As part of the National Palliative and End of Life Care Partnership, Together for Short Lives today jointly launches ‘Ambitions for Palliative and End of Life Care: A national framework for local action 2015-2020’. This new national framework urges local NHS organisations and local authorities to act to improve end of life care for people of all ages.
Through the partnership, made up of statutory bodies including NHS England and charities and groups representing patients and professionals, Together for Short Lives is committed to ensuring that these palliative and end of life care ambitions are realised for children and young people.
The framework sets out six ambitions or principles for how people near the end of their lives should be cared for. They build on the positive progress made since the publication of the Department for Health’s 2008 Strategy for End of Life Care.
Planning and talking about end of life care for babies, children and young people is challenging. Many professionals tell us that they struggle to talk about childhood death. Yet when families are supported to make choices that are right for them and plan for their child’s end of life care, it can make all the difference
Katrina McNamara, Director of Service and Practice Development, Together for Short Lives
The six ambitions for palliative and end of life care are:
- Each person is seen as an individual
- Each person gets fair access to care
- Maximising comfort and wellbeing
- Care is coordinated
- All staff are prepared to care
- Each community is prepared to help
Katrina McNamara, Director of Service and Practice Development, Together for Short Lives said:
“Planning and talking about end of life care for babies, children and young people is challenging. Many professionals tell us that they struggle to talk about childhood death. Yet when families are supported to make choices that are right for them and plan for their child’s end of life care, it can make all the difference. Families need to know that their child will be given the best end of life care that is based on the child’s and families individual needs and is right for the child or young person’s age. And excellent care and pain and symptom management for a dying child should be central to their care.
“This Ambitions document provides a much needed framework to develop a culture of good end of life planning for all at a local level – based on quality of care and on the wishes of the individual, regardless of their age. Everyone should be supported to have as good death as possible. It’s so hard for anyone to cope with childhood death; so we must do everything we can to help fulfil families’ end of life wishes for their child as these memories will stay with the family forever.”
We are urging clinical commissioning groups, local authorities and health and wellbeing boards to collaborate to understand the local population of children and families who need end of life care – and to publish local plans which set out how their needs will be met.
To ensure these ambitions are achieved for children and young people Together for Short Lives wants to see:
- end of life care provided in a way that is appropriate to people’s age and developmental stage
- sufficient numbers of people with the right skills, knowledge and competences to care for children and young people at the end of their lives
- effective commissioning of children’s palliative care to make sure that children and young people across England can access the care and support they need whenever they need it
- real choice for families over how where their children receive end of life care
- local communities supporting families caring for children with life-limiting conditions through volunteering and community action