With the population of young people who live with life-limiting or life-threatening growing, addressing their needs as they move from childhood into adulthood is a key priority.
To this end, Together for Short Lives, the leading charity for children’s palliative care in the UK, has published a guide called ‘Stepping Up’ which is now available to download.
The guide provides a framework that is easy to adapt to individual circumstances as young people become make the transition into adulthood.
Lucy Watts, a 21-year-old who has Ehlers-Danlos Syndrome who is an ambassador for Together for Short Lives and the International Children’s Palliative Care Network, emphasised the need for high-quality care for people her age:
“As young adults we need to be supported to achieve the best quality of life possible,” she said. “We are not children any more, however we are also not yet mature, experienced adults either.”
‘Stepping Up’ has also been endorsed by NHS England. Dr Jacqueline Cornish OBE, the national clinical director for children, young people and transition to adulthood, encouraged the providers and commissioners of services targeted at young people with life-limiting and life-threatening conditions to use the guide.
“This transition guide provides an excellent framework for planning and providing care and support to this often overlooked group,” she said. “It not only addresses their complex health and end of life care issues but, importantly, how we can support them to achieve their ongoing wishes and hopes for their future as young adults.”