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.
WORLD Hospice and Palliative Care Day was on 10 October, and to celebrate and mark the occasion, the International Children’s Palliative Care Network (ICPCN) and local organisation Umduduzi – Hospice Care for Children, hosted the premiere of...
Those of us who work in children's palliative care all have one experience in common… seeing the sometimes surprised, sometimes sympathetic but more often the unmistakable look of shock on the faces of those who innocently ask, ‘So what work...
Little Stars: Accomplishing the Extraordinary in the Face of Serious Illness will be nationally broadcast in Turkey this year on TRT. The Turkish Radio and Television Corporation, also known as TRT, is the national public broadcaster of...
INTERNATIONAL VISION To live in a world where children’s palliative care is acknowledged and respected as a unique service, and every child and young person with life-limiting or life-threatening conditions and their families can receive the...
The Tasmanian Breath of Fresh Air Festival has officially selected Little Stars: Accomplishing the Extraordinary in the Face of Serious Illness in its 2015 Festival line-up. Little Stars tells the surprisingly life-affirming stories of young...
Guest blog from Sabine Kraft, Bundesverband Kindehospiz, Germany. Es war ein eindrückliches, unvergessliches Erlebnis, Lucy und ihre Familie an dem Filmtag zu begleiten. Lucy ist ein Mädchen, eine junge Frau, die eine starke Persönlichkeit...
"I continue to chase my dream of improving my chess game. I was recently chosen to attend the Level 4 Junior Master chess camp. This is the beginning of my dream to take my chess game up a level. I have also passed the first qualifying...
Little Stars has won Official Selection into Massachusetts Independent Film Festival. The Massachusetts Independent Film Festival is a worldwide event for truly independent filmmakers. The festival has screened films from all over America,...