APPENDIX 10
Memorandum by Association for Children
with Life-threatening or Terminal Conditions and their Families
(ACT) (CC 16)
1. ACT believes that the announcement of
the development of a national framework for NHS continuing care
could potentially overcome the inconsistencies in service provision
and inequities of services received by children with life threatening/life
limiting conditions and their families.
2. The Statement by Dr Stephen Ladyman,
Parliamentary Under-Secretary of State for Health does not indicate
that children and young people's needs will be considered within
this work and although there is potential for inclusion, this
is not specifically stated. This suggests that children
and young people will be excluded from the inquiry.
3. ACT asks the Health Select Committee
to ensure that the individuals involved in the development of
the national framework will include representatives from children's
and young people's services.
4. ACT welcomes the introduction of the
Children's National Service Framework and is pleased that the
work includes a section on palliative care, but for equity of
service provision there is a need for children's services to be
considered alongside adult services not only in "stand-alone"
documents. There still is no consistent national overview or strategy
on children's palliative care services. The National Service Framework
for Children gives some direction to the development of children's
services, but the guidance is very broad and many Primary Care
Trusts and Strategic Health Authorities do not fully support the
case for developing integrated children's palliative care services.
Different agencies are often competing for the small amount of
funding that is available, which leads to a fragmentation of services.
Children's palliative care has a relatively small influence within
each Strategic Health Authority, partly due to the fact that the
numbers of children affected are small. However the needs of these
children and their families are complex and resources allocated
are often insufficient.
5. Palliative care for children and young
people with life-limiting conditions is an active and total approach
to care, embracing physical, emotional, social and spiritual elements.
It focuses on quality of life for the child and support for the
family and includes the management of distressing symptoms, provision
of respite and care through death and bereavement. It is provided
for children for whom curative treatment is no longer the main
focus of care and may extend over many years.
6. Short term breaks (respite) within the
home and out of the home are essential components of a palliative
care package. Some families also need the support of a long-term
respite facility. Many parents prefer to care for their child
within the family home and to do this they need a range of essential
support. There are a number of voluntary sector and NHS and Social
Services agencies which provide support in the home, but often
the provision is insufficient to meet needs. One major difficulty
with respite provision is that social services are unable to provide
appropriate services when a child has complex medical or nursing
needs and so the usual avenues for support are often closed to
families caring for a child with a life-limiting illness. Many
children with complex medical and nursing needs can receive funding
from their PCT through Continuing Care, but there is no national
criteria for accessing this funding—an issue which needs
to be addressed. There needs to be a menu of options for respite,
including children's hospice services, and this menu would be
best provided through a partnership between health, social and
education services and voluntary agencies.
7. In general services for children with
severe complex and life-limiting problems are very patchy. Services
for children require flexibility and the children and families
should be assessed at regular intervals to ensure that their changing
needs are provided for.
8. ACT believes that all patients, irrespective
of age, who receive palliative care should meet local criteria
for fully funded NHS continuing care.
9. This evidence is submitted on a corporate
basis. ACT would be very pleased to give oral evidence if required
and would be able to supply a parent representative to give a
"first hand" account of what it is like to be in receipt
of palliative care services. As the only organisation which can
represent children, their families and those working with them,
ACT would also be happy to provide contact with a wide range of
professionals working in this demanding area if this would be
useful to the committee.
February 2005
NOTES
The Association for children with Life-threatening
or terminal Conditions and their Families (ACT) is a registered
charity and was formed in 1993 as the first national organisation
to represent and support all those living or working with children
with life-limiting illnesses and to promote the needs of all children[7]
with a life-threatening or life-limiting condition. ACT has been
at the forefront of developing children's palliative care and
continues to champion the needs of children and families and support
professionals and will continue to work to fulfil this role for
the foreseeable future. Although based in the UK, ACT continues
to seek the development of children's palliative care internationally.
ACT's mission is to influence, co-ordinate and
promote the provision of the best possible care and support for
children and their families, through:
— promoting partnership between professionals
and between families and professionals;
— expanding membership to enhance its
representative voice;
— advocating for affected children
and families;
— supporting families with information;
— supporting professionals through
information and education;
— promoting knowledge and awareness;
— providing a forum for the exchange
and development of information between parents and professionals.
ACT represents the children and young people
affected with a life threatening or life limiting condition, their
parents and families and the professionals involved in the care
of the children, young people and their families.
7 We have used the term "child" to mean any
child or young person. Back
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