A Norwegian perspective on palliative care

As part of our wider conversation to inform the development of our new strategy we will be publishing a series of blogs reflecting on what great children’s palliative care should look like in 2028, what needs to happen to get there and what Together for Short Lives’ role could be in achieving that. Today we hear from Sabine Kraft from the International Children's Palliative Care Network.

Frankly, and obviously, the utmost goal would be that there would be no need for paediatric palliative care, because science has found a way to heal these life-threatening and life-limiting illnesses. But, that would be like a fairy tale.

Realistically, I think every person in the UK should know that there are children and young people struggling with their life, living amongst them. For the children and young people, I would want them to be able to participate in all activities because society has developed more sensitivity towards them and their families. Facilities for these families, such as care, respite and children's hospices will be sufficiently available, and parents would be able to take time off work to look after their seriously ill children without worrying about their income.

Better funding and education

I would like science to have extra publicly financed budgets for research in paediatric palliative care. Universities would have seats for professors of paediatric palliative care and students could then participate in lessons and have them accepted as part of their study - in Social Work, in all social sciences, in care, in psychological and medical studies. Also I would love to see the subject of paediatric palliative care covered in schools, with students doing at least a project every school year at both the elementary and secondary level.

There would be equal access to paediatric palliative care, with people who need it being able to receive help through translated brochures and information leaflets, and paid translators readily available when help is needed.

I would like UK to have a 24/7 hotline for all questions and information about paediatric palliative care – specialised and professionally - free of cost. And finally, the paediatric palliative care offers would be well financed publicly.

Together for Short Lives role

This vision will all be possible because of the intense public work that Together for Short Lives does continuously to raise awareness. 

What do you think? 
Tell us what you think of this vision for Children’s Palliative Care by posting a comment below. You can share more detailed comments by completing this short survey. You can also submit your own blog to support this series by emailing emma.dixon@togetherforshortlives.org.uk

We are keen to hear from as many people as possible, so do share this blog with your stakeholders and networks. You can also engage with the conversation on Twitter, using the hashtag #forthe49000

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