Supplementary memorandum by the Department
of Health (PC 18A)
PALLIATIVE CARE FOR CHILDREN
1. The care of a child with a life-limiting
illness (LLI) and his/her family. LLI is defined as:
2. Any illness or condition developed in
childhood whereby the child is likely to die before adulthood
or with a limited expectation of life thereafter.
3.1 The disease spectrum differs. Cancer
is less predominant, neurodisability relatively more. See below.
3.2 The pattern has changed as diseases
formerly fatal in early childhood may now be treated allowing
survival into adolescence or early adult life.
3.3 Care may be needed over a prolonged
3.4 There is a continuity of care between
treatment, support, respite, and terminal care, and between active
measures to improve health and measures to control symptoms.
3.5 Whereas an adult patient may pass from
a treatment specialist to a specialist in palliative care, the
care of the child usually remains with the same team, albeit with
further expertise being brought in,
3.6 Much of the care is given by the parents
or other carers, and support of the family is very important.
Studies have shown the effects on parents include high levels
of depression, considerable effects on employment, and an impaired
social life, set within a family environment often characterised
by high conflict and stress.
3.7 Many of the conditions requiring palliative
care are genetic, so more than one child in a family may be affected.
3.8 The place of death is more often home
or hospital than hospice.
3.9 The type of care needs to reflect the
age/developmental stage of the child. Different professionals
will become involved as the child grows up and the particular
needs of the adolescent need to be taken into account.
3.10 Severe disability is more frequent
in relatively disadvantaged families and is itself a potential
3.11 Provision of palliative care services
will involve heath servicesboth acute, community and primary
care, social services and, importantly, education. Some of these
children may be temporarily or permanently Looked After by the
Local Authority eg in foster care or be in residential school
placements. Liaison across all these services is essential.
4.1 Life threatening conditions for which
treatment is available but may fail, eg cancer;
4.2 Conditions in which premature death
is expected but long periods of intensive treatment to prolong
good quality life are anticipated, eg cystic fibrosis, HIV infection/AIDS;
4.3 Progressive conditions that may extend
over many years and for which no curative treatment is available,
eg Batten disease;
4.4 Conditions with severe disability that,
although not progressive, lead to extreme vulnerability and in
which premature death is likely eg cerebral palsy.
5. The Department of Health facilitated
a £5 million programme of five year pilot projects in 1992.
These projects explored and promoted different ways in which NHS
services could care for children with life threatening illnesses,
and provide the support necessary for families. Initiatives came
from the statutory and voluntary sectors, and included community
home nursing services, voluntary respite and sitting services,
counselling and psychological support as well as projects with
children's hospices. The "Evaluation of the Pilot Project
Programme for Children with Life Threatening Illnesses" was
completed in February.
6. Funding (£1.4 million recurrent
for Englandand £200k each for Wales, Scotland and
N. Ireland) was provided by the HM Treasury, enabling eight Diana
Children's Community Nursing teams to be introduced in England
during 1999. These children's community nursing teams have undertaken
a major role in addressing the needs of families in urban and
rural areas and working with ethnic minority communities.
7. In 2001 the Department of Health commissioned
Regional Offices to undertake a review of palliative care provision
for children in their area. The resultant directory is subject
to update as initiatives are introduced. A copy of the current
directory of palliative care services by area is available.
8. Annual mortality rate for children aged
1-17 years with life-limiting conditions is estimated to be one
9. Accurate prevalence of severely ill children
with life limiting conditions is not available. But figures tend
to converge on 10 per 10,000 children aged up to 19 years per
10. This indicates that in any year there
will be some 11,000 children with a life-limiting condition, about
half of whom will need active palliative care at any one time.
11. There are approximately 1,500 new cancer
cases in children under 15 years per year in the UK. Overall survival
rate for children with cancer is approx 70%.
12. 52% of deaths in children and adolescents
with cancer (1995-99) were at home. Only 3% died in a hospice;
of these brain tumours accounted for approximately 50%.
13. In 1994-95 £47 million was built
into health authorities' general allocations to allow them to
commission hospice services providing palliative careto
reflect the identified health needs of their populations and to
agree firm service contracts with providers, including the voluntary
sector. This was to "include services for the care of children
with life threatening illnesses"circular (EL(93)14).
14. Statutory funding in support of children's
palliative care services is available via primary care trusts
(PCTs). There are no limits or restrictions placed on the level
at which funding may be provided; this is for local decision.
15. In January 2003 the NOF (New Opportunities
Fund) awarded over £45 million to 134 projects, including
70 awards to home-based palliative care teams, 39 awards to bereavement
teams and 25 awardstotalling £15 millionto
16. Local authorities also fund services
for children's respite care. £100 million extra is to be
made available for services for children, including respite/hospice
17. The Carer's Grant will remain "targeted",
meaning that the money is still labelled as for carers, and councils
will be encouraged to use it for that purpose. The Grant has increased
annually since its introduction and this will continue. It will
be worth £125 million in 2004-05 and will rise to £185
million by 2005-06.
