1. Healthcare Professionals Working With Exceptional Healthcare Needs Children A Primary Care Perspective Dr John Hardman General Practitioner Bonnyrigg, Midlothian 17 th June 2009

2. Introduction Who am I? Why am I here? Working with children with exceptional healthcare needs and their families What is the general practitioner’s role? What did I find helpful? What was not so helpful? What would I change? Challenges….

3. Who am I? GP partner Eleven years as a GP Eight years in Bonnyrigg Clinical interests in cardiovascular disease and drug dependence Little paediatric experience

4. Why am I here? Sam… Other children with exceptional healthcare needs Care coordination process

6. Sam Born 16 th August 2002 Menkes disease diagnosed during admission to Edinburgh Sick Kids Hospital January to February 2003 Multiple complex intractable problems Died 12 th June 2004

7. What is the general practitioner’s role? Ever changing… Holistic family care Care management Keeping perspective on medicalisation?

8. What did I find helpful? Care coordination meetings Community palliative care nurse Rachel House Explicit care planning Good out-of-hours communication

9. What was not so helpful? Communication with secondary care Difficulty accessing psychological supports Poor coordination between health and social care funding

10. What would I change? Systems to further improve communication Electronic access to information Strengthen key worker role Formal case managers? Debriefing or peer supervision

11. Challenges… Working with CENs relatively rare for GPs Primary care less holistic and family focused under new GMS contract Changing role of health visitors Fragmented out-of-hours care