Improving access to community palliative care for children and their families

Project overview

Naomi House and Jacksplace Hospices recognised that their local Community Children’s Nursing (CCN) teams did not have the capacity to support children in the community with life limiting conditions, alongside their already complex caseloads. This meant that families had fewer options about where and how their child could receive end of life care.

In 2024, Naomi House began working with Hampshire Hospitals Foundation Trust to pilot a joint role across the hospice and CCN teams. The pilot aimed to support the CCN Teams’ capacity and confidence in providing palliative and end of life care, enabling more children and families to get the support they need, in the place they want to receive it.

Outcomes

Fiona Gunner was employed as Clinical Nurse Specialist (Palliative and End of Life Care) across the hospice and CCN teams in Winchester and Basingstoke. She works flexibly across all settings to help provide a consistent, individualised and holistic approach to palliative and end of life care for children in the community.

This includes:

• symptom management
• keeping in touch with families
• initiating and reviewing Advance Care Plans
• developing and facilitating on-call rotas to support families to receive end of life care at home where possible
• linking all the agencies involved in a child’s care to enable collaborative working across settings - hospital, home, hospice
• taking part in Continuing Healthcare (CHC) review panels
• providing education and teaching about palliative and end of life care to professionals and families 
• referring families to the hospice as necessary.

Fiona has supported families to stay at home for longer, but also to assess when it is the right time to move to the hospice if this is their preferred place of care. By being an integral part of the families’ care and support, Fiona is able to guide them and link with the hospice to arrange a timely transfer.

The shared role has had a huge impact for children and families, improving equitable access to care in their preferred place. One family, for example, did not think they would ever be able to take their child home from the neonatal unit, but with this new model of collaborative support they were able to do so.

Key facilitators

Hampshire Hospitals Foundation Trust were keen to work with Naomi House to develop this role, and the pilot has had a clear positive impact for children and their families.

Challenges

As with any new role, everyone has slightly different ideas of its remit. There are a wide range professionals involved in children’s palliative care, so building relationships across teams and clarifying roles can take time.

Fiona has previously worked in a Community Children’s Nursing (CCN) team, but it is important to recognise that each team is different. These CCN teams already had resourcing challenges, so it was important to be sensitive when asking them to take on extra responsibilities for end-of-life care.

The role will become permanent in January 2026 (following a two-year pilot). Naomi House is working alongside the ICB to consider the development of similar posts across the locality.