Memorandum by the Association of Children's
Hospices (PC 48)
The Association of Children's Hospices (ACH)
is a national charity and umbrella organisation working on behalf
of all UK children's hospice services and the children and families
for whom they care. ACH is the national voice for children's hospice
services and works collaboratively and in partnership with Help
the Hospices as an advocate for hospice services. ACH specifically
enables children's hospice services to work together and is dedicated
to developing best professional practice, improving the provision,
funding and strategic development of children's hospice services
and promoting the needs of children with life limiting conditions
and their families.
This submission has been compiled following
consultation with our member organisations comprising 34 operational
children's hospice services and eight in project stage.
Palliative care for children and young people
with life-limiting conditions is an active and total approach
to care, embracing the physical, emotional, social and spiritual
elements. It focuses on enhancing the quality of life for the
child and support for the family and includes the management of
distressing symptoms, provision of respite and care through death
and bereavement. (ACT/RCPCH 2003)
Current information on the epidemiology of children
with life limiting conditions suggests that 12 in every 10,000
children aged 0-19 years in the UK are affected by a life limiting
condition of whom about half will require active palliative care
at any one time. Meeting these needs takes place in a variety
of settings in which children's hospice services play a key role.
Children's hospice care includes residential provision for children
with palliative care needs and their families, as well as domiciliary
and day care support. Research has shown that children's hospice
services are highly valued by children and their families in meeting
In 2003, 3,400 children and their families were
supported by children's hospice services. Nationally it is estimated
that between 15-20,000 children have a life limiting condition
and who would therefore potentially benefit from children's hospice
care. Currently, the planning and development of children's hospices
is ad-hoc. Conscious of this situation, the ACH has set
up a working group to look at ways in which it might influence
positively the planning and development of future services.
The ACH calls on the Government to help support
it in this challenge by helping to forge close collaboration with
key agencies in the voluntary and statutory sectors.
One of the goals of this collaboration would
be the development of a comprehensive national strategy for children's
palliative care. Such a strategy would also complement and support
the work undertaken in preparation for the implementation of the
National Service Framework for children.
In addition, we endorse the proposal by Help
the Hospices that the Government appoint a Minister for Palliative
Care. Their role would not only be to join up policy on palliative
care for children and adults, but also to co-ordinate a cross
departmental cross sector strategy to support people in coping
with death and loss. To be effective, the partnership between
the NHS and the voluntary sector must be vibrant and strong. The
voluntary sector's experience is extensive, determined and innovative,
but all too often its voice is not heard, to the detriment of
the care that can be provided to children and their families.
In areas where Children's Palliative Care Networks,
embracing statutory and voluntary agencies have been established,
such partnerships often work very well. However, such Palliative
Care Networks are not presently a statutory requirement. A national
strategy could usefully set a requirement on Primary Care Trusts
to ensure that such Palliative Care Networks are established.
There are considerable workforce issues in children's
palliative care. There is a dearth of adequately trained care
professionals. A national strategy could tackle ways of increasing
the size of the available workforce in children's palliative care
and of attracting greater participation in post-qualification
Statutory funding streams for children's palliative
care services, and children's hospices in particular, continues
to be a pressing issue. Children's hospice services in England
receive on average just over 5% of their funding from statutory
sources. Although the Government's message over the last couple
of years has consistently been that children's hospice services
should look to secure funding from local commissioners, the experience
of children's hospice services has been that local commissioners
have not given priority to the funding of children's hospice services.
1. That the Government appoints a Minister
for Palliative Care to provide leadership to the wider palliative
care field and in particular to enable a national palliative care
strategy to be developed for children, young people and adults
with life threatening and life limiting conditions.
2. That the proposed Minister for Palliative
Care ensures that such a national palliative care strategy is
developed in true and close partnership between the voluntary
and statutory sector.
