CHILDREN’S PALLIATIVE CARE IN THE UK

Guest Blog by Barbara Gelb

I am writing this BLOG fresh (or not so fresh!)  from a TV appearance doing a virtual cycle ride from London to Lapland for a major Christmas charity appeal here in the UK.

The profile of children’s palliative care has never been higher, but there is still so much more to do to reach all of the UK’s 49,000 babies, children and young people with a life-limiting condition.

I heard from a young person just last week about the challenges that face her in life.   She spoke about the loss of professionals as she became an adult, but also of the loss of friendships as she was forced to drop out of school and university due to her deteriorating health.

It’s stories like this and those of the many children and families who have been filmed in the Little Stars series that inspire me to do all that I can to provide a voice for children with life-limiting conditions.

CHILDREN’S PALLIATIVE CARE IN THE UK

As the CEO of Together for Short Lives, I have focussed on eight key policy priorities for the coming year (http://www.togetherforshortlives.org.uk/about/policy_priorities).   I want every child and family:

–  To have access to palliative care in the setting of their choice  – 24 hours a day, seven days a week
–  To have access to palliative care services, including children’s hospices, which are sustainable and fairly funded.
–  To be able to get a short break if they need one.
–  To have services which are coordinated around them.
–  To have a smooth transition from children’s to adult’s services.
–  To have services that are safe and high quality.
–  To have appropriate emotional, practical and social support.
–  To receive help from the state to help with the financial costs of caring

There is a huge challenge ahead to make these priorities a reality in the UK.   There is an even bigger challenge to reach all the children who need palliative care around the world.  I am honoured to be part of ICPCN’s global efforts to make this a reality.

Editor’s Note: Please consider supporting Together For Short Lives policy priorities by making a donation to Together For Short Lives.

 

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