Memorandum by ACT (PC 38)
ACT (Association for Children with Life-threatening
or Terminal Conditions and their Families) is a registered charity
set up in 1993 to represent and support all those living or working
with children with life-limiting illnesses. ACT's mission is to
influence, co-ordinate and promote the provision of the best possible
care and support for children and their families, through:
— promoting partnership between professionals
and between families and professionals;
— expanding membership to enhance its
representative voice;
— advocating for affected children
and families;
— supporting families with information;
— supporting professionals through
information and education;
— promoting knowledge and awareness;
and
— providing a forum for the exchange
and development of information between parents and professionals.
ACT has published a number of documents relating
to children's palliative care, including:
— Charter for Children with Life-threatening
or Terminal Conditions and their Families, published in 1993.
— Guide to the Development of Children's
Palliative Care Services, first published in 1997, republished
in 2003. Produced jointly with the Royal College of Paediatrics
and Child Health.
— Palliative Care for Young People,
Aged 13-24, published in 2001.
— Assessment of Children with Life-limiting
Conditions and their Families: A Guide to Effective Care Planning,
published in 2003.
— Voices for Change: Current Perception
of Services for children with palliative care needs and their
families, published in 2003.
1. ISSUES OF
CHOICE IN
THE PROVISION,
LOCATION AND
TIMELINESS OF
PALLIATIVE CARE
SERVICES, INCLUDING
SUPPORT TO
PEOPLE IN
THEIR OWN
HOMES
Despite services increasing and expanding, provision
for children and families is still not strategically planned and
remains patchy with some areas well served and others, particularly
rural areas, poorly served[4].
. . 24-hour care is often not available and many families experience
delays in assessments (or complain that despite many assessments
no service provision is forthcoming to meet the assessed needs)
and there is an overall national lack of provision of support/respite
and aids/adaptations to assist with daily living. Multi-agency
partnerships, including the voluntary sector, should be promoted
between families and professionals. Currently, a general lack
of co-ordination across agencies leads to services being funding-led
rather than needs-led and this inevitably means that there is
little choice for families.
2. EQUITY IN
THE DISTRIBUTION
OF PROVISION,
BOTH GEOGRAPHICAL
AND BETWEEN
DIFFERENT AGE
GROUPS
There is no consistent national overview or
strategy on children's palliative care services. Many Primary
Care Trusts and Strategic Health Authorities do not fully support
the case for developing integrated children's palliative care
services. Different agencies are often competing for the small
amount of funding that is available, which leads to a fragmentation
of services. Children's palliative care has a relatively small
influence within each Strategic Health Authority, partly due to
the fact that the numbers of children affected are small. However,
the needs of these children and their families are complex and
resources allocated are often insufficient.
This issue was highlighted during the recent
allocation of funding from the New Opportunities Fund. In some
areas of the country (one example is Berkshire) the Strategic
Health Authority refused to commit to funding the children's palliative
care service beyond the three-year period of the New Opportunities
Fund grant, and as this was an essential criteria for the NOF
bids, these areas received no additional funding for their service.
Children's palliative care is distinct from
adult palliative care in many ways and historically this has meant
that it suffers as a result of the comparison. This historic development
continues to impact on service thinking today, with many palliative
care developments specifically excluding children's palliative
care. Children's palliative care is very wide-ranging and has
a different focus from the care that is provided for adults. Children's
palliative care services embrace a range of services that include
day care, hospice at home, terminal care and bereavement support.
The needs of adolescents and young adults in
particular are poorly served and the transition from child to
adult services is often badly managed. This is a common factor
in the management of many conditions which affect children across
their lifespan.
3. COMMUNICATION
BETWEEN CLINICIANS
AND PATIENTS;
THE BALANCE
BETWEEN PEOPLE'S
WISHES AND
THOSE OF
CARERS, FAMILIES
AND FRIENDS;
THE EXTENT
TO WHICH
SERVICE PROVISION
MEETS THE
NEEDS OF
DIFFERENT CULTURES
AND BELIEFS
Many families perceive that communication is
poor.[5]
When a child is first diagnosed, the breaking of bad news is often
felt to be very poorly handled and as time goes on the channels
of communication can deteriorate as families find that they struggle
to obtain the information that they need to make decisions. Communication
is more than an exchange of information. It is an interactive
and ongoing process which causes an area of contention between
clinicians and patients. Many families have complex needs and
as a result are involved with a large number of different professionals
and no single assessment process. The constant repetition of information
is a factor that many families find frustrating. Clear lines of
communication are needed and a keyworker for each family would
help to ensure that this happened.[6]
Communication within children's palliative care
is complicated as professionals often communicate with parents
rather than the child or young person. Situations can evolve where
none of the parties concerned are communicating honestly with
the other, often because parents are, for the best of reasons,
trying to protect their children by withholding information from
them. Training in these complex areas of communication is essential.
