The Together for Short Lives has updated the 2007 transition care pathway document and has published Stepping Up: A guide to enabling a good transition to adulthood for young people with life-limiting and life-threatening conditions. The guide provides a generic framework that can be adapted locally to plan services specifically for teenagers and young adults with life-threatening, life-limiting or complex medical conditions. The pathway sets out five standards across 3 phases of care that should be developed as a minimum, with the aim of achieving equality for all young people and families, wherever they live.
There is growing evidence of the unmet needs and increasing numbers of young people with a life-limiting condition living into adulthood. The impact of unmet care needs can lead to poor outcomes for young people with complex and life-limiting conditions. Providing palliative care for young people requires detailed understanding of developmental issues, such as a young person’s physical, emotional, social and cognitive abilities. These will continue to develop, despite the onset of an acute condition or progressive impairment.
Providing care for young people is complex because of the interaction between physical health and emotional well being. Stepping Up is written to support the transition of young people with life-limiting conditions in all aspects of their life. It provides a multi-agency framework to support local planning and is written from the perspective of health services being the lead agency in this process as the young people we are concerned with have such significant health issues.
All young people who may die in early adulthood as a result of a life-limiting or life-threatening condition will benefit from this pathway. Some of these young people will have lived with a condition since birth or early childhood. Others may have developed the condition in their teens. For some young people their condition will cause progressive deterioration, whilst others will only just be realising the life-limiting nature of their condition at the time of transition.
You can also download an accompanying guide for commissioners.
A Standards framework for children's palliative care can also be downloaded here, setting out the key standards that form the back bone of all four of our care pathways, for easy reference. It also includes self-assessment audit tools relating to these standards, so you and your colleagues can map how your service currently performs and think about how to develop the areas where the standards may not be fully met.