18. Quality Protects Funding will be mainstreamed
into PSS from March 2004. From 2001-02 to 2003-04 a total of £60
million of the Quality Protects Grant has been earmarked for services
for disabled children and their families£30 million
19. The recent Green Paper "Every Child
Matters" followed by "Next Steps" indicates that
in future Children's Trusts will be commissioners for children's
services. Children's Trusts will be formed through the pooling
of budgets and resources across local education authority, children's
social services and certain health services. They will involve
other organisations that do not pool their budgets in a non-executive
capacity eg organisations from the voluntary sector.
20. Children's services have largely evolved
with initiatives from the NHS, the development of projects in
home care nursing teams and local authority social services and
respite care, the introduction of Diana Nursing Teams, the voluntary
sector's development of children's hospices and the New Opportunities
21. Palliative care is increasingly provided
as an integral part of generic children's community nursing services,
which are currently growing in number. In 2000 it is estimated
that some 70% of the country had access to a children's community
nurse. The New Opportunities Fund's children's palliative care
project has enhanced this number with 70 home-based palliative
care teams and 39 bereavement teamsalso an expansion in
respite care with 25 awards to children's hospices.
22. Hospice care for children can be an
important element of the care package. Again children's hospices
differ significantly from adult hospices. Children with life threatening
illness increasingly live much longer than in the past. The hospice
ethos is therefore geared to provide a child-centred environment
meeting the needs of a growing, developing child, and to meet
other needs such as allowing family members to either stay with,
or visit the child in the hospice, respite care needs and care
23. There are currently 28 children's hospices.
24. There are other establishments which
care for severely disabled children, eg the Children's Trust Tadworth
Court, and Chailey Heritage, and many children will receive respite
care in local NHS/local authority provision.
25. The Department of Health has developed
and facilitated the development of guidance over the last 10 years
to ensure quality standards against identified criteria.
The Children's National Service Framework
26. The Hospital Standard was published
in 2003 with three main aims: that care delivered in hospital
should be child centred, be safe and of high quality and be delivered
in an appropriate environment.
27. The remaining NSF standards for children
are due to be published later this year and it is expected that
palliative care will be included.
28. The Department is currently assisting
the Association of Children's Hospices with a project to provide
a Quality Assurance Packagehard copy and CD format. This
is designed to enhance the quality of care provided by children's
hospices services and will be made available to all children's
palliative care providers.
29. The Department has also funded the voluntary
organisation Action for Children with Life Threatening Illnesses
(ACT) to further research, and develop and publish care pathways
for children's palliative care.
30. The Department has also commissioned
Barnardo's to produce national guidance relating to the care of
long term ventilated (LTV) children. It is estimated that there
are some 6,000 children a year in need of technological support
in the home. This guidance will help to smooth the arrangements
in providing for these children to return home.
31. Other good practice documents include
the Department of Health's publication of the Paediatric Congenital
Cardiac Review. These standards for Best Practice reflect the
need for effective, integrated long term support for the children
with palliative care needs.
Children and Adolescents with Cancer
32. The National Institute for Clinical
Excellence (NICE) has commissioned the National Collaborating
Centre for Cancer to develop service guidance on child and adolescent
cancer for use in the NHS in England and Wales. The guidance will
provide recommendations for service provision that are based on
the best available evidence. This will include palliative care
and bereavement support.
33. The NICE service guidance will support
the implementation of the National Cancer Plan and have the effect
of updating the plan. The development of the service guidance
recommendations began last Summer. Guidance is to be completed
by February 2005.
34. The National Care Standards Commission
is an independent public body set up under the Care Standards
Act 2000, to regulate social care and private and voluntary health
care services throughout England. The NCSC has a major role in
the regulation of children's hospice services, since 1 April 2002.
35. The need for palliative care in childhood
has been more closely identified over the last decade and services
have been initiated across a range of interests, statutory and
voluntary. The Department has been instrumental in furthering
services in liaison with other Government Departments, including
the Department for Education and Skills, with whom there is a
close liaison over social care provisions under the Carers Initiative
and Quality Protects initiativesboth of which provide funding
for respite. There is also close liaison on the education of sick
children and the provision of education/social stimulus for children
with life threatening and terminal conditions.
36. The Department of Health has also maintained
a close working relationship with the voluntary sector and service
providers; David Featherstone Secretary to The Association of
Children's Hospices is a member of the Children's task Force.
37. Children's palliative care services
have evolved to their current capacity through a series of related
initiatives. The underlying conclusion is that it would be unhelpful
to set out a singular care pathway. Children and families require
an individual package of care consisting of a number of different
options which are especially relevant to points in the palliation
process. This multi-agency, cross-cutting approach has been promoted
by the Department with a view to addressing children's needs holistically
and in the light of practical research and innovation. This process