Derian House Children’s Hospice has worked with the Central Preston Clinical Commissioning Group and Lancashire Teaching Hospitals to improve palliative and end of life care for children and families.
Derian House Children’s Hospice undertook a NHS England Exemplar project aiming to explore and create:
in-reach roles where hospice staff are based in a hospital
education and training for NHS colleagues about palliative and end of life care (including advance care planning across the integrated care system)
support for community teams to avoid hospital admissions.
Outcomes
Derian House’s advanced clinical practitioners now have honorary NHS contracts so they can provide in-reach expertise at Lancashire Teaching Hospital Trust. They are included in ward rounds, which means they are able to recognise and refer children and families who need hospice support as early as possible.
An alert system has been developed to help hospital staff identify families already known to the hospice as soon as they are admitted. This enables the hospice team and hospital to work together and improves continuity of care.
Overall, there has been an increase in referrals to Derian House and the profile of children’s palliative care in general has improved. There is now more information sharing between the hospice and hospital, and a greater number of avoidable admissions to hospital are being prevented.
Most importantly, there has been a benefit to children and families.
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"It felt like we lived at Royal Preston Hospital over the winter and to just have someone from Derian House there who knew [my child] was such a comfort.
When your child is in hospital you can feel very isolated and separate from the rest of the world. It was so nice to see a friendly face…
When we were discharged from hospital, having Derian House there for aftercare was such a lifeline.”
Parent
Facilitators, challenges and advice
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Key facilitators
Derian House has good relationships with the Hospital Trust, and the Commissioner is keen to drive forward the children’s palliative and end of life care agenda.
A peer support network has been developed which colleagues find helpful.
Challenges
The in-reach model works, but it takes time to get established. The hospice had to wait for the hospital to process the honorary contracts for the in-reach roles, and hospital staff needed time to get used to the in-reach practitioners being part of the team.
Staffing challenges can also affect how well the in-reach roles are embedded.
Tips and advice
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It’s essential to build contacts and speak to the decision makers. Approach commissioners with solutions - offer to make their life easier and help more children and young people to receive the care they need.
Ensure you are involved in discussions on service development at a regional level to enable your hospice to address the unmet need.
Future development
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Derian House plans to:
recruit for an in-reach Palliative Care Consultant post
increase the Advanced Clinical Practitioner Team
roll out the model to other Trusts (the hospice is already in conversations with Royal Manchester Children’s Hospital).
Training will be improved by developing a formal training needs assessment and further work around the provision for palliative care education and training is underway.
