‘I could never work again after I got sick, that really affected me’
Every year at least 80 people in Ireland develop acute intestinal failure.
BETWEEN 80 AND 100 people in Ireland develop acute intestinal failure (IF) on an annual basis.
IF occurs when a person’s intestines and bowel can’t digest food or absorb the fluids and nutrients essential to normal development.
The condition can be temporary or permanent and can happen from the removal of the small intestine due to injury or surgery, or through digestive disorders such as Crohn’s disease.
There are three kinds of IF; Type III is a chronic, irreversible condition that requires total parenteral nutrition (TPN) either administered at hospital or at home.
John O’Meara, a 62-year-old former truck driver from Dublin, has been administering TPN at home for several years.
When he was 48, he woke up in severe pain one morning and went to Connolly Hospital in Blanchardstown, where he was admitted.
John’s small intestine was removed because blood clots had caused it to stop working. He spent three months in hospital and several more months recovering at home.
He was put on TPN (administered through an IV) and other medication to manage an antithrombin III deficiency – a rare, hereditary blood-clotting disorder. He had the condition since birth but was never diagnosed.
John administers his TPN at home every night. If the line gets infected he has to go to an emergency department, where he said he fears further infections. He has had to stay in hospital about eight times since he first became unwell.
If you get an infection, it really knocks you back … You really, really dread going near A & E, you’ve a better chance of getting a full-blown infection in there than at home.
John said many medical professionals don’t understand his condition and that a specialist centre would make a big difference. He added that, because the condition is relatively rare, “you can’t blame” nurses and doctors for not knowing about it in detail.
“A specialist unit would be brilliant, you’d have specialist people there who are able to deal with it and know what the problem is.”
John has had fewer infections in recent years “touch wood”, and likes to keep active through DIY and fishing.
He said it’s important to stay busy as the most difficult aspect of his illness has been the fact he had to give up work as a truck driver.
“I had to leave my job, that’s one of the saddest parts of it. I loved my job. That really affected me, that I could never work again.”
The Irish Society for Clinical Nutrition & Metabolism (IrSPEN) wants a specialist unit for adults with IF to be established. The organisation says such a unit was overlooked in the 2018 HSE Service Plan, which only provides funding for a transitional service for paediatric patients from Our Lady’s Children’s Hospital Crumlin (OLCHC), within the catchment area.
“This offers no improvement in care for the majority of adult intestinal failure patients around the country who require an experienced, multidisciplinary team within a specialist unit – in line with international best practice,” IrSPEN said in a statement.
Thousands of people in Ireland have IF but it’s difficult to ascertain the exact number as there’s no specialist unit to collate data.
According to research published in the Irish Medical Journal recently, 77% of the 67 patients in the study experienced at least one major complication. The mortality rate of patients treated during the study period (April 2015 to March 2016) was 18% (12/67).
The study also showed that a third of people surveyed experienced a central line infection, which is largely preventable.
More than half of patients (54%) had emergency treatment and there was an average of 2.9 hospital admissions per patient, each lasting 13 days, adding up to a total of 38 days per patient per year. IrSPEN said this is far in excess of the complication rates reported by specialist centres in the UK and elsewhere.
Dr David Kevans, Consultant Gastroenterologist at St James’s Hospital and IrSPEN board member, said the results of the study are “very concerning and 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 intestinal failure patients that fails to meet even the minimum standards of care available in Northern Ireland and internationally.
Kearns said, based on UK data, there’s a minimum of 12 avoidable deaths in Ireland each year and “many more unnecessary complications due to the lack of centralised, specialist care”.
Complex medical needs
Study author Dr Claire Donoghue, who is also based at St James’s Hospital in Dublin, said the research “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.
“There is a clear gap in services and we are failing to meet 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.”
When asked about the services available to people with IF in Ireland, a spokesperson for the HSE said the organisation “is supporting the development of a transition service for patients in Our Lady’s Hospital Crumlin to St James’s Hospital in the form of a Young Adult Nutritional Support Programme”.
It is intended that this should form part of a phased approach to developing a more comprehensive intestinal failure service at St James’s Hospital. Further consultation is required with other major hospitals across the country, including wider consultation nationally regarding the best strategy for adults living at a distance.
“As the development of this service is critical, funding has been allocated to the Dublin Midlands Hospital Group in 2018 to progress the recruitment of a consultant gastroenterologist, clinical nurse specialist and part-time dietitian for the service,” they added.