Transition hubs

Project overview

Tŷ Hafan knew they needed to do something different to support the increasing number of young people aged 17/18 that were in the hospice’s care.

While transitioning from children’s to adult services, young people and their families experience a range of challenges:

• It can be frightening to lose the familiarity, social support and emotional support of the children’s hospice, particularly in emergencies.
• The adult health and care system can be difficult to navigate as it is very different to the system for children.
• Young people with life-limiting conditions don’t always meet the criteria to access adult hospice services.
• Young people with a life-limiting conditions need support to gain independence as they grow older.

With the help of a grant from Together for Short Lives, the hospice was able to employ a full-time Transition Nurse as part of a pilot programme. 

The aim of this role is to provide holistic support to help young people and their families navigate the journey into adult services. Following the success of the pilot programme, the Transition Nurse is now embedded in Tŷ Hafan’s services.

Outcomes

The Transition nurse works with colleagues in adult services to review each young person’s unique needs and identify what their pathway into adult care looks like. The meeting includes:

• the Specialist Paediatric Palliative Care Nurse
• the Palliative Care Transition Consultant
• consultants from the relevant adult hospices
• the young person
• the young person’s family, depending on the young person’s circumstances.

Tŷ Hafan has also established Transition Hubs in partnership with local adult hospices. These are places where young people and their families can get wrap-around, psycho-social support. They allow young people and their families to access:

• music therapy
• complementary therapy
• peer support groups
• support and advice from agencies such as Citizens’ Advice and local housing teams.

The Transition Hubs are spread out over Tŷ Hafan’s geographical footprint, covering six Health Board areas. They take place in an adult hospice, but are run by Tŷ Hafan’s team – so young people and their families are meeting people they know, but in a new place.

Key facilitators

The first Transition Nurse at Tŷ Hafan was an existing member of staff who had worked on the hospice’s care team for 15 years. They had an excellent understanding of the issues involved in transition to adult services, and already had good relationships with the cohort of young people.

In Wales there is a Paediatric Palliative Care Transition Consultant who works part-time across all of Wales. They support transitions in palliative care for 14-25 year olds (including oncology patients).

Challenges

In the past, adult services have been reluctant to support young adults with long term life-shortening conditions. This might have been due to concerns about not being able to cope with the number of patients, or not having the knowledge and skills to care for people with specific conditions.

To overcome this, the Transition Nurse led bespoke teaching sessions for staff in adult services, about some of the conditions that are more prevalent in children’s hospices. Tŷ Hafan shared information about the number of referrals adult services can expect – usually only three or four per year.

Over time Tŷ Hafan has seen a positive shift in the willingness of adult services to engage with transition support.