NICE sets the standard for transitions to adulthood
Together for Short Lives has welcomed the new National Institute for Health and Care Excellence (NICE) quality standard on ‘Transition from children’s to adults’ services’.
The standard sets out five ‘quality’ statements which indicate high quality care for young people transitioning from children’s health or social care services to adult services. These are based on the priority areas of improvement for transition which NICE has identified and they cover the periods before, during and after the young person moves to adult services:
- Young people start planning their transition with health and social care practitioners by school year 9 (aged 13 to 14 years), or immediately if they enter children’s services after school year 9.
- Young people have an annual meeting to review transition planning.
- Young people have a named worker to coordinate care and support before, during and after their transition.
- Young people meet a practitioner from each adults’ service they will move to before they transfer.
- Young people who have moved from children’s to adults’ services but do not attend their first meeting or appointment are contacted by adults’ services and given further opportunities to engage.
Together for Short Lives played an active role in shaping these new standards, which relate to the recently-published NICE clinical guideline on transition to adulthood. We are a registered supporter of the new quality standard. We submitted evidence to the consultation on the quality standards which reflected the views of young people with life-limiting and life-threatening conditions in addition to individuals and organisations providing palliative care to children and adults.
Commenting on the new quality standard, Lizzie Chambers, Executive Director of the Together for Short Lives Transition Taskforce said:
“This quality standard is a crucial tool for young people and their families, setting out the quality of care and support that they should expect to receive as they transition from children’s to adult services. If fully realised, this quality standard will make sure that young people and families experience smooth transitions. It should also make sure that young people receive care which is appropriate to their age and developmental stage. We look forward to working with those who plan, fund and provide services to make sure this standard of care is offered to all young people with life-limiting and life-threatening conditions.
“Thankfully, advances in care and medicine mean that more children and young people with life-limiting and life-threatening conditions are living longer and surviving into adulthood. Indeed, the number of 16 and 19 year olds living with these conditions has doubled in the past decade. It is unacceptable that many young people often feel like they reach a ‘cliff-edge’ when it is time for them to move on from the children’s services which they are familiar with."