Memorandum by Janet Vickers (PC 51)
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
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.
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
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
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.