Another crucial area of communication within
children's palliative care is bereavement support. This should
be provided throughout the child's illness from the time of diagnosis
(if there is one) and should continue after the child's death
for as long as the family needs it. Evidence suggests that families
value bereavement support from other bereaved parents and ongoing
emotional support from an organisation from which they are already
receiving care. An external agency providing "counseling"
after a child has died is not the most appropriate form of bereavement
support.[7]
Not all children's palliative care services
cater well for families from ethnic minorities. Evidence shows
that such families often do not come forward for help and that
assumptions are made that this is because they do not require
support outside their own family and cultural support networks.
In reality, families from ethnic minorities often struggle with
unmet needs.[8]
Acorns Children's Hospice in Birmingham provides a model of good
practice in this area.
4. SUPPORT SERVICES
INCLUDING DOMICILIARY
SUPPORT AND
PERSONAL CARE
Short-term breaks (respite) within the home
and out of the home are essential components of a palliative care
package. Many parents prefer to care for their child within the
family home and to do this they need a range of essential support.
There are a number of voluntary sector and NHS and Social Services
agencies which provide support in the home, but often the provision
is insufficient to meet needs.[9]
One major difficulty with respite provision is that social services
are unable to provide appropriate services when a child has complex
medical or nursing needs and so the usual avenues for support
are often closed to families caring for a child with a life-limiting
illness. Many children with complex medical and nursing needs
can receive funding from their PCT through Continuing Care, but
there is no national criteria for accessing this funding—an
issue which needs to be addressed.
There needs to be a menu of options for respite
and this menu would be best provided through a partnership between
health, social and education services and voluntary agencies.
It should be remembered that service users are
first and foremost children who have the same needs as others
of their age. Extra support is often needed to ensure that children
with life-limiting conditions can access social, leisure and play
activities. Difficulties with accessing schooling can also cause
great emotional distress to children as school often provides
a child's only access to their friends. Contact with friends becomes
increasingly important to children as they get older. Many families
find the statementing process a major barrier to accessing this
important need in their child's life.[10]
5. QUALITY OF
SERVICES AND
QUALITY ASSURANCE
There are no national standards of quality assurance
for children's palliative care services. Whilst there are standards
for children's hospices, and a recently developed QA package produced
by the Association for Children's Hospices, these do not address
the quality of the majority of services which are provided outside
the hospice movement. ACT will be publishing an integrated care
pathway in the summer of 2004 which will set some universal quality
assurance measures.
The issue of quality assurance may be addressed
with the publication of the NSF for Children, but it is essential
that standards are effectively introduced with an expectation
that the recommendations are met by local service providers as
palliative care is not always seen as a priority for action by
local services.
6. EXTENT TO
WHICH SERVICES
MEET THE
NEEDS OF
DIFFERENT AGE
GROUPS AND
DIFFERENT SERVICE
USERS
In general, children do not receive as good
a service as adults. This is partly due to the fact that children's
palliative care is a relatively new discipline and therefore commissioners
do not have a realistic understanding of what is needed. Children's
palliative care is focused on the child's quality of life and
on what he or she is able to achieve. Whilst it encompasses physical
symptom control and there is a large element of nursing and medical
input needed, the emphasis is on the holistic care of the child,
including caring for their social, educational and psychosocial
needs. Services for children need to be flexible and needs should
be assessed regularly to ensure that the child's development and
changing abilities are provided for. The needs of the child's
family should also be assessed regularly as circumstances can
change rapidly.
Three distinct types of service user are not
well served:
— There is a paucity of services for
adolescents and young adults. This group does not fit well into
either children's or adult services and their needs should be
catered for separately, where possible. Transition planning to
adult services should take place in mid-teens so that appropriate
and timely support will be available.
— In general, the needs of children
with cancer are better met than the needs of children with non-malignant
conditions.
— The extended family including siblings
and grandparents. Siblings should receive support to enable them
to lead as normal a childhood as possible.
7. GOVERNANCE
OF CHARITABLE
PROVIDERS, STANDARDS
OF ORGANISATION,
LINKS TO
THE NHS AND
SPECIALIST SERVICES
In adult palliative care charitable funding
is traditionally condition-linked and likewise some children may
benefit individually according to the remit of a relevant charity
(eg Sargent or CLIC). However in the absence of an over-arching
funding arrangement for the needs of children requiring long-term
palliative care the majority of children are not provided for
by a specific charity and families find themselves financially
disadvantaged and also without the support of a clinical nurse
specialist.
