Care Co-ordination for Children with Exceptional Healthcare Needs Claire Edwards

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 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

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