Good practice in the delivery
of children and young people's
palliative care services.
Katrina McNamara-Goodger
Head of Policy & Practice, ACT
www.act.org.uk
About ACT
ACT is the only organisation working across the UK to
achieve a better quality of life and care for every lifelimited or life-threatened child or young person
and their family.
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Campaign for the development of children's palliative
care services.
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Work with professionals to develop best practice
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Empower and support families
www.act.org.uk
I will be focusing on:
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Some basics:
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The definition
What is a CYP Palliative Care Journey?
What do families and CYP want?
What does the policy want?
Bringing the two together
www.act.org.uk
Definition
Children’s Palliative Care is an active and total
approach to care embracing physical, emotional,
social and spiritual elements. It focuses on
enhancement of quality of life for the child and
support for the family. It includes the management
of symptoms, short break provision and care
during and following death and bereavement. It is
provided for children for whom curative treatment
is no longer an option and begins from point of
diagnosis, often extending over many years
ACT 2009
www.act.org.uk
This means
The aim of palliative care is to achieve quality of
life and a dignified death, preferably in a place of
the child and family's choosing.
All children with palliative care needs require an
individual package of care including variable
components of both generic and specialist
palliative care provided in a planned, coordinated,
timely and flexible manner as directed by need.
www.act.org.uk
A CYP Palliative Care Journey
From Diagnosis through Living with the
Condition to End of Life Care, Death and
beyond (ACT)
All stages of the care pathway from
diagnosis through to end of treatment,
including transition towards long term
survivorship and relevant aspects of cancer
related end of life care (CLIC Sargent)
www.act.org.uk
What do CYPF want?
More Than My Illness, CLIC Sargent
(2009)identifies
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Being Able to Go Home
Keeping up with education
Keeping up with social activities
Transition and Home Visit Support
Emotional Support
Finance and Employment
Practical Support
Information
Support for the Whole Family
Individual, Needs-led Support
www.act.org.uk
Recommendations
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Key worker
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Assessment and care planning
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Round the clock support
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Information and empowerment
www.act.org.uk
Living and Dying Well (2008)
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National action plan
It aims to ensure a comprehensive approach to
palliative care based on clinical need not diagnosis
Action Plan with 5 headings:
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Assessment and review of palliative and end of
life care needs:
Planning and delivery of care for patients with
palliative & end of life care needs.
Communication and co-ordination:
Education, Training And Workforce Development
Implementation And Future Developments:
www.act.org.uk
The CPC landscape
Well‐coordinated services, well‐informed families able to exercise real choice
www.act.org.uk
Practice Example 1
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Tertiary led, specialist team delivery:
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CYPF link with palliative care team/symptom
control team at diagnosis
Familiarity
Recognition of whole care pathway
24hr telephone support
Key worker: Assessment and care planning: Round the clock support:
Information and empowerment
www.act.org.uk
Practice Example 2
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Shared care, specialist team delivery:
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Palliative care delivered by same specialist
(cancer service) team; links to tertiary care
Development of skills and knowledge locally
Local link for family, ongoing care
Recognition of whole care pathway
24hr support
Key worker: Assessment and care planning: Round the clock
support: Information and empowerment
www.act.org.uk
Practice Example 3
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Shared care, tertiary service and children’s
hospice:
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Palliative care led by same specialist (cancer
service)
Links for palliative care with hospice/support
from primary care, (CCN services) 24hr support
Development of skills and knowledge (primary
care)
Local link for family, ongoing care, familiarity
Key worker: Assessment and care planning: Round the clock
support: Information and empowerment
www.act.org.uk
Challenges
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Sustainability
Consider the community impact
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Workforce issues
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Keeping universal services involved
Skills, knowledge, experience
Recruitment
Bringing together CYPF expectations and
policy levers
www.act.org.uk
Summary
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Considerable levers
Considerable challenges
Variety of options
No single, right answer,
One size doesn't fit all
CPC is more of an attitude than a process and as
such can work in a number of systems
www.act.org.uk
Thank you!
Katrina McNamara-Goodger
katrina@act.org.uk
www.act.org.uk