Websites:
Whilst this site focuses on end of life care services for adults, some of the principles apply to those for children. However there are also many differences, as outlined in the national strategy for children's palliative care - Better Care, Better Lives published in February 2008.
From the UK Department of Health End of Life Care strategy (July 2008):
1.21 The strategy focuses on services for adults. A separate review of children’s palliative care services [Palliative Care Services for Children and Young People in England], undertaken by Professor Sir Alan Craft and Sue Killen, was published in May 2007. The review drew attention to the challenges facing palliative and end of life care services for children and set out a number of recommendations for government, as well as for the development of services at a local level. The recommendations were endorsed by the government and a first ever national strategy for children’s palliative care – Better Care, Better Lives – was published in February 2008.
1.22 Whilst it is acknowledged that some parallels can be drawn between the principles applying to end of life care services for adults and those for children, it needs to be emphasised that there are also significant differences. For example, there are a wide variety of childhood conditions causing death before adulthood, many of which are rare. The time span of children’s illnesses may also be different from adults, meaning that palliative care extends over many years. Moreover, children continue to develop physically, emotionally and cognitively, and this affects both their medical and social needs, as well as their understanding of disease and death. Above all, a child’s death remains emotionally difficult, unnatural and unexpected for families and healthcare providers alike.
1.23 Due to advances in medical care, many children and young people suffering from life-limiting conditions likely to require palliative care are nowadays living longer, and many of them can maintain a good quality of life if they and their families are properly supported by services. However, they do require increasingly complex levels of support and it therefore becomes much more important that transitions to adult care are carefully considered by commissioners in planning end of life care services.
ACT has produced this Transition Care Pathway to provide a generic framework that can be adapted locally to plan services for young people with life-threatening or life-limiting complex conditions. In 2001, ACT identified the many distinct needs that these young people have in its report ‘Palliative Care for Young People, Aged 13-24’. Much of what was identified and described in this report holds true today and as the population of young people with life-limiting conditions grows and will continue to grow, it is vital that these needs are addressed and planned for.
These young people deserve to enjoy as normal a life as possible, with the same opportunities as their peers. When the end of their life approaches they deserve to die with dignity and with their choices fulfilled where possible. This Pathway will enable young people, families, service providers and commissioners to work together in one joined up planning process to enable this to happen.
(ACT - Association for Children's Palliative Care, April 2007)
The Transition Care Pathway for children with life-threatening or life-limiting conditions includes diagrams for:
1. Recognising the need to move on
2. Moving on
3. Recognition of the end of life
(ACT - Association for Children's Palliative Care, April 2007)
All children, young people and families like and need regular breaks and a chance to have some time out and fun. Parents and carers of children with a health condition that is likely to lead to a shortened life expectancy also feel that an important part of being a family is to have regular and planned ‘short breaks’.
Children's Services offer:
(St Oswald's Hospice)
Percy Hedley Children's Services meet the needs of children with cerebral palsy, children with hearing or visual impairments and children with speech, language and communication difficulties. As a regional specialist provider they do not belong to any local education authority and admit children from anywhere in the country, but predominantly from the North of England.
(Percy Hedley Foundation)
This joint DH/DCSF strategy presents the Government’s vision for children and young people’s health and wellbeing. It sets out how we will build on progress through: world-class outcomes; high quality services; excellent experience in using those services; and minimising health inequalities.
(Department of Health and Department for children, schools and families, 12 February 2009)
