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

About Me….

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

My experience on the other side as a cancer patient

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

Simple as 1,2,3… MRI scenario 6

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

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

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

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)

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

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…

Impact of terminal illness on me as a practising doctor

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

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

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

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

Any questions?

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

Shameless self-promotion… www.theothersidestory.co.uk