3. That the national palliative care strategy
strongly reinforces the requirements as set out in the Compact
for the statutory sector to closely collaborate with the voluntary
sector at all levels and, for example, requires all Primary Care
Trusts in England to establish Children's Palliative Care Networks
to facilitate this process.
4. That the Government invests in a programme
to address the urgent need to attract more health care professionals
into the children's palliative care field.
5. That the Government now gives priority
attention to the need to address statutory funding issues within
children's hospices and urgently extends to children's hospice
services the funding discussions that are taking place in relation
to the adult hospice sector.
1. Issues of Choice in the provision, location
and timeliness of palliative care services, including support
to people in their own homes
At present there is inequity of palliative care
services for children across the country. In effect this means
that availability of palliative care services for a child with
life limiting conditions and his/her family very much depends
on where they live in the country.
This has been addressed to a limited extent
by the investment into children's palliative care by the New Opportunity
Fund for a three-year period from 2003 to 2006. This funding is
however time-limited with no indication yet that it will be renewed.
Such a situation threatens the sustainability of such services
beyond the life of the funding. The collapse of such services
in the future due to the absence of renewed funding would be liable
to render the final situation worse than before.
2. Equity in the distribution of provision,
both geographical and between different age groups
As already stated, there is inequity of access
to palliative care services for children across the country. In
addition, the development of specialist services for specific
disease conditions is inconsistent. For example, services for
children with Cystic Fibrosis are better developed than those
for say children with Spinal Muscular Atrophy and Mucopolysaccaride
Furthermore, the availability of services for
young people (ie 13-24 year olds) as they make the transition
from children's to adult services is very patchy. The requirements
of the Care Standards Act 2000 and their local interpretation
by the National Care Standard Commission's inspectors are restricting
the ability of children's hospices to accept referrals of young
people aged 16 and over.
A report on "Palliative Care for Young
People aged 13-24" was published in September 2001 by Rosemary
Thornes on behalf of the Joint Working Party on Palliative Care
for Adolescents and Young Adults, set up under the auspices of
ACT (the Association of Children with Life Limiting and Life Threatening
Within this report, the number of young people aged 13-24 "living
under the threat of death who require symptom management and daily
care" was estimated at between 6,000 and 10,000. It is estimated
that this number will increase as improved techniques, treatment
and management of terminal conditions leads to life limited young
people living longer.
A summary of the current provision for this
age group is included in the report, but more detailed research
needs to be carried out to map the provision of palliative care
services for adolescents and young adults in the UK. No such mapping
exercise has been undertaken at a national level for children's
palliative care services. It is, however, a mark of the sector's
innovation that it is from within the children's hospice movement
that proposals (for example, the setting up of dedicated services)
are being developed to help achieve this smooth transition.
A national strategy for children's palliative
care would be able to address issues relating to this particular
3. Communication between Physicians 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 cultures and beliefs
There are some excellent examples within the
children's hospice movement of good practice in ensuring that
services are accessible to children and families from minority
ethnic groups. ACH will shortly commence a piece of work in collaboration
with its membership to explore ways of facilitating best practice
across all its member organisations, with a view to seeking to
enable children's hospice services across the country to be accessible
to low income and minority ethnic families.
4. Support services including domiciliary
support and personal care
For the majority of their time, children with
life limiting conditions are cared for by their families in their
own homes. Alongside specialist back-up, parents and carers need
practical help and support. Periods of respite stays in a children's
hospice are valued highly. But families also need regular short
periods of respite in the home, maybe even just a few hours at
a time, to give them the break they desperately need to attend
to other family responsibilities, or enjoy time with their other
children. "Respite at home" plays a valuable role in
the overall practical support provided to families.
There is, however, a great variability in the
provision of domiciliary support, in terms of what is offered
and how much. For example, psychological support is available
to some families, but even in teams with designated posts for
children with life threatening illnesses and their families, the
support is either very thinly stretched or "rationed".
