Tootie Bueser presentation 22.09.17 The long term needs of people with cardiomyopathy

Presentation from Tootie Bueser at the 2017 Cardiomyopathy UK national clinical conference. 0:00 Introduction 2:13 Top Ten Long-term needs of cardiomyopathy patients 2:40 Initial assessment and long-term medical follow up - PLAN 4:14 Multi-disciplinary Inherited Cardiac Conditions Clinic 5:15 King's Health Partners Hub and spoke model 7:33 Embracing technology #medicalselfie 7:57 The emotional effects of genetic diseases 10:32 Psychological impact of a specialised ICC clinic 11:43 Other findings 12:51 The good news.... 15:25 KHP Project 17:22 Lifestyle advice 19:23 Patient & family-centred care 21:41 Updated genetics input 23:53 Peer support 24:38 Involvement in research & service improvement 25:19 King's Health Partners Patient & Public Involvement for Inherited Cardiac Conditions (PPIICC)