We welcome pivotal new guide on caring for seriously ill children

Together for Short Lives has welcomed an important new guideline which calls for compassionate care for all children and young people with life-shortening and life-limiting conditions. The guideline, ‘End of life care for infants, children and young people: planning and management’, has been drafted by the National Institute for Health and Care Excellence (NICE). It aims to set out the care and support these children need and how it should be provided.

Importantly it recommends that children and families should be allowed to choose where they die - at home or at a children’s hospice if hospital is not their preferred choice. And the guideline promotes the importance of compassionate care through physical contact, such as ‘touch, holding and massage’ alongside good pain and symptom management.

The new guideline is targeted at planners, funders and providers of care to children with life-shortening conditions and will apply in England, Northern Ireland and Wales. NICE are consulting on the draft until 12 August. Together for Short Lives will be responding to the consultation on behalf of the children’s palliative care sector. We urge children and young people with life-shortening conditions, their families and the professionals and services who care for them to tell us their views.

Welcoming the new guide, Barbara Gelb OBE, Chief Executive of Together for Short Lives, said:

“Hearing the news that your child is likely to die young is devastating. It’s an incredibly distressing and confusing time. For the families of the 49,000 children and young people in the UK who have a life-shortening condition this is the reality. Coping with your child’s death is unimaginable and families need support to plan for this. This new guideline is pivotal – it’s compassionate, and importantly it recognises that end of life care for children is different to adult care, and it has the power to give families real choice in their end of life wishes.

“Together for Short Lives welcome the principles set out by NICE and look forward to working with families, professionals and services to make sure that the final version advocates a comprehensive model of palliative care for children and young people. This has to be a total approach to care, from the point of diagnosis, throughout the child’s life, death and beyond, and which focuses on maximising their quality of life.

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