Care Co-ordination for Children with

1

• Care Co-ordination for Children with
• Exceptional Healthcare Needs
• Claire Edwards
• Chair of CCNUK (Care Co-ordination Network UK)
• Independent Trainer
• Parent of a disabled child
• Former Director of SNIP (Special Needs
  Information Point)
• Key worker for young disabled man 2002 - 2004

2
Principles of Care Co-ordination

• A number of principles underpin the practice of
  effective care co-ordination, these include the
  understanding that
• the burden of co-ordination is shared with
  parents by the practitioners involved with the
  childs family
• the child is seen as part of a family (whatever
  that might look like) and not in isolation i.e.
  the interventions, actions and inactions will
  have a wider impact
• this is done through the identification of the
  core personnel at each stage with an allocated
  key worker or lead professional
• this practitioner is a single point of contact
  for the family and for referral
• the priorities and concerns of the family are
  given prominence and full regard in all
  discussions
• the relationships that develop within this core
  group enable families to more easily receive and
  make use of support and challenge
• the emotional impact for parents must be
  considered at all times and the affect on
  practitioners working to support families must be
  also addressed
• multi-agency working and communication is
  essential to provide families (and practitioners)
  with creative responses to understandably complex
  scenarios
• A lack of co-ordination adds to the stress of
  families and to reduced effectiveness and job
  satisfaction for practitioners

3
What is CCNUK?

• A UK wide networking organisation
• Promoting the model of key working and a care
  co-ordination approach
• Supporting organisations/agencies delivering key
  working within the context of care co-ordination
• Supporting parents to become informed about the
  approach and its potential benefits
• Established by group of parents and professionals
  in 1999
• Staff team of 9 strategic direction provided by
  a board of trustees (parents and professionals in
  the field of childhood disability and care
  co-ordination)
• Funded by the three governments Westminster,
  Welsh assembly (WAG) and Scottish Government

4
Key outputs of CCNUK

• Website
• Directory of services
• Directory of training providers including SNIP
• Newsletter
• Resource pack
• Membership
• Disseminating of research by Social Policy
  Research Unit (SPRU) and Edinburgh University
• The standards and the self assessment tool

5
The Standards benchmarking good practice

• Supporting the move from good practice to
  common practice
• Endorsed by Westminster and Welsh Assembly
  Government and recognised by Scottish Executive
  (2004)
• Organisational standards include
• Multi-agency commitment at strategic and practice
  level
• Resources to meet the training and supervision
  needs of Key Workers
• Practice standards include
• Providing emotional and practical support as
  required
• Acting as an advocate or facilitating advocacy

6
Why must we achieve co-ordination of care for
these children and their families?

• By their very nature the circumstances in which
  these families are living are exceptional, this
  requires us to
• be creative, proactive, responsive, empathetic,
  insightful and humble
• put ourselves into the shoes of family members
  and try to understand what it feels like for them
• use the full range of communication approaches
  to discuss, negotiate, encourage and explore
• Incorporating everyday life into these
  scenarios presents an additional challenge and
  where there are siblings it is even more
  necessary for every effort to be made to work
  around the priorities of the family
• To ensure that staff can facilitate and deliver
  the kind of care these families need they must be
  well supported and managed at senior and
  colleague level