Palliative Care for Children and Young People in the UK
The Trust believes that everyone with a life-limiting or life-threatening
illness has the right to affordable palliative care.
What is Palliative Care?
The Trustees subscribe to the WHO definition of palliative care, outlined below:
'Palliative care is an approach that improves the quality of life of patients
and their families facing the problem associated with life-threatening illness,
through the prevention and relief of suffering by means of early identification
and impeccable assessment and treatment of pain and other problems, physical,
psychosocial and spiritual.'
It manages the patient's pain and symptoms and it is applicable early in the course of an
illness, in conjunction with curative treatments, and at the end of life.
Crucially palliative care also supports the patient's family through the illness
and their bereavement.
Close
The understanding and provision of Palliative Care for children and young people
in the UK is inconsistent. Although there are some excellent service providers,
too few families receive the help they need during a very difficult time in
their lives. Families need support to enable their children to live their lives
to the full with the minimum of pain and discomfort, and to die with the highest
degree of dignity. There should be a range of services available to allow
children and families to choose how and where they receive support. There should
also be specific support available to help parents and siblings through a very
emotional and challenging time in their lives.
Over the past four years, Trustees have supported the development of the
children's palliative care sector through a mixture of grants, which have been
used for a variety of different purposes, from influencing national policy to
demonstrating best practice at local, regional and national levels. The first
national strategy for England and Wales,
Better Care, Better Lives was published by the Department of Health in March
2008, the culmination of much of this work.
The challenge now is to make the strategy and statements of best practice a
reality for all families regardless of their geographical location, on a
day-to-day basis. After significant consultation with those working in the
palliative care sector, Trustees have decided to focus on the following areas
for the next three years:
- Creation of the UK's first Professorial Chair in Palliative Care for
Children and Young People to lead the development of best practice across the
country
- Creation of a pilot regional, 24 hour support service for children with
Palliative Care needs, bringing together the full range of specialists and
agencies. We expect this to incorporate a complete set of clinical and social
services and be replicable for any region of the UK
Alongside these two key pieces of work, Trustees will continue to focus on
building the infrastructure of the palliative care sector, influencing policy at
a national and local level, and supporting a small number of organisations which
demonstrate excellence and innovation at a local level.