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Ground-breaking children’s palliative care project launches in North West England to reach the growing numbers of children with life-limiting conditions

News and comment
  • The Kentown Children’s Palliative Care Programme has a bold long-term ambition to reach every family caring for a child with a life-limiting condition.
  • The project is funded by The Kentown Wizard Foundation, based in Blackpool.
  • It is a collaborative programme between Together for Short Lives, Rainbow Trust Children’s Charity and The Kentown Wizard Foundation.
  • The needs of children and their families are at the heart of this new project.

The Kentown Children’s Palliative Care Programme is a community focussed children’s palliative care programme in North West England covering Lancashire and South Cumbria. It is the first of its kind in the country.

The needs of children with life-limiting conditions and their families are at the heart of The Kentown Children’s Palliative Care Programme. The project offers a unique and community focussed model of care with three key elements: bringing together Nursing Care, Social Care and Information and Awareness, so families can easily access all the help and support they need locally, and in their homes.

The project will invest in building on established children’s palliative care and support services across the region, strengthening co-ordination and avoiding duplication to make life easier for families and in reaching more families. It was important that when shaping this new programme, commissioners, children’s palliative care providers and families were involved in the direction of the project.

By providing children and families with the support and care they need at home, families can focus their time making the most of every moment with their child, whether that’s for years, months or just days. 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 and can access listening and signposting support if they need it.

Oliver at home with Holly, his mum and older brother

Specialist Children’s Palliative Care Nurses will work across Lancashire and South Cumbria. Each nurse, employed by a different NHS trust within the region, will use their knowledge and expertise in the care and management of a defined caseload of children with palliative care needs.

A team of Family Support Workers will work across Lancashire and South Cumbria to  provide in-depth emotional, social and practical support to children and their families such as driving families to medical appointments and organising activities for siblings.

Family Service Coordinators will cover the same region. Their role is to reach out into their community, raising awareness so families know what help is available locally, helping them to access listening and signposting support, to find out more about housing, financial benefits and support grants they may need and linking them with services both regionally and nationally.

Day to day programme operations will be delivered by Together for Short Lives and Rainbow Trust Children’s Charity.

When Oliver was born we very quickly learned that he has several different complex conditions meaning he has considerable healthcare needs… it was difficult to know which way to turn for the support we, as a family, needed. It was a real struggle to keep afloat day to day let alone navigate through the different sources of help available. This new service provided by the Kentown Children’s Palliative Care Programme together with Rainbow Trust and Together for Short Lives will transform the lives of families like ours by improving communication between the different types of support on offer. Time is so precious to families in our position so any service to help them to more easily get the support they need is very welcome indeed.

Holly, Mum to Oliver

To learn from this programme, to maximise impact and promote sustainability, strong evaluation is a vital and fundamental element of the programme. A team at Edge Hill University has been appointed to lead the three-year evaluation of the Kentown Programme, to assess and measure the benefits and changes arising from the Kentown programme and the longer-term impact the programme has for children with life-limiting condition and their families.

Oliver playing 'doctors' with his older brother

Margaret Ingram, CEO, Kentown Wizard Foundation, said: “It has been the foundation’s ambition for a number of years to provide funding that will have a significant and transformational impact on children’s palliative care within the UK. Today marks the launch of The Kentown Children’s Palliative Care Programme. The needs of the family are at the heart of this community-based model and it is our sincere hope that by adopting a holistic approach, this programme will make a real difference in the lives of the families it serves. Currently, within the UK too many children and young people with life-limiting conditions struggle to access the support they very much need and deserve. Through The Kentown Children’s Palliative Care Programme, Together For Short Lives and Rainbow Trust will work together to provide this vital support. We are delighted to fund such a ground-breaking collaboration.”

Zillah Bingley, Chief Executive of Rainbow Trust Children’s Charity said: “As a direct provider of support for families with seriously ill child we are delighted to be part of this transformational new programme which places the needs of children and their families at its heart. There is an urgent need to join-up care and support for families as they face the immense challenge of caring for a seriously ill child. They have been thrown into an unimaginably difficult situation, a world they never thought they would be in, so anything that can done to reach more families, co-ordinate services, avoid duplication and increase awareness of support available should be done. We are delighted to be working with Together for Short Lives and the Kentown Wizard Foundation to make families’ lives just that little bit easier.”

Andy Fletcher, Chief Executive of Together for Short Lives, said: “Today is a momentous day as we launch a bold new model of delivering children’s palliative care across Lancashire and South Cumbria, based around the unique needs of seriously ill children and families. The number of children with life-limiting conditions is rising, and too many families are not getting the vital care and support they need. We want to ensure that every family caring for a seriously ill child can access quality children’s palliative care, where and where they need it. The ambition of this exciting and innovative programme is to reach every family across the region, by bringing together nursing care and social care, alongside major investment in information and awareness.  We are delighted to be working with Rainbow Trust Children’s Charity in realising this bold ambition, and we extend our heartfelt thanks to The Kentown Wizard Foundation for investing in this transformative project.”

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