1. Patient and Family Experience Summit
Dr Kate Granger
ST5 Doctor in Elderly Medicine & terminally ill cancer patient

2. About Me….

3. What I’m going to talk about
Experiences as a patient
Communication
Undergoing procedures
Deciding to stop chemotherapy
The impact of illness on me as a doctor
Advocacy
Importance of Palliative Care

4. My experience on the other side as a cancer patient

5. To me being a patient is…
Embarrassing
Undignified
Frightening
Stressful
Time consuming
Isolating

6. Simple as 1,2,3…
MRI scenario 6

7. Listen
Listen scenario – in pain, nausea, aware that I was developing renal failure again and that my stents had failed junior dr would not listen to me and ended up getting it sorted by involving med director and a consultant friend – not many other patients would have these contacts. 7

8. Imagine this scenario…
I am alone
I am in agony
A junior doctor I have never met before
Tells me I have metastatic cancer…
He then leaves me without telling the nurses what he has just said, does not ask if I would like him to get anyone for me and I never see him again

9. Finding out my definitive diagnosis
My Consultant sees me with his junior team
He asks if I want anyone with me
An appropriate warning shot is fired
I am gently told that I have DSRCT
He holds my hand
When I break down emotionally and ask the juniors to leave it is fine
Lots of quiet time for the news to settle
My questions are answered at an appropriate level

10. Procedure after procedure
Retrograde bilateral ureteric stent insertion
3 x nephrostomies
2 x omental biopsies
Hickman line insertion
Flexible cystoscopy and stent removal
Antegrade bilateral ureteric stent insertion
Hickman line removal
(and numerous venepunctures, cannulations, intimate examinations etc)

11. Dignity!
Having been through all that I felt as though my dignity had gradually trickled away.
Simple as drawing a curtain, privacy 11

12. Deciding to stop New Year’s Eve 2011
In hospital with febrile neutropaenia and peritonitis
Burdens of treatment outweighing benefits
Perceived as ‘giving up’ by some
Relief from others
Consultant tried to talk me into continuing…

13. Impact of terminal illness on me as a practising doctor

14. Communication Importance of the ‘Little Things’
Holding hands, on a patient’s level, patient centredness, time to care (impression of having time for people even when pressurised) 14

15. Breaking bad news
Right time, right person, right setting, right after-care

16. Advocacy I can advocate for myself effectively
Many of my patients cannot…

17. Palliative Care
Arguably the most important time in healthcare terms for a patient
Palliative Care is everyone’s business
One chance to get it right 17

18. Any questions?

19. To summarise Serious illness has had a major impact on me as a doctor
Communication, communication, communication
Patient-centred care is the Holy Grail
Patients are individual people first and foremost; they are not just disease entities
Time to care

20. Shameless self-promotion…