Specialist unit for Intestinal Failure badly needed in our health service
Consultant Gastroenterologist at St James’s Hospital and Irish Society for Clinical Nutrition and Metabolism (IrSPEN) Director Dr Cara Dunne sets out current services for Intestinal Failure in Ireland and the case for urgent development
Intestinal Failure (IF) in its most severe form is when patients are unable to eat or digest food or water in sufficient quantity, and must receive total parenteral nutrition (TPN) to survive. TPN provides nutrition in liquid form through a catheter or needle inserted into a central vein in the chest – resulting in the need for highly specialised care.
Dr Cara Dunne, Consultant Gastroenterologist at St James’s Hospital and Irish Society for Clinical Nutrition and Metabolism (IrSPEN) Director
It is most often caused by short bowel syndrome, which occurs when people have had half or more of their small intestine removed for a variety of reasons. IF also may be caused by digestive disorders, such as Crohn’s disease or chronic idiopathic intestinal pseudo-obstruction syndrome, which causes the bowel to malfunction, or occasionally from the effects of radiation therapy to the abdomen.
Most patients’ can be managed at home using home parenteral nutrition (HPN), however each year, between 80 and 100 patients in this country develop severe acute IF, which lasts for more than 28 days, and multiple hospital admissions may be required. In the home setting, the major risk of HPN through an implanted central line is infection, which may be associated with severe sepsis with possible life-threatening risk.
These patients are highly complex and their optimum care requires an experienced multidisciplinary team approach. The lack of a dedicated Intestinal Rehabilitation (IR) Referral Unit for adults in Ireland is an anomaly when viewed against Northern Ireland, the UK, across Europe and developed healthcare systems worldwide – all of which have dedicated national services for this cohort of vulnerable patients with very particular healthcare needs.
For example, Belfast City Hospital operates a 12 bed IF specialist national referral unit for a population of 1.6 million. Specialist units (both secondary and tertiary) that meet the commissioning criteria by the NHS also are established in Scotland, Wales and England.
In Ireland, a specialist unit for children was established in 2000 at OLCHC in Crumlin, under the Lead of Professor Billy Bourke. However there is no equivalent specialist service for adults with IF who need HPN.
This situation is unacceptable, the health service has a duty of care not just for children, but for all patients with intestinal failure, and the quality of outcomes and economic model is inarguable. Although IrSPEN has advocated for this disparate cohort of patients from all parts of the country over several years, it is now a time for dedicated action to address the very clear existing shortcomings that undoubtedly impact on the risk of mortality and major morbidity in a highly vulnerable group.
Using international comparisons it is estimated that at least 12 avoidable deaths could be spared per year in Ireland as a result specialist care, though I would suggest that the figure is even higher.
An IrSPEN report in 2013 acknowledged that there were examples of good practice and high quality care, however important deficits were identified in the coordination, resource planning and clinical governance of HPN /IF for adult patients.
It found that these deficits put HPN patients at avoidable risk, and should be addressed without delay.
Further to this, a 2016 survey of patients found an alarmingly high rate of complications within 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.
Of concern were the findings that only 20% of HPN patients audited received recommended long-term monitoring as per European nutrition guidelines designed to prevent the development of complications. This is clearly a cause for significant concern.
Due to the lack of documented information of high quality on intestinal failure, I have in conjunction with IrSPEN President Surgeon Professor John Reynolds established a national database of IF patients.
The will help gain a greater understanding of this illness, the significant complications, and to record relevant clinical details of the presentation of disease and the treatments received. This will help us to plan services for the future.
At this time, IrSPEN will shortly be submitting a detailed plan to the HSE recommending a dedicated integrated specialist facility at St. James’s Hospital, supported by at least two regional hubs, in Cork and in Galway.
The proposed structure would require a minimum of eight acute beds in a dedicated unit, sufficient to manage an inpatient caseload of approximately 50 patients per year, of which 10-12 would be likely to involve complex cases (a length of stay of 140 days per year) and 36-38 simple cases (length of stay 26 days).
This would serve 50% of the national demand for specialist care, and would need to be expanded within 3-5 years to meet the full national demand for specialist in-patient care. The proposed ‘hub and spoke’ model is based on proven models in the UK and Europe.
The are several reasons for the proposed development at St James’s Hospital, a key factor being existing collaboration with the national paediatric service at Crumlin, and being on the same campus as the National Paediatric Hospital.
The level of funding required to establish the Unit is relatively modest at under €4m per annum.
However, the net cost would be less due to an offset of savings in emergency admissions and long-term treatment costs.