The Arundel hospice director helping to add life to shortened years | Vicky Meets

• What is your background?

I’m a paediatric nurse and children’s community nurse. I’ve been nursing for 25 years and found my love for children’s palliative care 15 years ago. I’ve recently become the director of children’s services here at Chestnut Tree House, having previously worked here in an education role. My new role means ensuring the highest levels of care, at the hospice and also in our outreach work, as well as advocating for our children and their families.

• What does palliative care entail?

Palliative care is about living with a life-limiting illness. We provide short break respite provision here at the hospice, but we also enable children and their families to have days out; helping them to make memories and to enjoy time together. We think of it as adding life to shortened years. End-of-life care is a very small part of what we do. It’s often about the small things; having an ice cream at the beach, going to the cinema or swimming with a ventilator. A hospice is not a sad place. Children just want to be children; to play and participate. And palliative care is for the whole family. Each child at Chestnut Tree House has a key worker who supports them throughout their time with us. Key workers will liaise with other professionals and the family to ensure that everyone involved in the child’s life is working together. This also ensures that families have a constant person who they can ask questions and advice as and when needed. It is also about supporting the emotional, social and spiritual needs of the whole family. We do all we can to help all those closely connected to one of our children.

• Why are there greater numbers of children with life-limiting illnesses these days?

Because children are surviving for longer. Medical advancements have made a real difference and nationally there are now 86,625 children living with a life-limiting illness. But parents are dealing much higher levels of clinical complexity than in the past. Tragically, with some genetic conditions, you sometimes see siblings both facing deterioration and the need for increased medical intervention. It is so difficult for these families – the unpredictability of their children’s conditions can be so hard. Palliative care is vital for these families.

• What is your catchments area?

We’re one of only a few hospices for children and so while we are located just outside Arundel, we cover a huge area: all of Sussex and south-east Hampshire. We have the challenge of getting community nurses across three counties. We’re really trying to broaden our outreach work and to take much more out into the community.

• How are you funded?

Funding from central government is minimal. We depend on donations and fundraising and welcome any support.

• Where can we find out more?

Please visit our website at www.chestnut-tree-house.org.uk

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