Aim of the service
To improve care for people with intestinal failure and make sure that care is consistent around Aotearoa New Zealand.
What is intestinal failure?
Intestinal failure is when a person can’t get enough nutrients through their intestines, usually because of a problem with the bowel. These problems include
- Something blocking the intestines for a long time
- Damage to the intestines from swelling
- Having a lot of the intestines removed
- Being born with an intestine problem
Someone might have any of those problems but not have intestinal failure. Intestinal failure is defined by someone needing intravenous nutrition (IVN) – a fluid containing amino acids that is given through a tube into a vein.
Getting the right treatment for intestinal failure is important to keeping a person healthy. Some people can go from needing IVN to eating normally, which improves their quality of life.
Intestinal failure in adults
Intestinal failure in adults is classified by the type of care needed to treat it.
- Type 1: Short-term failure, such as after surgery – This can be managed in a hospital ward or as an outpatient.
- Type 2: Medium-term intestinal failure, usually from infection. Patients need IVN to stay alive for more than 20 days.
- Type 3: Long-term intestinal failure, from an ongoing condition. This type of intestinal failure is usually stable, and patients are managed at home.
Intestinal failure in children
The categories above aren’t used for children because it is hard to tell how long children’s intestinal failure might last. Some tamariki, especially with short bowel syndrome, can improve as they grow. Others develop long-term intestinal failure. Because of the nutrients growing babies and children need, IVN support is usually required for a long time.
About the National Intestinal Failure and Rehabilitation Service
The NIFRS was created to improve care and treatment outcomes for people with intestinal failure. The service works to strengthen local and regional clinical networks and coordinating care processes around the country.
What the NIFRS does
- Keeps a register of all patients with intestinal failure to collect data. This helps doctors understand patient outcomes and improve treatment.
- Started and updates a referral process for patients with intestinal failure. These referrals mean most patients are treated by a local care team and can stay closer to home during treatment.
- Pushed for a shared care model of treatment to help patients and clinicians communicate better. This builds partnerships between patients, their families, and healthcare staff.
- Wrote national standards to make sure all patients with intestinal failure get the same level of care.
- Built a clinical network to help share knowledge about intestinal failure and rehabilitation.
- Organises research and collaborates with international researchers.
- Maintains the Paediatric International Intestinal Failure registry with Starship Hospital.
- Creates resources to help patients and their whānau to understand what intestinal failure is.
The NIFRS supports quality care and outcomes through these activities.
- Using ehealth systems to link patients with specialists.
- Giving information to regional and national clinical teams about the different parts of intestinal failure rehabilitation.
- Developing standards to assess patient outcomes.
- Helping patients to get intestinal transplants and caring for them afterwards.
- Making sure good education and resources is available to regional healthcare providers.
- Being a point of contact for clinicians who need support managing patients with intestinal failure.
- Providing a care continuity model so patients get the right kind of care quickly.
- Managing the registry of people with intestinal failure and making sure that information is used properly.
- Sharing treatment processes for people with long-term intestinal failure to help them recover and return to eating food normally.
Standards, guidelines and pathways
The NIFRS guidance for children and adults is hosted the Starship Clinical Guidelines site. The web-based format allows the service to update advice as knowledge evolves.
Papers and reports
Patient information about intestinal failure
Find out about Paediatric information and resources for IF (Starship)
North American Society For Pediatric Gastroenterology, Hepatology & Nutrition (goes to another website)Find out more information about research, education, clinical practice and advocacy for Pediatric Gastroenterology, Hepatology and Nutrition in health and disease.
Find out more information about Clinical Nutrition and Metabolism for clinicians and the public