The National Institute for Health and Care Excellence (NICE) has today published new guidance ‘Care of the Dying Adult’. The new clinical guidelines were developed following criticism of the Liverpool Care Pathway and follow a consultation process in which Together for Short Lives was a registered stakeholder. You can read Together for Short Lives’ submission to the consultation here.
Commenting on the new guidelines, Barbara Gelb OBE, Chief Executive of Together for Short Lives, said:
We welcome the emphasis on personalised care in the new guidelines but we are disappointed that they fail to address the additional challenges in caring for young adults with life-limiting conditions. This group of young adults is growing in number due to improved medical treatments, information and support.
In our submission to the consultation, we set out that young people have a range of unpredictable conditions which means that they may have repeated ‘end of life phases’. They also have varying levels of capacity and some may want additional parental involvement in decisions around their care. The guidelines also do not set out how children’s and adults’ services should work together and communicate clearly when a young person is transitioning between services, nor do they specify that young people must receive care in an age-appropriate setting.
We look forward to working with NICE in the development of the upcoming guidance on transition between children’s and adults’ services and on end of life care for children and young people to make sure that they reflect best practice in caring for children and young people who are reaching their end of life phase.