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What does great palliative care look like?

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What should great children’s palliative care look like in 2028?

It’s a challenging question. Challenging for the families, children and young people we all support to look this far ahead. Challenging for many children’s palliative care services, operating in a tight and uncertain economic climate. And it’s also challenging for professionals working in the NHS, in social care and education with no additional funding in the Spring Budget.

But it’s the kind of question we must ask if we are able to think creatively about what might be possible to improve the quality of life and end of life care for children and young people with life limiting and life threatening conditions.

It’s a key question we’ve been wrestling with at Together for Short Lives as we begin a conversation today with members, families, young people, professionals, service providers and those with an interest in children’s palliative care to help shape our strategy from 2018 onwards. Our current strategy concludes next year and so we want to engage with members and stakeholders now to help shape and share in our future work.

We are approaching this with an open mind but already it strikes me that there might to be some key themes: How do we better join up, connect and orientate services and support around children, young people and their families? What is the role of data and information in better understanding, planning and delivering services? What are the new funding models and delivery models that reflect stronger collaboration and fully recognize the value of children’s palliative care? What are the tech advances that might revolutionize how care is managed, planned and accessed? How should Together for Short Lives listen and lead, what areas should we focus on where we can make a difference and add value to the work of others?

There will be many more questions, challenges and opportunities. But I want us to be bold and consider what a decade of difference might look like for children’s palliative care. And I also want families, young people, professionals, service providers and other stakeholders members to have a genuine stake in our work and have a shared ownership of our strategy.

You can share your thoughts and ideas with us and others in four ways:

  • Respond to our short survey here by sharing your thoughts on our key questions:  What does great children’s palliative care look like in 2028?  What needs to happen in order to get there? What could Together for Short Lives’ role be in achieving that?
  • Submit a short article or blog to us (500 – 700 words) which addresses the questions above – we would like to publish these on our website and publish them widely to encourage wider thinking or debate, please email
  • Share our engagement approach with your stakeholders and promote this link in newsletters and social media using the twitter hashtag #forthe49000
  • Join one of our forthcoming strategy meetings (which we will write to you shortly about) or invite us to one of your meetings or networks to discuss the strategy and the opportunities ahead.

We’ll be sharing regular updates on what we are hearing and also dedicating space at our conference to gather views but it’s important to me that this is a shared conversation, based on a shared commitment to improve the quality of life and end of life care for children and their families.

Barbara Gelb is the CEO of Together for Short Lives.

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