The Netherlands | ERN ERNICA

Intestinal Failure care in the Netherlands

Where is care provided?

Children and adults with intestinal failure are treated in specialised university medical centres. These centres provide multidisciplinary expertise in intestinal rehabilitation and parenteral nutrition.

Care for children

The following centres are recognised as expert centres for paediatric intestinal failure:

Erasmus MC - Sophia Children's Hospital (Rotterdam)
Amsterdam UMC - Emma Children's Hospital (Amsterdam)
Radboud UMC - Amalia Children's Hospital (Nijmegen)
UMC Groningen - Beatrix Children's Hospital (Groningen)

Care for adults

For adults with intestinal failure, specialised care is available at:

Amsterdam UMC (Amsterdam)
Radboud UMC (Nijmegen)
UMC Groningen (Groningen)

Your general practitioner or local hospital can refer you to one of these centres.

Psychological & Social Support

Living with intestinal failure can be challenging - support is available for both patients and parents to yelp you cope with the emotional, practical and social aspects of the condition.

At your treating centre, you may have access to:

Hospital psychologist
Social worker
Educational or school support for your child

Ask your treating centre which services are available locally.

In addition to professional support, many parents find it helpful to connect with other families who are going through a similar experience. Speaking to someone who has been in your situation can provide reassurance, practical tips, and help you find your way after diagnosis.

Your treating centre may be able to help you get in touch with other patients or parent support groups, so do not hesitate to ask them about available peer support opportunities. Relevant patient organisations can also be found at the bottom of this page.

Parenteral Nutrition (PN)

If your child needs parenteral nutrition, your care team will support you throughout the preparation and transition to home.

You can ask your centre whether a transfer nurse is available to help organise the practical aspects of going home.
PN is covered by health insurance in the Netherlands.
All necessary equipment and supplies are arranged through your pharmacy

Before discharge:

You will receive comprehensive training on how to safely care for your child at home.
Your child will only be discharged once parents and/or caregivers feel confident and are fully trained to manage PN safely.
If home care is needed, this will be arranged in advance.

Support is always available:

A 24/7 support line is available for urgent questions or emergencies, please ask your care team for the correct contact number.

Costs and reimbursement

In the Netherlands, most care related to intestinal failure is covered by health insurance.

Medical specialist care is covered by mandatory health insurance
Parenteral Nutrition and the necessary medical supplies are reimbursed
Additional support, such as extra care at home, may be funded through a personal budget (PGB), depending on your situation
Some additional costs (such as travel expenses) may be covered; however, this can vary depending on your health insurance coverage and income.

If you are unsure about what is covered, you can ask:

Your hospital social worker
Your insurance provider

School and education

Most children with intestinal failure can attend school.

Support may include:

Hospital schooling or online education during hospital admissions
Home or online teaching during recovery periods
Access to special education, if needed
Guidance and support for returning to regular school

Patient organisations

Connecting with other families can be very helpful. Sharing experiences with people who understand your situation can provide support, practical advice, and reassurance.

In the Netherlands, you can join the following peer-support groups:

In addition to Dutch groups, there are also international communities where you can connect with families worldwide: