Memorandum by Dr Lynda Brook (PC 58)
This memorandum is submitted on behalf of RLC-NHS
Trust and the Merseyside and Cheshire Children's Palliative Care
CNG (Clinical Network Group) and is provided as a supplement to
that provided by Janet Vickers for additional clarification and
In addition to the WHO definition for adult
palliative care there is a recognition that children's palliative
care (RCPCH and ACT 2003)
Includes the provision of respite
(short break care) for families
Extends from diagnosis through palliative
and end of life (terminal) care through death and bereavement
Recognises that children with a wide
variety of diagnoses have palliative care needs, not just those
Children and families prefer to be supported,
as much as possible, by those professionals known to them and
that have cared for them from the point of diagnosis, through
the child's illness, to end of life care. Death in childhood is
rare. There is therefore a need for specific palliative care expertise
to support other healthcare professionals involved with the care
of children with life limiting conditions. This is particularly
important for end of life care, difficult symptom management and
complex psychological and communication problems.
A life limiting condition is one for
which there is no reasonable hope of cure and death in childhood
or young adulthood is expected
A complex chronic condition is a condition
that affects a child or young adult for a number of years and
requires management by a multidisciplinary team, often frequent
hospital attendance. A complex chronic condition maybe, but is
not necessarily, life limiting.
A technology dependent child is one that
is dependent on medical technology such as a ventilator, intravenous
nutrition, or renal replacement therapy (kidney dialysis) for
their survival. In the past these children would have spent their
entire life in hospital but more recently there has been a positive
move toward ensuring that all these children are cared for in
the community. A technology dependent child will often, but not
always, have a life expectancy less than that of a normal child.
However many of these children are clinically very stable and
do not have active palliative care needs in terms of symptom management
or high levels of psychological support.
BY NHS AND
There is no NHS or statutory provision of hospice
services for children in the UK. Children's hospices provide care
of an exemplary standard for respite and end of life care. However
demand is still much greater than availability of care. Most children's
hospices are supported by a team of GPs with a growing level of
expertise in children's palliative care. However few have access
to a consultant with specialist training and experience in children's
Community nursing teams
Children's community nursing teams may provide
palliative care in the community. The effectiveness of these teams
depends on effective leadership, medical support and appropriate
managerial structure. They include Diana nurses, many of the newer
NOF (New Opportunities Fund) funded teams, and generic children's
community nurses. They may require additional support from specialist
palliative care when providing end-of-life care at home.
Specialist outreach teams
These are usually linked to a specialist, disease
specific, hospital unit. Examples include Macmillan and CLIC nurses
who provide supportive and palliative care for children with cancer
and other nurse specialists for conditions such as cystic fibrosis
or congenital heart disease. Some nurse specialists, depending
on diagnosis, may require additional support for delivering end
of life care.
Consultant led specialist paediatric palliative
There are three consultant led multidisciplinary
teams (LondonGreat Ormond Street, Cardiff and Liverpool)
providing specialist palliative care to children and families
in hospital, hospice or community depending on need. These teams
provide a higher level of medical expertise in children's palliative
care and are able to support hospices, children's community nursing
teams, inpatient hospital teams and specialist outreach nursing
teams in the provision of palliative and end of life care where
there are specific problems or challenges.
There are no specifically designated NHS inpatient
beds for children's palliative care. Inpatient care for these
children is provided by teams led by paediatricians the majority
of whom have no specific training in children's palliative care.
Certain inpatient areas notably PICU will have a greater exposure
to end of life care for children. Paediatricians working in these
areas will have attained skills in end of life care through exposure
during their clinical work. Evidence suggests that end of life
care in hospital for children is often of a poor standard with
a reluctance to accept that the child is dying and to provide
appropriate symptom management.
Availability of and access to services
National care standards regulations mean that
children's hospice cannot accept new referrals over the age of
18 years. However through special application young adults referred
to the service before their 18th birthday can continue to use
children's hospice in some cases until their mid 20s. Thus there
is a two tier system in place where 18 year olds with new diagnoses
are not eligible for services available to other 18 year olds
who have a long-standing diagnosis. In addition there is a general
paucity of adult services suitable for those with complex neuro-disability.
Consequently young adults with such diagnoses end up in a no-man's
land unable to fully access children's services and with no appropriate
adult services to meet their needs.
Few children with congenital heart disease,
cystic fibrosis or cancer use children's hospice for respite care.
Consequently the option of hospice care is less readily accepted
for end of life care. Children that do not have significant nursing
needs but may have significant overall care needs such as those
with progressive muscle diseases are often poorly catered for
an not eligible for example for children's community nursing services.
