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
Principles of
Care Co-ordination
A number of principles underpin the practice of effective care co-ordination, these include
the understanding that:
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the ‘burden’ of co-ordination is shared with parents by the practitioners involved with the
child’s 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
What is CCNUK?
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A UK wide networking organisation
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Promoting the model of key working and a care co-ordination approach
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Supporting organisations/agencies delivering key working within the context of
care co-ordination
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Supporting parents to become informed about the approach and its potential
benefits
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Established by group of parents and professionals in 1999
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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)
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Funded by the three governments – Westminster, Welsh assembly (WAG) and
Scottish Government
Key outputs of CCNUK –
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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
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:
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Multi-agency commitment at strategic and practice level
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Resources to meet the training and supervision needs of Key Workers
Practice standards include:
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Providing emotional and practical support as required
Acting as an advocate or facilitating advocacy
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 –
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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