8. WORKFORCE
ISSUES INCLUDING
THE SUPPLY
AND RETENTION
OF STAFF
AND THE
QUALITY AND
ADEQUACY OF
TRAINING PROGRAMMES
A general lack of appropriately trained paediatric
staff has caused recruitment and retention problems for many services.
There is insufficient funding for many of the
professions allied to medicine involved with children's palliative
care, including:
— Occupational therapists
— Speech and language therapists.
Training in children's palliative care is improving,
but there is a need for a national training needs analysis to
be undertaken. ACT has undertaken a survey of training provided
and has identified that training for non-professional support
workers (eg care assistants or volunteers) is one particular area
of need.[11]
In addition, adequate resources should be provided
to ensure that all staff working in children's palliative care
receive regular clinical supervision and emotional support.
9. FINANCING,
INCLUDING THE
ADEQUACY OF
NHS AND CHARITABLE
FUNDING AND
THEIR RESPECTIVE
CONTRIBUTIONS AND
BOUNDARIES
Financing of children's palliative care services
has received attention with recent government funding initiatives.
The New Opportunities Fund provided £48 million for children's
palliative care last year, but this was for a fixed three-year
period and does not provide for ongoing core funding of services.
Children's hospice services in England receive
on average just over 5% of their funding from statutory sources.
The voluntary sector has a large input into palliative care services,
and is by nature reliant on funding from charitable sources which
is increasingly difficult to obtain. Funding for children's hospice
services is clearly one critical element for the development of
children's palliative care and should be complemented by equal
attention being given to funding support for statutory services.
10. THE IMPACT
AND EFFECTIVENESS
OF GOVERNMENT
POLICY INCLUDING
THE NATIONAL
SERVICE FRAMEWORKS,
THE CANCER
PLAN AND
NICE RECOMMENDATIONS
The impact and effectiveness of any government
policy in children's palliative care will be severely reduced
unless it can focus on the common and consistently expressed needs
of all families caring for a child with long-term complex health
needs. The NICE recommendations are inherently condition-specific.
It is hoped that the Children's NSF, which is more generically
focused on the needs of children as one body, will provide more
consistently applicable guidelines.
Recommendations for Action
ACT has a list of 15 recommendations in its
Guide to the Development of Children's Palliative Care Services,
which could be of value to this inquiry. In addition to these
recommendations, ACT would like to suggest the following recommendations
for action:
(a)
Service mapping needs to take place to ensure that
services can be planned strategically.
(b)
A national palliative care strategy should be implemented
and should reflect work that has already been undertaken (such
as ACT's forthcoming Care Pathway document for Children with Life-limiting
conditions).
(c)
Each children's palliative care service should be
co-ordinated by a senior children's professional. There should
be a named professional responsible for children's palliative
care at both SHA and PCT level.
(d)
Service users should be included in service planning.
(e)
Each family should have a named keyworker.
(f)
Access to education needs to be improved for children
with life-limiting conditions.
(g)
Certain service users need additional attention:
— teenagers and young adults;
— children with non-cancer conditions;
— ethnic minority families; and
— extended family including siblings
and grandparents.
(h)
The training needs of all those working in children's
palliative care need to be evaluated so that appropriate training
courses can be developed and made more accessible.
(i)
The NSF for children needs to make it explicit that
recommendations relating to children's palliative care are expected
to be met by local service providers.
(j)
Additional funding should be made available for voluntary
and statutory providers of children's palliative care
This evidence is submitted on a corporate basis.
ACT would be very pleased to give oral evidence if required and
would be able to supply a parent representative to give a "first
hand" account of what it is like to be in receipt of palliative
care services. As the only organisation which can represent children,
their families and those working with them, ACT would also be
happy to provide contact with a wide range of professionals working
in this demanding area if this would be useful to the committee.
February 2004
4 ACT/RCPCH (2003) Guide to the Development of
Children's Palliative Care Services, Section 2. Back
5
Ibid, Section 4.2. Back
6
Thornes R (1993). Bridging the gaps; an exploratory study
of the interfaces between primary and specialist care for children
within the health services. Action for Sick Children, London. Back
7
Child Death Helpline and Forget Me Not Children's Trust anecdotal
evidence. Back
8
ACT/RCPCH (2003). Guide to the Development of Children's Palliative
Care Services, Section 5.10. Back
9
ACT (2003). Voices for Change, Section 4.1. Back
10
Summary of presentation made by a bereaved parent and trustee
of ACT at a workshop in Cambridge. Back
11
ACT/RCPCH (2003). Guide to the Development of Children's Palliative
Care Services, Section 10. Back
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