DEFINITION

  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.

THERE ARE IMPORTANT DIFFERENCES BETWEEN PALLIATIVE CARE IN CHILDREN AND ADULTS

  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 period.

  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 financial burden.

  3.11  Provision of palliative care services will involve heath services—both 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.

THE NEED FOR PALLIATIVE CARE ARISES IN FOUR BROAD GROUPS OF CHILDREN:

  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.

BACKGROUND

  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 England—and £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.

FACTS AND FIGURES

  8.  Annual mortality rate for children aged 1-17 years with life-limiting conditions is estimated to be one per 10,000.

  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 annum.

  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%.

FUNDING PALLIATIVE CARE FOR CHILDREN

  13.  In 1994-95 £47 million was built into health authorities' general allocations to allow them to commission hospice services providing palliative care—to 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 awards—totalling £15 million—to children's hospices.

  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 care.

  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 in 2003-04.

  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.

CHILDREN'S PALLIATIVE CARE SERVICE PROVISION

  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 Funded projects.

  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 teams—also an expansion in respite care with 25 awards to children's hospices.

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 for siblings.

  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.

QUALITY ISSUES

  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 Package—hard 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.

Regulation

  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.

CONCLUSIONS

  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 initiatives—both 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 continues.