frustrating and also very risky. A dedicated unit would reduce infections and complications, which have a major effect on my life," he said.

IF can occur as a result of the removal of the small intestine, due to injury, surgery, blood clots, or ongoing digestive disorders such as Crohn's disease.

A survey of patients carried out in 2016 found an alarmingly high rate of complications in Ireland. It also found that this cohort of patients were being discharged from at least 21 different hospitals, none of which had the training, resources or specialist experience to meet international standards for IF care.

Commenting on this, consultant gastrointestinal surgeon and IrSPEN president, Prof John Reynolds, said the lack of a dedicated specialist unit is resulting in excessive illness, suffering and mortality.

"Treatment in a specialist unit has been shown to dramatically improve morbidity and mortality from IF. Using international comparisons, it is estimated that at least 12 avoidable deaths could be spared per year in Ireland as a result of specialist care, though I would say that the figure is even higher. Our health service has a responsibility to deliver this service to our patients," he insisted.

This issue was highlighted at a national conference, Repositioning Nutrition in Healthcare, which was organised by IrSPEN.