New guideline to support smoother transition for young people

Together for Short Lives has welcomed the new National Institute for Clinical Excellence (NICE) guidance on ‘Transition from children’s to adults' services for young people using health or social care services’. The guideline aims to support smoother transitions for young people to adults’ services and to promote age and developmentally-appropriate services to meet their needs and wishes.

In response to the draft guidelines produced by NICE last year, Together for Short Lives highlighted that many young people value the input of their parents in the decision-making process about their care and that parents will often remain significant carers for young people as they transition to adult services. The new guidance has now been strengthened to recognise this. Crucially, it stipulates that young people should be asked ‘regularly how they would like their parents or carers to be involved throughout their transition, including when they have moved to adults' services.’

Together for Short Lives was a registered stakeholder in NICE’s work to produce the guidelines; you can read Together for Short Lives’ submission to the consultation here.

Commenting on the new guidelines, Lizzie Chambers, Executive Director of the Together for Short Lives Transition Taskforce said:

“Medical advances mean that more young people with life-shortening conditions are living into adulthood, yet currently many still describe facing a ‘cliff-edge’ when they transition to adults’ services. They lose the comprehensive care offered by children’s services, have to navigate a new and unfamiliar system and forge new relationships with agencies and professionals.

“I am delighted that the new guidelines recognise that the young person and their family should be involved in every stage of their transition planning. I am also pleased that NICE acknowledge that young people who need palliative care are at a greater risk of falling into gaps between services.

"We are pleased that NICE’s new guidance reflects so many of the principles we set out in our transition framework ‘Stepping up’. These include having a named worker in children’s and then adults’ services to co-ordinate transition - and a wider breadth of support for young people which help them access housing and the world of work.”

Together for Short Lives is keen to support NICE in implementing their new guideline. We will also continue to support commissioners and providers to deliver smoother transitions for young people with life-shortening conditions. For example, our guide to jointly commissioning palliative care services for children and young people aged 0 - 25 gives clinical commissioning groups (CCGs) and local authorities in England a step-by-step guide to follow in meeting the needs of these young people.


  • Eun 24 February 2016, 17:45

    The problem is in our case and those of other Scottish families there is nowhere for our children to transition TO! Too old for the children's hospices but adult hospices don't offer respite so we are left to care 24/7 with no break for some of the countries most severely disabled and life shortened adults whilst our own health israpidly going down the pan after 30 years of caring.....

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