What I Want From My Consultant ASGBI, 2008

1. What I Want From My ConsultantASGBI, 2008 Jo Grey CEO & Chair of Trustee Board Association for Multiple Endocrine Neoplasia Disorders (AMEND)

2. Quick Quiz • Attributes top “ten” • Honesty • Experience • Communication skills What I Want From My Consultant, ASGBI 2008

3. AMEND Member Survey(March 2008) • 61 respondents • Assessed patients’ opinions of • their perception of the state of their current care • issues surrounding possibility of national commissioning or regional special commissioning for MEN What I Want From My Consultant, ASGBI 2008

4. Honesty • Give patients realistic expectations of surgical outcomes • Level of expertise with planned procedure • Don’t make promises you can’t keep • Admitting to not knowing is not a sin! • “My consultant knew nothing about MEN but he has learnt” • “The consultant has had to work hard to locate specialists for information” What I Want From My Consultant, ASGBI 2008

5. Experience • Are you the best person for the job? What I Want From My Consultant, ASGBI 2008

6. Experience “You’ve obviously been eating far too much cheese; I suggest you stop.” (Later diagnosed with parathyroid hyperplasia and subsequently MEN1 - 2004) What I Want From My Consultant, ASGBI 2008

7. Communication • Good Communicators • Assess patients’ understanding • Make a patient feel heard • Make a patient feel supported • Take patient seriously • Earn trust by showing respect • Bad Communicators • Rush • Make assumptions • Patient feels unimportant/worthless • Patient feels alone • Lose trust and respect What I Want From My Consultant, ASGBI 2008

8. Communication • Barriers to communication • Physical • Mental What I Want From My Consultant, ASGBI 2008

9. Communication • Listening • Time “Everything is distant and rushed” (AMEND Member Survey) • Don’t presume you’ve heard it all before What I Want From My Consultant, ASGBI 2008

10. CommunicationAMEND Survey (March 2008) What I Want From My Consultant, ASGBI 2008

11. Communication • Sense of humour “That would be good for all your other joints but this one is metal and plastic so you’d be better off using WD40” “Your arm was probably a bit heavy” What I Want From My Consultant, ASGBI 2008

12. Communication • Supportive (the bigger picture) • Family • Support groups What I Want From My Consultant, ASGBI 2008

13. Communication • Continuity • Seeing the same person each time is important “I would rather see a knowledgeable person and not have to discuss everything in front of students” (AMEND Member Survey) What I Want From My Consultant, ASGBI 2008

14. Communication • Succession • Who takes over when you retire or leave? “That’s a good few years away and I’ll have retired so I don’t care!” What I Want From My Consultant, ASGBI 2008

15. Communication • Succession (AMEND Member Survey) • “[I am] no longer happy with the clinician and team at the hospital and not happy with their knowledge” • “Where my care was once excellent, it has declined dramatically.” • “Hitherto ‘Excellent’ [care] has descended to ‘Good’” • “Since the death of my consultant, my care provision has descended to ‘Poor’ as I don’t get to see a knowledgeable consultant.” What I Want From My Consultant, ASGBI 2008

16. What do I want? What I Want From My Consultant, ASGBI 2008

17. And finally… “I need to know that this body is my body, and I need to know everything that is happening to my body. But most of all, I need to know that you know that within my body there is me.” Michel Angelo Petrone (1963-2007) What I Want From My Consultant, ASGBI 2008