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Programme supporting seriously ill children across the North West reaches one-year milestone

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Ruby and her family are one of the families supported by the Kentown programme

The Kentown Children’s Palliative Care Programme in North West England has reached its one-year milestone, supporting over 128 families across Lancashire and South Cumbria.

Launched with the needs of children with life-limiting and life-threatening illnesses – and their families – at its core, families have described the initiative as ‘transformative’.

The collaborative project, combining nursing care, social care and information and awareness is reaching the growing numbers of families with children and young people with life-limiting conditions in the region. By providing nursing, practical and emotional support to families and by signposting them to services in their communities and supporting them to access these, the project is reaching families more easily and quickly than ever before.

Funded by The Kentown Wizard Foundation, the ground-breaking programme comprises Rainbow Trust Family Support Workers, Together for Short Lives Family Service Coordinators and Specialist Children’s Palliative Care Nurses from five NHS Trusts across the region.

A two-year study is underway to evaluate the impact this new approach to palliative care is having on families.

Ruby and her family are one of the families supported by the Kentown Programme

Making a difference to Ruby’s family

Ruby, two, lives in Halton with her parents and two older sisters who are four and six.

Ruby has Pearson Syndrome, a very rare condition that usually begins in infancy and affects various parts of the body, in particular the bone marrow and the pancreas.

A Rainbow Trust Family Support Worker visits them every six weeks, helping them practically and emotionally and providing support to Ruby’s siblings Connie and Freya.

A Family Co-ordinator has been able to help them to access a free Centre Parc’s holiday and support locally in her community.

Nikki, Ruby’s mum, said: “Our Family Support Worker plays with the other children and we get to be a family together. Sometimes she takes my older daughters out for the day. I cannot explain how much of a difference she has made to us as a family. It has been transformative.”

The family were also able to enjoy a short, local holiday that was organised by the Kentown Family Co-ordinator: “We had an incredible time, it can be difficult for us to make plans with Ruby but we all had a wonderful time as a family. I am so grateful.”

A Kentown Nurse will soon be assessing how they can best support Ruby’s palliative care needs at home: “We are really grateful for the support,” Nikki said.

We set out with an ambition of reaching more families across the region than ever before, and after an incredibly successful first year, working in collaboration, I am thrilled to see the difference this programme is making to families in the region. Enormous thanks to The Kentown Wizard Foundation for their funding of this incredible programme

Andy Fletcher, Chief Executive of Together for Short Lives

Zillah Bingley, Chief Executive of Rainbow Trust Children’s Charity said: “This collaboration and new way of working has fostered fantastic relationships between the different teams and we are reaching families with seriously ill children earlier than we have in the past. We want to use this collaboration as an example across the country and are very grateful to The Kentown Wizard Foundation for funding this exciting and innovative programme.”

Rob Hezel, Chief Executive of The Kentown Wizard Foundation said: “After one year of the Kentown Support project, we are delighted to see the impact our funding is already having and continue to believe the programme can be a catalyst for a significant and transformational impact on children’s palliative care within the UK that is urgently required.”

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