This experience is repeated with other key services such as physiotherapy,
occupational therapy, speech & language therapy. Only rarely
are complementary therapies or art, music and play therapies available,
despite their considerable therapeutic value. Bereavement support
is one of the areas for which New Opportunities Fund monies have
been made available. This has been widely welcomed. But not all
areas received such funding resulting in too little by way of
support for many bereaved families.
5. Quality of services and quality assurance
There is close external scrutiny and regulation
of children's hospice services by the National Care Standards
Commission, with standards in place for both adult and children's
hospice services. The Association of Children's Hospices is engaged
in ongoing useful discussions with the National Care Standards
Commission about issues pertaining to specific standards and these
discussions will transfer to the Commission for Health and Social
Audit and Inspection as of 1 April 2004.
The Association of Children's Hospices has undertaken
pioneering work to develop a quality assurance tool for use across
the children's hospice sector. The tool has been piloted in a
small number of children's hospice services and will imminently
be adopted for use across the whole children's hospice sector.
In facilitating the adoption of the tool, the Association of Children's
Hospices plans to address the question of how best to motivate
children's hospice services to adhere to these standards, for
example through the establishment of Quality Networks.
This quality assurance tool has universal relevance
across the spectrum of children's palliative care service providers,
and the Association of Children's Hospices will seek in due course
to disseminate the tool to professionals working throughout the
children's palliative care field in the UK.
6. Extent to which services meet the needs
of different age groups and different service users
See Section 2.
7. Governance of charitable providers, standards
of organisation, links to the NHS and specialist services
The governance arrangements in all children's
hospice services are subject to regulation by the Charity Commission.
In addition, many children's hospice services
have in place a clinical governance framework and wherever possible,
colleagues working in children's services in the local PCTs and
Local Authorities are encouraged to sit on Clinical Governance
Committees within children's hospice services.
8. Workforce issues including the supply and
retention of staff and the quality and adequacy of training programmes
There is a paucity of State Registered Children's
Nurses who are willing to work in the field of children's palliative
care. As a consequence recruitment persistently proves to be a
significant problem across the children's palliative care sector
including children's hospice services. This has inevitably impacted
on service delivery and indeed in several instances across England
the opening of children's palliative care services, for example
many of those funded by the New Opportunities Fund, has been considerably
delayed due to staff recruitment difficulties.
Government initiatives in workforce planning
must urgently take account of the need for an increased workforce
in children's palliative care across the statutory and voluntary
A training needs analysis is urgently required
to identify the range of training and education opportunities
currently available and to identify gaps in education provision
for those working in the children's palliative care field. This
should include those health and social care personnel working
on the periphery of this field, such as GPs, who are often ill
equipped when they encounter a child with a life limiting condition,
due to lack of experience in this field.
It is proposed that the Government provides
funding for such and analysis, which could usefully inform negotiations
with educational institutions providing basic health and social
care professional training with a view to ensuring that training
programmes incorporate the fundamentals of children's palliative
care as a base line for all professionally qualified staff wherever
they may be working. The introduction of nationally recognised
and validated core competencies for children's palliative care
would greatly assist this process. Furthermore, training programmes
should seek to embrace a holistic approach to children's palliative
care needs with a move away from the emphasis on the more traditional
medical model, which is currently often the case.
The proposed training needs analysis could also
be used to look strategically with these institutions at the recruitment
of appropriate numbers of suitably qualified staff to meet the
needs of children's palliative care services across England.
9. Financing, including the adequacy of NHS
and Charitable Funding and their respective contributions and
At present children's hospice services in England
receive on average just over 5% of their income from statutory
funding. The Government's message over the last couple of years
has consistently been that children's hospices should look to
secure funding from local commissioners (such as, PCTs and Social
Services Departments). The experience of children's hospices,
however, is that local commissioners either do not hold children's
hospices as a sufficiently high priority or do not have the resources
to support children's hospices without diverting funds from other
It seems that the Government is content to point
to the New Opportunity Fund's funding of £48 million as the
method by which it supports children's hospice services. However,
as mentioned previously, this funding (which is for children's
palliative care services, not just children's hospices) is time-limited.
