Sorcha Mc Elchar describes the challenges around care for adults with intestinal failure in Ireland, drawing on the first-hand experiences of patients in the country
Sorcha with the parenteral nutrition (PN) that she administers intravenously at home
Intestinal failure and the lack of specialist care
Intestinal failure (IF) is the inability of the gut to absorb enough, or any, water, macronutrients (protein, carbohydrate, fats) or micronutrients (vitamins and minerals). Intestinal failure can be categorised into three types depending on the severity.
People with severe intestinal failure are treated with intravenous nutrition, such as parenteral nutrition (PN). This is a nutritional feed that is formulated specially for the person’s specific nutritional needs and is administered through a central line catheter. Every year in Ireland, 80–100 people are diagnosed with IF, yet the Republic of Ireland is one of the only developed countries without a national adult intestinal failure unit. This means that adults living in Ireland with IF cannot receive care from a specialist team in their own country, and many must travel to the UK. This gravely affects their physical and mental well-being, making them feel alone and unsupported in their care.
In contrast, there is a well-established paediatric IF unit in Our Lady’s Children’s Hospital, Crumlin, which has been running since 2000. It has a specialist intestinal failure team that provides treatment and care for children and teenagers who were either born with IF or developed it later. Training is provided so the patient can go home on the PN. This training is carried out over six to eight weeks and is very thorough, covering everything from sterile technique, how to connect and disconnect the PN, care of the line, how to change the dressing using sterile technique and what to do if something goes wrong. Regular blood tests are taken to test vitamin and mineral levels, and weight is monitored to ensure the PN has correct formulation. When I was diagnosed with IF at Crumlin Children’s Hospital, my parents and I found this training a great comfort, despite the massive upheaval to our lives.
I was placed on PN at the age of 17, after many years of being unable to sustain a healthy weight owing to malabsorption. After a few weeks on PN, the change in my overall health was amazing. I had so much more energy, had fewer infections and I felt happier in myself. The training and care we received at Crumlin were first class, and the clinical health nurse was only a text or a call away if anything went wrong. Now I am an adult and attend St James’s. Although there is no IF unit, I am one of the lucky ones, as my gastroenterologist, Dr Cara Dunne, is very familiar with PN. Sadly, not every IF patient is as lucky, and their health and well-being suffer greatly because of this.
IF care in Ireland: the patient’s perspective
One patient from County Mayo was diagnosed in St Vincent’s University Hospital, Dublin, in 2017 at the age of 59. Prior to the diagnosis the patient was at Mayo University Hospital and Galway Clinic. Different antibiotics were administered and various stoma bags were tried to fit the patient’s extremely high output. After spending 10 months in St Vincent’s, the patient was diagnosed with type 2 intestinal failure and told that there was no specialist unit in Ireland to treat the condition, but that there were two in the UK. On 14 December 2017 the patient was transferred by air ambulance to Salford Royal hospital, put onto PN and given six weeks’ training on how to carry out the care at home. Now, unfortunately, the patient is required to make do with Zoom meetings, and travels back and forth to the UK for assessment and treatment, which adversely affects their health.
When asked what the biggest challenge is for an adult patient living with IF in Ireland, they answered: “Not knowing the outcome when I arrive at hospital. Trying to explain my medical history and background because it’s so complex and because the doctors and staff don’t fully understand it. I am petrified of picking up an infection in the line as it is very delicate and needs to be always protected and sterile. The dread of deadly sepsis is always lingering in my mind, and it has been emphasised that early diagnosis of that is vital.”
When asked what a dedicated IF unit in Ireland would do to help improve quality of life, they answered: “It would relieve my anxiety and depression I developed when I was diagnosed. All my medical records would be held at that centre. If I needed hospital admission I would be assured of good care. It would eliminate the need to travel to the UK for further assessment and treatment.”
Another patient was diagnosed with IF at the age of 50 after an operation in University Hospital Limerick (UL) in May 2012 to repair a small hole in the bowel near a stoma site. Unfortunately, the site got infected which resulted in another procedure 10 days later. Their stoma output was extremely high from that point onwards. They were given lots of Imodium and codeine to help reduce this, but it did not help, and they continued to have setbacks resulting in the insertion of a kidney stent in August 2012. They were sent home but failed to maintain or gain any weight.
In October 2012 they were told as an inpatient they needed to be on PN and that they could do this at home. The patient’s dietitian was their main point of contact concerning PN. A nurse was organised to visit the patient at home over about five days to train them and their partner on how to manage the PICC (peripherally inserted central catheter) line and connection. Already, the difference in training time is clear. From six to eight weeks in a specialist IF unit, compared to a mere five days as an outpatient.
When asked what the biggest challenges are for IF patients living in Ireland, the patient answered: “The biggest problem is not having someone directly linked to intestinal failure to discuss any issues or concerns I have about my condition; I can only discuss this with my dietitian who is not a specialist. She does her best for me under the circumstances and somehow manages to put in a lot of time and effort to make sure I am looked after. My dietitian is my lifeline when it comes to my PN, and she follows up on my blood tests every two months, as they can affect my diet requirements for the PN.
“My consultant was a general surgeon who operated on me in 2012, but they retired last year. My new one is a gastroenterologist who does not specialise in IF, so why am I seeing him when my bowel is less than 80cm long? I had to explain the need to sign off my PN bags every month as only a consultant can do this. I rely on my dietitian to keep me informed about my PN so that I can seek the right care. She gave me a letter to take to my appointment with the consultant requesting I be referred for a DXA scan and a liver ultrasound—the European Society for Clinical Nutrition and Metabolism (EPSEN) guidelines state this should be done annually. That just does not make any sense.”
When asked how a dedicated IF unit in Ireland would benefit care and well-being, the patient answered:“I would never have to hear how complex my case is, and that there is no specialist body to refer to when they are trying to figure out how to deal with my issues if I ever find myself in accident and emergency (A&E).
“The A&E staff need a dedicated phone line to call when people like me present themselves as an emergency. I am almost guaranteed to be kept in as a patient. I understand this completely—they cannot take risks. A dedicated IF Unit would free up beds in an already overflowing hospital. UL has the highest number of patients on trolleys in the whole country. I have experienced this personally. The last time was in October 2019: after three nights on a trolley, I finally got a bed in a ward, before going home on day five.”
The contrast is clear between care in a dedicated IF unit and care from doctors and nurses who—through no fault of their own—are not equipped to deal with the complexity of a patient with IF. For the physical and mental well-being of patients with intestinal failure, a specialist IF centre must be established in the Republic of Ireland sooner rather than later.
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