Healthcare Professionals Working With Exceptional Healthcare Needs Children

A Primary Care Perspective

Dr John HardmanGeneral Practitioner

Bonnyrigg, Midlothian

17th June 2009

Introduction

• Who am I?• Why am I here?

Working with children with exceptionalhealthcare 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?

• 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?

• 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?

• 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