SUMMARY

  I am a Nurse Consultant in Paediatric Palliative Care, the first to be appointed in the UK and I write on behalf of the Specialist Palliative Care Team at the Royal Liverpool Children's Hospital and also the Merseyside and Cheshire Children's Palliative Care Clinical Network Group.

  The Specialist Palliative Care team have a high level of knowledge and clinical expertise in symptom management and end of life care and provide a service for children, young people with cancer and other life-threatening/life-limiting illnesses and their families. The team specifically provide support, education and training for professionals who care for this group of children and 24 hour support for both families and professionals during the end of life care.

  The clinical network is a multi-professional group that has been established to develop and drive a strategic approach to children's palliative care, including service development, needs assessment and education and training.

  As a distinct specialty palliative care for children is small, but dynamic and evolving.

  Although the numbers of children requiring supportive, palliative and terminal care are small in contrast to the adult population, this does not equate in terms of workload. In fact caring for a dying child and their family, a rare event particularly for the primary care team, can be highly labour intensive for a wide range of professionals. The children and young people who require palliative care have a huge range of diagnoses. Their periods of palliative care can range for many years for some of the degenerative diseases, follow a period of intensive curative treatment (eg cancer) or be rapidly progressive following diagnosis or acute event. Each is uniquely challenging for both the families and the professionals who care for them.

1.  Issues of choice and service provision

  Service provision for children and young adults is inequitable across the country and also between disease specialties. Specific problems include:

—  The provision of children's community nursing services is not comprehensive across the UK.

—  Many of the existing children's community teams are unable to provide a responsive 24 hour service, largely due to the fact that many teams have only 2-3 people and they are not funded to provide this aspect of care.

—  Specialist Nurses exist for some specialities eg Cancer and Cystic Fibrosis, but not all are skilled in palliative care and are not able to provide 24 hour expert advice during end of life care.

—  In combination and in recognition of the inexperience of the primary care team caring for a dying child and their family, some families will not be able to care for their child in their place of choice ie home, particularly at the end of life.

—  A frequent complaint from this group of families is that their child's care is fragmented and uncoordinated and they do not have a named key worker (ACT/RCPCH 2003).

—  Our team locally has been able to work closely with the Intensive Care Unit to facilitate the rapid transfer of children home for terminal care. This is highly labour intensive and requires a high level of coordination and the availability of access to practitioners who have skills and expertise in symptom management and end of life care. This is currently not available in many areas of the country and will probably occur on an ad hoc basis only.

—  The provision of respite care for this group of children varies greatly across the country. Resulting in that many families receive an inequitable service and this continues to be an area of concern for all families.

—  Respite care is also provided by children's hospice, but again this is a limited resource that receives no statutory funding, but that often provides an invaluable lifeline for families caring for a child with a life-limiting illness.

—  With ever improving technology and medical care, the care of children with degenerative life-threatening/life-limiting illnesses is now a growing challenge as many of this group are now surviving into young adulthood.

—  Caring for this group of young people is particularly challenging as they survive into adulthood, as a deterioration in their condition will mean an increase in their nursing needs, respite and home care requirements. Adult hospices are not equipped to meet this demand and many children's hospices have tried to respond to the needs of this group.

—  The challenge of transitional care is paramount in terms of who cares for this group of young adults, many are still cared for by paediatricians because no specific adult service has been identified for them.

—  For the young person with cancer, choice in the place of care for treatment and palliative care is far from clear and is one of the issues to be addressed by the NICE Guidance Development Group for this specialty.

2.  Funding

  This is one of the major difficulties for children's palliative care in that it is not a high profile specialty with distinct separate funding, it has in the majority of cases been excluded from accessing recent government funding for palliative care, which was specifically designated for adult palliative care.

—  Many of the nursing and other professional and voluntary agency posts in this specialty are or have initially been funded by charitable organisations, such as Macmillan Cancer Relief, the New Opportunities Fund, the Diana Fund. The challenge posed by this fact is that without this source of funding many of these posts would not exist and the service provision for this vulnerable group of children would be even more fragmented and inequitable.

—  The majority of Children's Hospices are dependent on charitable funds, with little or no central funding.

3.  Workforce issues

—  Across the country there is a paucity of specific education and training for this specialty, particularly for nurses.

—  There is no national strategy or coordination for multi-professional education and training.

—  Workforce development funding for education and training not specifically identified.

—  Palliative care for children and young adults was not incorporated in the national District Nurse Palliative Care education programme.

February 2004