Raising the

profile of IBD
in the UK

David Barker
Chief Executive

@davidbarkerceo 1
Why bother?
Seriously misunderstood
What do
people
Confusion
IBS!!!!
It will help all patients

know?

crohnsandcolitis.org.uk 2
Why bother?
Seriously misunderstood
Urmm...
Is it the
Confusion
IBS!!!!
It will help all patients

same as
IBS?
crohnsandcolitis.org.uk 3
Have people heard of IBD?

42%
A survey said. . .

23% had definitely heard of IBD/Inflammatory Bowel Disease

of respondents had

19% probably had heard definitely or

probably
20% not sure heard of IBD

38% definitely not heard of IBD in the last three months

HOWEVER – there is a significant difference between:

‘Hearing of’ vs ‘Understanding’
crohnsandcolitis.org.uk So u rc e : N fP Syn e rgy C h a rity A w a re n e ss M o n ito r (1 0 0 0 re sp o n d e n ts) 4
What do people affected by IBD think?
Total number of
On a scale of 1-4, how well do you think the respondents
general public understands IBD?
(9810)

1 = no understanding 1676 17% 95%

of respondents feel that
the public have
2 = limited awareness and understanding 7696 78%
limited or no
awareness/
3 = quite good awareness and reasonable understanding 409 4% understanding
of IBD
4 = everyone is aware of and understands IBD 29 0%

crohnsandcolitis.org.uk So u rc e : C ro h n ’s & C o litis U K A n n u a l Su rve y 2 0 1 7 (9 8 1 0 re sp o n d e n ts) 5

Greater understanding = benefit to all

How would you benefit from greater Total number of respondents

public awareness of IBD? (9644)

I would feel more confident going out in public 2568 25%

I would feel more comfortable telling people I have IBD 4457 44%

Improved understanding for my symptoms when in public 6213 62%

Improved understanding for my symptoms from other people who have an impact on
my life - teachers, employers etc 5767 57%

Less (or no) embarrassment about having IBD

3247 32%

Source: Crohn’s & Colitis UK Annual Survey 2017 (9810 respondents)

Answers are a % of total number who took the poll

crohnsandcolitis.org.uk 6
Education
Education
Education

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Education
Education
Education
Education is the most
powerful weapon which
you can use to change
the world Nelson Mandela

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Our five year strategy

Phase 1

• Strategic development

• Developing a narrative

• Agents of change
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Who do we want to talk to?
Healthcare
Professionals
Decision
Makers
People with
Crohn’s and
Schools Colitis
Employers
Relatives of
people
affected

General
public Opinion
Politicians formers

crohnsandcolitis.org.uk 10
 The Power of
Patient Voices

crohnsandcolitis.org.uk 11
Get people talking. . .
Developing the narrative
- How should we talk about the condition?

crohnsandcolitis.org.uk 12
 How do you refer to the condition that you have
(or someone you know has)?

IBD
40 .0 %

35 .0 %

vs 30 .0 %

Crohn’s 25 .0 %

20 .0 %

or 15 .0 %

Colitis? 10 .0 %

5. 0%

0. 0%
C r ohn 's C r ohn 's C ol it is U lce r at ive I BD O t her
D ise ase C ol it is

So u rc e : C ro h n ’s & C o litis U K O n lin e Su rve y 2 0 1 4 (3 0 2 2 re sp o n d e n ts)

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Talking publicly about the disease. . .

WE’RE MAKING A CONSCIOUS DECISION TO

SPEAK LESS ABOUT IBD,
AND MORE ABOUT CROHN’S AND COLITIS.
It’s how m ost patients talk about their conditions

With the right narrative it will make things more meaningful

It will help end the disastrous comparisons with IB S.

‘Crohn's and Colitis' is our preferred phrasing or Crohn’s D isease/U lcerative Colitis.

We accept that there are other elem ents of IBD (m icroscopic, indeterm inate etc)

We’re not s aying that it’s never appropriate to u se the term IBD

Our strength is in our name – Crohn’s and Colitis UK

we can abbreviate this to 'Colitis'.

crohnsandcolitis.org.uk 14
 My Gut
The most under
valued and
underrated
organ?
(but how do you describe it?)

crohnsandcolitis.org.uk 15
Developing the narrative
How should we describe the conditions?
A disease of my bowel/gut?

An autoimmune disease?

An incurable bowel disease?

My body attacking me/my digestive system/gut?

A problem with my digestive system?

Inflammation of/ulcers in my bowel?

Other?

crohnsandcolitis.org.uk 16
crohnsandcolitis.org.uk 17
We need a narrative that is:
• Clear
• Concise
• Simple/effective
• Consistently applied
Helps people better understand what the condition is rather than
simply focus on symptoms
crohnsandcolitis.org.uk 18
Support and empower individuals to become

‘Agents of change’

- Step up and speak out

- Action based awareness

- The power of community – Stronger Together

crohnsandcolitis.org.uk 19
Agents of change – Get people talking

Stepping out of the shadows

Giving people the confidence and

tools to step up and speak out

. . .whilst respecting that some

people will not wish too

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The power of the community. . .

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A role for the media. . .

• Getting the message out there

• Personal stories
• Correcting inaccuracies (or ludicrous headlines)

crohnsandcolitis.org.uk 22
Support and empower individuals to become

‘Agents of change’

Action based
awareness
crohnsandcolitis.org.uk 23
Agents of change – Action based awareness

• Simple sign, big difference

• Mobilising the community

• 20,000 emails

• 2,500 stores

• A life of it’s own

• Shopping centre’s, football clubs,
theme parks, National Trust

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Phase 2 – Travel hubs

50,419
cam paign em ails
sent

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crohnsandcolitis.org.uk 26
Why bother?
Seriously misunderstood
Confusion
IBS!!!!
It will help all patients

crohnsandcolitis.org.uk 27
 Thank You

crohnsandcolitis.org.uk 28