Childrens palliative care

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Childrens palliative care

• From independent enquiry to effective sustainable
  services
• Alan Craft
• Liverpool Jan 2009

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Independent Review of Childrens Palliative Care
Services
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Defining childrens palliative care

• We used the ACT definition of childrens
  palliative care
• 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
  and includes the management of distressing
  symptoms, provision of respite and care through
  death and bereavement
• The care pathway therefore extends from the point
  of diagnosis to end of life care and may extend
  over many years

Independent Review of Childrens Palliative Care
Services
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Palliative care is a thread running through the
lives of most children with disability
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Many children with disability will have
palliative care needs during their lifetime
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Approach to undertaking the review

• We consulted widely with stakeholders and
  commissioned research
• A reference group
• Consultation letter and events
• A series of regional visits and national
  consultation meetings
• Commissioned research
• DH analysis
• York Health Economics Consortium

Independent Review of Childrens Palliative Care
Services
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Setting the scene
Childrens palliative care services are delivered
within an overall policy framework set by the
Government
Independent Review of Childrens Palliative Care
Services
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Findings
Independent Review of Childrens Palliative Care
Services
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Findings
We examined each of the following areas in detail

• Numbers and expected trends
• How many children and young people have
  palliative care needs?
• Where are they located ?
• What are the likely future trends?
• Services and accessibility
• What is the current availability and
  accessibility of childrens palliative care
  services?
• Funding and sustainability
• What are the current levels of funding?
• How sustainable is this funding?
• Effective and efficient service provision
• Which services deliver the best outcomes and
  represent value for money?

Independent Review of Childrens Palliative Care
Services
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Findings Numbers and expected trends

• Poor information base
• Strong overlap between the needs of children
  requiring palliative care and those with
  disabilities
• Relatively small numbers particularly at PCT
  level but wide variation
• Improved local needs assessments are essential
• Services need to be configured across a number of
  PCTs and local authorities
• Children and young people with palliative care
  needs are living longer and have more complex
  needs

Independent Review of Childrens Palliative Care
Services
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Findings Services and Accessibility

• Wide variation and inequity of service provision
  across England
• Uncoordinated approach to planning - duplication
  of services in some areas and lack of provision
  in other areas
• Overall shortage of community based services
• Too many organisational, budgetary and
  geographical boundaries
• Good integrated services do exist but these can
  be resource intensive
• We found a committed but frustrated workforce and
  parents who are willing to take on the main carer
  role if they are supported

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Findings Funding and Sustainability

• Funding is insufficient, largely ad hoc and
  short-term
• PCTs struggled to provide information on services
  for disability and palliative care
• Limited evidence of joint planning between health
  and social care
• Short-term grant funding has built up innovative
  services but not enabled them to attract
  long-term funding
• Planning and commissioning needs to be
  co-ordinated to support the development of
  services for total populations of 1 million

Independent Review of Childrens Palliative Care
Services
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Findings Effective and efficient service
provision

• Investment in community-based services could pay
  for itself
• Community services are better for children and
  their families as well as better value for money
• The most sustainable / cost-effective community
  teams are those capable of delivering support 24
  / 7 to total populations of 1 million
• Key workers are essential

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Services
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Important elements of a good service
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Recommendations
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Services
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Recommendations Planning and Commissioning
Planning and commissioning must be improved at
every level

• A national strategy
• Clarity about accountability
• Sub-regional commissioning
• Regional Paediatric Palliative Care Networks
• Voluntary sector key partners, stronger voice

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Services
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Recommendations Data Collection
Improvements in data collection and needs
assessments are urgently needed

• National data on prevalence and trends
• Develop a framework for regional and local needs
  assessments

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Recommendations Service Provision
Greater consistency of access to services in
England is required

• Access to ACT care pathway
• Focus on community services 24 / 7 teams
• Improved end of life care
• An effective single multi-agency assessment
• Transition
• Universal services

Independent Review of Childrens Palliative Care
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Recommendations Resources
More resources targeted at the right services

• Increase spend and focus on the most cost
  effective services
• Joint working by NHS and Local Authority
  Childrens Services
• Develop model contracts and best practice
  guidelines for dealing with the voluntary sector
• Training and information sharing for
  commissioners and the voluntary sector

Independent Review of Childrens Palliative Care
Services
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Recommendations Levers
Improved use of levers, including regulation and
audit

• A national indicator
• Children and Young Peoples Plans and continuing
  care criteria
• Standards and benchmarks
• Protect funding
• Regulation Thematic review

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Recommendations Greater recognition of
childrens palliative care
Greater recognition of childrens palliative care
as a specialism

• Sub-specialty of paediatrics
• Included in generic training for GPs and
  paediatricians
• Career pathway for nurses
• Workforce strategy

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• We were enormously impressed with the commitment
  of all those involved in delivering services. It
  would take a relatively small amount of
  additional resources and improved planning and
  commissioning to turn this commitment into
  excellent services for an extremely vulnerable
  and deserving group of children and young people

Sue Killen
Professor Sir Alan Craft
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Services
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Better Care , Better Lives

• Every child and young person with a life limiting
  or life threatening condition , will have
  equitable access to high quality , family centred
  , sustainable care and support , with services
  provided in a setting of choice according to the
  child and familys wishes

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3 key funding priorities

• Childrens community nurses providing all-round
  care packages and 24/7 end of lif support at home
• Short breaks with money from Aiming High
• Childrens paliative care networks to ensure the
  right people are working together , sharing best
  practice and planning services effectively

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Commisioners

• They are the key to effective implementation

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How people die remains in the memory of those who
live on

• Cicely Saunders

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Any questions?
Independent Review of Childrens Palliative Care
Services