What's in a Name? Does the diagnosis matter?

Vicky GrantFounder of the Knowing as Healing project Living well with Irritable Bowel Syndrome

@missvagranthil@sheffield.ac.uk

IBS Network Anniversary Conference 16th April 2016

What’s in a name?

Irritable Bowel Syndrome

What’s in a name?

“I hate the word "syndrome" in #IBS. It marginalizes patients as not having a disease. #changethenameofIBS”Mark PimentelGastroenterologist

“IMO "syndrome" is apt for #IBS: means a condition w. a set of consistently associated symptoms. "Irritable" not as apt.”Olafur PalssonGastroenterologist

Image by Joy Spencer. Included with permission.

“What the hell is going on in there?”

Joy SpencerIBS patient and artist

“Machete Shreds the Gut Syndrome”

Sophie LeeIBS patient and author

“Angry Bowel Syndrome”

AnneIBS patient and

Knowing as Healing project participant

“Dear God Just Shoot Me Now Bowel”

Sophie LeeIBS patient and author

Irritable Body Syndrome

Vicky GrantIBS patient and action researcher

Irritable Bowel Syndrome

“It marginalizes patients”

Mark Pimentel

“Any name with the word irritable and syndrome in

it will never be taken seriously by anyone”

Joy Spencer

What some students in my university think about irritable bowel syndrome

New worst email from the uni - 'Do you have irritable bowel syndrome?'. Who the hell even let that be sent out?!” “Who even gives these morons access to a computer”

“Do I have irritable bowel syndrome? Hahahahaha”

What the Royal College of Physicians think doctors should say to patients with IBS

“I have examined you thoroughly and cannot find anything wrong …”

“I am pleased to say that I do not think there is anything terrible going on here”

“This is good news …”

“You do not have a serious disorder such as cancer”

What do IBS patients say they want more than reassurance or even

possibly more than a cure?

“I’m not asking for a solution, I’m not asking for a cure. I’m asking you to believe me”

Sophie LeeIBS patient and author

“IBS is a terrible condition”

EmilyIBS patient and

Knowing as Healing project participant

Homonym

EmilyIBS patient and

Knowing as Healing project participant

Image created by Joy Spencer to support the IBS Network’s change campaign

#notjustIBS

Provocation one: A change of name will not improve the health of people living with irritable bowel syndrome. A change in attitudes will.

Question one: How can we change attitudes surrounding IBS?

Provocation two: The Royal College of Physicians does not understand patients with irritable bowel syndrome.

Question two: How can we encourage the Royal College of Physicians to train junior doctors to treat IBS as a serious condition?

Provocation three: Modern medicine is preoccupied with curing diseases and is not inclusive of people living with chronic syndromes.

Question three: How can practitioners and patients collaborate to create a healthcare system that is more inclusive of people living with IBS?

Today’s talk

Vicky Grant@missvagrant

Knowing as Healing: living well with irritable bowel syndrome. Recruiting now. Email: hil@shef.ac.uk to apply for a place.

Reference listCollier, J. D. ed. (2004) Medical masterclass: Gastroenterology and hepatology, London: Royal College of Physicians of London.

Keshav, S. ed. (2008) Medical masterclass: Gastroenterology and hepatology, 2nd ed., London: Royal College of Physicians.

Knight, J. (2013) New worst email from the uni - 'Do you have irritable bowel syndrome?'. Who the hell even let that be sent out?! [Twitter]. 28 January [online], available: https://twitter.com/Mr_Jack_Knight [accessed 29 January 2013]. Knight, J. (2013) Who even gives these morons access to a computer, let alone the uni-wide email system? [Twitter]. 28 January [online], available: https://twitter.com/stuhill90 [accessed 29 January 2013].

Lee, S. (2011a) Sophie's story : my 20-year battle with irritable bowel syndrome, Sherman Oaks, CA: Health Point.

Lee, S. (2011b) 'Why patients with irritable bowel syndrome are angry at their doctors', KevinMD.com [online], 10 Nov, available: www.kevinmd.com/blog/2011/11/patients-irritable-bowel-syndrome-angry-doctors [accessed 16 Nov 2014].

Lee, S. (2015) '10 things you'll only know if you've got IBS', The Metro [online], 2 October, available: http://metro.co.uk/2015/10/02/10-things-youll-only-know-if-youve-got-ibs-5415251/ [accessed 17 October 2015].

Palsson, O. (2015) “@MarkPimentelMD IMO "syndrome" is apt for #IBS: means a condition w. a set of consistently associated symptoms. "Irritable" not as apt.” [Twitter] 11 November [online], available: @DrPalssonUNC [accessed 31/03/2016].

Pimentel, M. (2015) “I hate the word "syndrome" in #IBS. It marginalizes patients as not having a disease. #changethenameofIBS” [Twitter] 20 October [online], available: https://twitter.com/MarkPimentelMD [accessed 31/03/2016].

Spencer, J. (2014) Chronically me: flushing out my life and time with IBS. A memoir in comics.