There is wide regional and national variation
in the interpretation of eligibility of statutory funding for
example for continuing care. There is wide regional and national
variation in the availability of skilled children's community
nursing expertise, particularly out of normal working hours. This
impacts on choice for families wishing to care for their child
at home. There is also wide variation in the availability of children's
hospice and an overall paucity of access to consultant led specialist
palliative care for children except in the areas documented above.
Religious and Cultural Issues
Every attempt is made to respect religious and
cultural values when providing palliative care for children. However
the overall inequalities are likely to have an impact on the effectiveness
of this approach.
Children's services are frequently poorly co-ordinated
and fragmented. This is exacerbated by the piecemeal funding and
provision of services by numerous voluntary and statutory agencies
with no clear regional or national structure. Effective co-ordination,
organisation and development of services requires a clear management
structure with appropriate specific expertise and strategic leadership.
The rapidly evolving children's palliative care
services in Merseyside and Cheshire with a children's palliative
care CNG and ICNs (Intergrated Clinical Network) linked in with
the adult palliative care CNG reflects the strong leadership in
this area and well established relationships of both NHS and voluntary
Lack of continuity across primary secondary
and tertiary care, health, social services and education is also
a frequent concern. Children cannot attend school because there
is no-one to administer pain relief should they require it. Respite
facilities provided by social services maybe poorly utilised by
children with palliative care needs due to their fluctuating medical
condition. There are still protracted delays in discharging children
with complex care needs into the community due to delays or disputes
regarding obtaining funding, poor communication between agencies,
confusion and lack of accountability and lack of dedicated staff
time for training and discharge planning.
Lack of or lack of access to suitable expertise
Community nursing teams and specialist nursing
teams need medical support and expertise. Multidisciplinary palliative
care teams including doctors have been shown to have a significantly
greater impact on quality of end of life care when compared to
nursing teams alone. GPs and paediatricians are often reluctant
to take advise from nurses, regardless of the nurse's expertise.
There is a clear need for access to consultants with specific
training and expertise in children's palliative care to fulfil
this role. The most common reason for breakdown of long term care
packages in the home is psychological stress and lack of appropriate
psychological support for family and carers.
Lack of choice
Children and families cannot be cared for at
home because of delays in discharge related to lack of continuity
across primary, secondary and tertiary care health social services
and education as documented above. Children may not be able to
experience end of life care at home if 24-hour nursing and medical
support is not available in the community. Home care at the end
of life may also not be possible if hospital staff are not aware
of home and hospice as realistic options for end of life care
or do not have adequate resources for the transfer of the child.
NHS AND SPECIALIST
Children's hospices that are members of the
association of children's hospices have clear standards and governance.
However a few organisations that call themselves children's hospices
are not accredited by the ACH. Most Children's hospices have no
formal links to the NHS. However in practice many have strong
informal links both with general practice and local paediatric
There are only four consultants in paediatric
palliative care in the UK. There is a high demand for quality
nursing staff and competition between NHS and independent organisations.
There is little accredited training available, particularly for
nurses and a paucity of funding available for such training. This
is a high stress environment and burnout is a potential problem.
A lack of direct medical and managerial support has been an issue
particularly for community nursing teams leading to staff migrating
back to hospital or hospice environment. Medical postgraduate
education is required building on undergraduate palliative care
and ethics. There is a huge demand for postgraduate medical and
nursing education children's palliative care evident in the number
of requests for guest lectures in children's palliative care and
support for initiatives such as the Northwest Paediatric Palliative
OF NHS AND
Children's hospices receive no statutory funding
unlike their adult counterparts. The majority of NHS palliative
care posts, CLIC, Macmillan nurses, Diana nurses, NOF posts are
also soft money funded or pump primed. This creates further fragmentation,
poor continuity and lack of co-ordination and direction in order
to improve services for children and their families.
THE NICE RECOMMENDATIONS
The NSF for children is still coming out and
therefore it is difficult to comment on any impact so far. The
NICE guidance on children's cancer supportive and palliative care
is also awaited. In Merseyside and Cheshire there is well established
representation of children's services on the adult palliative
care CNG. We also now have a children's palliative care CNG and
ICNs. This is seen as clear acknowledgement of children's palliative
care services and the need to work closely with adult services
to ensure standards and continuity of care. However this commitment
to joint working is continually frustrated by funding streams
badged up for adult services only thus limiting the potential
effectiveness of this collaboration.