Transcript Looking after Children with Exceptional Healthcare Needs A

Healthcare Professionals
Working With Exceptional
Healthcare Needs Children
A Primary Care Perspective
Dr John Hardman
General Practitioner
Bonnyrigg, Midlothian
17th June 2009
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….
Who am I?
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GP partner
Eleven years as a GP
Eight years in Bonnyrigg
Clinical interests in cardiovascular disease
and drug dependence
• Little paediatric experience
Why am I here?
• Sam…
• Other children with exceptional healthcare
needs
• Care coordination process
Sam
• Born 16th August 2002
• Menkes disease diagnosed during
admission to Edinburgh Sick Kids Hospital
January to February 2003
• Multiple complex intractable problems
• Died 12th June 2004
What is the general practitioner’s
role?
• Ever changing…
• Holistic family care
• Care management
• Keeping perspective on medicalisation?
What did I find helpful?
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Care coordination meetings
Community palliative care nurse
Rachel House
Explicit care planning
Good out-of-hours communication
What was not so helpful?
• Communication with secondary care
• Difficulty accessing psychological supports
• Poor coordination between health and
social care funding
What would I change?
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Systems to further improve communication
Electronic access to information
Strengthen key worker role
Formal case managers?
Debriefing or peer supervision
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