The Kentown Children’s Palliative Care Programme is a bold programme to ensure that every child and family gets care and support when and where they need it, based around their own unique needs, so they can make the most of every precious moment together.
The programme, funded by The Kentown Wizard Foundation, is a community focussed children’s palliative care programme in North West England covering Lancashire and South Cumbria. The Kentown Children’s Palliative Care Programme offers a unique approach to families, bringing expert nursing to children at home, together with respite care, social care and support with information and sign-posting.
Along with delivering the right care to families, when and where they need it, The Kentown Children’s Palliative Care Programme aims to raise awareness so families know what help is available locally. It will support families to access specialist listening and signposting support and find out more about housing, financial, benefits and legal advice and support grants they may be entitled to.
Who is part of the team?
Specialist Palliative Care Nurses
There are five nurses, each covering an area of Lancashire and South Cumbria. The nurses will use their knowledge and expertise in the care and management of a defined caseload of children with palliative care needs.
Family Support Workers
Family Support Workers will work across Lancashire and South Cumbria. They will provide emotional, social and practical support to children and their families such as driving families to medical appointments and organising activities for siblings. They will be supported by a manager who will also take on a small caseload to ensure geographical coverage.
There are two coordinators covering the region. Their role is to reach out into their community, linking families with children’s palliative care and other services in the region as well as with the national services provided through the Together for Short Lives Family Support Hub and Rainbow Trust Children’s Charity.
Day to day support for the programme will be delivered by a Kentown Programme Manager, employed by Together for Short Lives. A key aspect of their role will be to bring the programme team together regularly to share good practice and learning. They will also ensure that all data collection requirements are met to inform the national evaluation.
A Programme Board (“the Board”) has been set up to oversee the effective and efficient delivery of the Kentown Children’s Palliative Care Programme. The Board comprises the following:
- Andy Fletcher, CEO, Together for Short Lives
- Zillah Bingley CEO, Rainbow Trust Children’s Charity
- Dr Helena Dunbar, Programme Owner, Director of Service Development and Improvement, Together for Short Lives
- Anne Harris Director of Care Services, Rainbow Trust Children’s Charity
- Mala Langdon, Director of Finance and Resources, Together for Short Lives
- Dorothy Sherratt, Independent member
- Tracey Bleakley, Independent member
- Margaret Ingram CEO, Kentown Wizard Foundation (Observer, non-decision-maker)
Edge Hill University will lead the evaluation of the Kentown Children’s Palliative Care Programme. The aim of the evaluation is to explore the impact made by the programme on the lives of children with life limiting conditions and their families living in the region.