Together for the 49,000 +
Help shape our strategy for children’s palliative care: What should great children’s palliative care look like in 2028?
Together for Short Lives wants to improve the quality of life and the quality of end of life care for children and young people with life-limiting and life-threatening conditions. We want to ensure that their families are supported, informed and empowered on their journey with their child.
That’s why Together for Short Lives has begun a conversation to engage and listen to families, young people, professionals, service providers and those with an interest in children's palliative care to help us develop our strategy from 2018 and beyond.
We’re calling this engagement: Together for the 49,000 + Help shape our strategy for children’s palliative care
A message from our CEO, Barbara Gelb OBE
You can read Barbara’s blog to launch our strategy engagement; inviting you to be part of the conversation to help shape our new strategy.
A decade of difference
It’s an opportunity to shape and share an agenda for the future to secure a better quality of life and end of life care for children with life-limiting and life-threatening conditions. We want to be bold and consider what a decade of difference might look like for children's palliative care, what great children's palliative care should look like, and what our role could be in helping make that happen.
Help shape our strategy
We want this engagement to be open, stimulating and ambitious. It will run over two phases: Phase 1 will run until 17th May and begin with broad top line questions; In Phase 2 (August – October) we will share an outline strategy with you for further comment.
We want families, members and all those with an interest in children’s palliative care to have a genuine stake in our work and have a shared ownership of the strategy.
We’d love to hear what you think
We want to hear from everyone with an interest in children’s palliative – families, young people, professionals, services, policy makers, funders and more. You can share your thoughts and ideas in four ways:
- Tell us what you think Together for Short Lives could do to effect change for children and young people by completing our short survey for families or our survey for professionals, services or other interested parties
- Submit a short article or blog to us which addresses the questions above. Please email us here
- Share our approach with your networks and promote the link in newsletters and social media using the twitter hashtag #forthe49000
- Look out for details of our forthcoming strategy meetings or invite us to one of your meetings to discuss the strategy.
Be part of the conversation
Over the next few months Together for Short Lives will be sharing your ideas, views and ambitions through blogs, newsletters and social media.
So far, we've gratefully received and published blogs by:
- Barbara Gelb OBE, Chief Executive of Together for Short Lives
- Dame Elizabeth Fradd, Patron of Together for Short Lives, and Vice President of Rainbows Children's Hospice, as well as Vice President of Nottingham University.
- Sacha Langton-Gilks, DD's Mum (17.11.95-14.8.12) & Lead Champion of The Brain Tumour Charity's Headsmart campaign
- Katie Boswell, Deputy Head of Charities for NPC
- Rachel Wright, Nurse, Writer and Mum
- Andrew W Lewis, Research Associate, University of York
- Mansi Shah, Co-founder, Happy Feet Foundation, India
- Sabine Kraft, Director, International Children's Palliative Care Network
- Zipporah Ali, MD, the Kenya Hospices and Palliative care Association
- Kenneth Pitch, Medical Director of the Pediatric Palliative Care Program, the CS Mott Children's Hospital in Michigan
- Rut Kiman, Consultant in Children's Palliative Care, Buenos Ares, Argentina
- Ross Drake, MD, from Starship Child Health, New Zealand
- Julie Ling, CEO, European Association for Palliative Care
- David Pastor, CEO, Claire House Children's Hospice
If you would like to submit a blog, please get in touch with us.
Keeping in touch
Please do get in touch if you have any queries, or if you have any ideas on how we can improve our engagement in developing a new strategy for 2018 and beyond. Email us here