49,000 children and young people are living in the UK with health conditions that are life-shortening or life-threatening—and the number is rising.
Hearing the news that your child has a life-shortening condition and is likely to die young is devastating. It’s an incredibly distressing and confusing time. These children have very complex and unpredictable conditions and often need round the clock care, seven days a week.
Families have to cope with the knowledge that their child will die before them, and daily life for the whole family can become challenging. Although there are many excellent services helping them, these families still have to fight to get the care and support they need.
We are the leading UK charity that speaks out for all children and young people who are expected to have short lives. Together with everyone who provides care and support to these children and families, we are here to help them have as fulfilling lives as possible and the very best care at the end of life. We can’t change the diagnosis, but we can help children and families make the most of their time together.
We are here for every one of these children and their families, being a companion to parents on their journey so they know where to go for support and have the information to help them make the right choices about their child’s care. We are here to help children and their families to access specialist children’s palliative care services, day and night, seven days a week—when and where they need it.
We also support all the professionals, children’s palliative care services and children’s hospices that deliver lifeline care to children and families across the UK. By working together with professionals and organisations we provide a strong and unified voice, and help services deliver the best quality care and support tailored to each family’s needs.
We have over 1000 members - individuals, teams and organisations interested in and committed to supporting children and young people with life-shortening conditions and their families. These include children hospices, voluntary sector organisations and statutory service providers. Sign up here to become a member of Together for Short Lives and be part of the voice for children’s palliative care. If you are a parent or other family member, carer or friend of a seriously ill child you can join the Together for Short Lives family community for free.
Our three year strategy (2015 - 18) is designed to lead lasting change for children’s palliative care. The strategy - Quality of life, quality of death: Leading change for children’s palliative care aims to enable children, young people and their families in the UK to have as fulfilling lives as possible the best care at the end of life.
The strategy identifies five priority areas in which we would like to influence over the next three years. We have selected these because they are complex issues which cannot be addressed by individual services or professionals alone. They require a UK wide view and an approach which brings together a range of different agencies and individuals – including families, providers, professionals, governments, regulators and funders. Working in partnership with others, we will lead change in these five areas to improve the lives of children and families.
The five strategy priorities are:
- Information and support for families – so families can find the support they need locally and make informed choices about their child’s care.
- Quality of life, quality of death – so families receive high quality care through life and at end of life and supporting professionals and services to understand and meet the needs of more children and families in their diverse communities.
- Commissioning and sustainability – influencing local and national children’s palliative acre commissioning in all four UK countries and raising vital funds for children’s palliative care voluntary sector providers.
- Transition – improve young people’s transition from children’s to adult services and access to appropriate services and support
- Community engagement and volunteering –improve understanding of childhood death and dying and encouraging the sector to explore a community approach to children’s palliative care and invest in volunteering.