Urgent need for specialist unit for adults with intestinal failure
The management of adult severe intestinal failure and home parenteral nutrition urgently requires a national specialist centre, according to IrSPEN.
Tara Horan reports
A DEDICATED SPECIALIST intestinal rehabilitation unit for adults is urgently needed in the Republic of Ireland, according to the Irish Society for Clinical Nutrition and Metabolism (IrSPEN), which is stepping up its campaign for a national specialist adult service.
Whereas the model of care for paediatric home parenteral nutrition (HPN) patients is well organised and coordinated around one national tertiary referral centre, there is no framework in place or national specialist centres for the management of adult severe intestinal failure and HPN in the Republic of Ireland.
“Although some funding has been provided to allow us develop the service for patients transitioning from the specialist paediatric unit at CHI, Crumlin, we urgently need the funding to establish a specialist tertiary unit with probably two regional centres as part of a ‘hub and spoke model”, said Dr Cara Dunne, consultant gastroenterologist at St James’s Hospital and CHI, Crumlin.
“Building on discussions held with the previous Minister of Health and the HSE by IrSPEN, Prof John Reynolds and Dr David Kevans (who have tirelessly advocated for a national unit), I will be leading the submission of a new business case this year seeking the relatively modest funding required to address the current situation without any further delay,” said Dr Dunne.
According to IrSPEN, each year, 80-100 patients develop severe acute intestinal failure (IF) lasting > 28 days and requiring parenteral nutrition (PN). These patients have highly complex needs that require specialist care in a dedicated unit which has the required expertise, resources and service configuration to provide safe, equi table care.
A specialist unit for paediatric patients was established in 2000 at Children’s Health Ireland, Crumlin by Prof Billy Bourke, consultant paediatric gastroenterologist. However, these patients have no adult service to which they can transition or which offers a similar standard of care for those over 18 years of age.
The lack of a dedicated specialist intestinal rehabilitation unit for adults is an anomaly when viewed against service provision in the North of Ireland, across the UK, Europe and developed healthcare systems worldwide, all of which have well developed national programmes.
“The absence of an adult intestinal rehabilitation service in the Republic of Ireland is contrary to all expert recommendations, all of which unequivocally support the need for national healthcare systems to establish dedicated intestinal rehabilitation units that meet specified minimum criteria for service configuration, staffing, governance and audit,” said Niamh Rice, director of IrSPEN.
A 2016 survey of patients on home PN found an alarmingly high rate of complications, averaging 2.86 admissions of 13 days each, whereas the international standard for a high volume specialist centre is between one and two per 1,000 days.
Due to the lack of documented information of high quality on intestinal failure, IrSPEN in conjunction with Dr Dunne, has established a database on patients who are diagnosed with IF.
“The aim of this is to help gain a greater understanding of this illness, the significant complications and record relevant clinical details of the presentation of disease and the treatments received by patients,” said Ms Rice. “The information obtained from the database can be used as a resource for management and it is hoped that all patients in Ireland will be entered into this registry. This will allow us to plan for services in the future”
IrSPEN is seeking support of colleagues around the country to participate in this patient register, as it will provide a more complete picture of the impact that the current gaps in care are having on patients.
World Home Artificial Nutrition (HAN) Day is held annually on October 15 to raise awareness of home artificial nutrition therapies. In the UK, an organisation called Patients on Intravenous and Nasogastric Therapy (PINNT) provides support and an online forum for patients on home feeding, but in Ireland, no such patient organisation currently exists. With this in mind, IrSPEN, in conjunction with PINNT, are planning to organise a meeting for patients and carers in Dublin when the Covid-19 restrictions are lifted.
“IrSPEN has been advocating for improvements in care of patients with complex nutritional needs since it was established in 2010. The lack of an adult intestinal rehabilitation service is inevitably resulting in excess morbidity and mortality based on studies comparing care in specialist versus non-specialist units internationally,” Ms Rice said. “Not surprisingly, a survey of home patients conducted by IrSPEN earlier this year indicated that the majority wanted more support and opportunities to connect with other patients on home nutrition support, which IrSPEN hopes to address in the coming year.”
Reference
- Bell A, Conway N, Courtney J, Kennedy K, Raubenheimer Z et al.
Point Prevalence of Adult Intestinal Failure in Republic Of Ireland. Ir Med J 2018 Feb 9; 111(2):688 http://imj.ie/point-prevalence-of-adult intestinal-failure-in-republic-of-ireland/
October 2020; Vol 26 No 8 51
