Introduction: A child/young person facing an Intestinal Transplant can be extremely difficult for families. It involves meeting a new team and hospital at a time when medical care of the child is challenging. An MDT approach has been demonstrated to benefit the family and help to ensure they are adherent to treatment and care. Working in partnership is essential to ensure children and young people receive the best care.

Our aim is to describe the strategies we have developed to meet the needs of our intestinal transplant families, children and young people.

Methods: Introducing families to our transplant MDT at the time of transplant assessment, ensuring they understand team members’ roles and responsibilities.

Giving families regular opportunities to meet with different members of the transplant team to gather information and ask questions. Provide families with information both written and verbal to empower and encourage them to participate in the discussions with healthcare professionals. Daily communication with the family is done in their own language via interpreters.

Establish links with the local support network early and ensure they are kept up to date with treatment and care plans. Eg Shared care consultant, community nursing teams

Support the parents to communicate with the nursery/school as appropriate. Discuss return to school plans and educational care plans to ensure the child/ young person can resume their education.

Behavioural contracts to establish families understand their roles and responsibilities.

Signpost families to support services e.g. Children’s Liver Disease Foundation, Multi Organ Transplant Support,

Family support team advice parents/carers on welfare benefits, housing issues and financial support in the form of grants available.

Investigate and discuss opportunities for respite and other support services available in the local area.

Summary: Feedback from families is that they feel part of the team looking after their child. They are able to confidently voice their opinions and concerns. Fostering a culture of parent and healthcare professionals working together is required to ensure children and young people’s needs are met.

Future Development: Further development of unit website, links for families to use prior to admission to orientate them to the unit and staff and development of apps.