Little appears to be taking place at either national or local
level to ensure the continuity of funding beyond March 2006 to
sustain existing and newly developed services.
More significantly, the same principles, responsibilities,
and duties (Treasury rules on full cost recovery, use of charitable
funds, etc) set out in detail in the Help the Hospices' submission
apply as equally to children's hospice services as to adult services.
The Government, however, has seemingly refused to apply joined-up
thinking in its approach to children's hospice funding. Indeed,
at Help the Hospices annual conference on 18 November 2003, Melanie
Johnson, the Minister for Public Health expressed the view that
because children's hospice services receive such widespread public
support, they do not need Government funding. The Government needs
to address this glaring anomaly as a matter of urgency. As a minimum,
the Government should extend to children's hospice services the
funding discussions it is having with the adult hospice sector.
The Association of Children's Hospices and other organisations
(such as the Association of Children with Life Threatening and
Life Limiting Conditions and Their Families) working alongside
Help the Hospices are eager and willing to assist in the development
of appropriate funding models. This key issue would also form
a core element in our proposed national strategy for children's
It is not only the lack of Government financial
support that is of concern, but also the seemingly little regard
the Government has of the impact its policies have on the voluntary
sector, despite the requirements of the Compact for it to take
this fully into account. The financial implication of Agenda for
Change is a striking example. The Government has made considerable
resources available to the NHS to implement this much needed reform.
However, by ignoring its impact on the voluntary sector, it has
imposed an equally considerable upward pressure on costs, which
many children's hospice services will struggle to find from their
10. Impact and effectiveness of Government
policy including the National Service Frameworks, The Cancer Plan
and NICE recommendations
The Association of Children's Hospice and its
member organisations welcome the development of the National Service
Framework (NSF) for children. To avoid the possibility of misunderstanding,
this Framework will not serve the same purpose as the national
strategy for children's palliative proposed in this submission.
Within the NSF for children, the needs of children with life-limiting
conditions and their families can be expected to attract the briefest
of mentions. This is to be accepted. But the needs of such children
and their families must not be overlooked.
The Cancer Plan and NICE recommendations are
virtually exclusively directed at adult services. Within this
context, ACH echoes the comments from Help the Hospices that even
these initiatives are too narrow in their perspective and focus.
By fixing their gaze virtually exclusively on the NHS, they overlook
the wealth of experience, knowledge and expertise within the voluntary
and charitable sector. Their effect of channelling resources only
to these initiatives severely restricts the availability of resources.
None of the Government's Cancer Plan funding has come the way
of children's hospice services.
This seeming inability to see the common ground
between adult and children's hospice services, and the difficulty
with working within a framework other than the NHS, are serious
fault lines in the Government's thinking.
The hospice movementadult and children'sattracts
unprecedented public support. With the availability of such widespread
expertise, knowledge, and experience, there can be no stronger
reason for the Government and the voluntary and charitable sector
to work together in partnership than the synergy that would be
released for the benefit of those who need our services. The story
of the children's hospice movement demonstrates our commitment
to play our part. Our call to the Government is for it to do the
This submission is a summary of the key issues
which the Association of Children's Hospices considers to be critical
to the strategic development and delivery of children's palliative
care services, and children's hospice services in particular.
We would welcome the opportunity to meet the
Committee to discuss these issues further. We would particularly
like to discuss the proposal for a new Minister for Palliative
Care and the development of a national palliative care strategy,
and also the need for the development at a national level of clear
statutory funding streams to children's hospice services.
22 ACT/RCPCH 2003. A Guide to the Development of Children's
Palliative Care Services, ACT, Bristol. Back
ACT et al 2001, Palliative Care for Young People aged
13-24 years, ACT, Bristol. Back