1. Welcome
To the first National Parents Advocacy Group meeting for children with I.B.D.
March 9th 2013
2. Introduced by
pain
diagnose fears
Crohn’s
friends facilities fistula
disease flare ups
infliximab enema
continuity of care
side effects
Text
dignity
misdiagnose toilet & nutrition
6MP diet treatments
✤ Liam Diamond nurses
colitis death
inflammation
isolation hospital
constipation long term illness
No Cure scar
medicine Humira
dignity
disease endoscopy
IBD cancer
relationships
doctors diarrhoea Specific Carbohydrate Diet
First national parents meeting www.gutsykids.ie 9 March 2013
3. Agenda
1. Introduction (& admin)
2. What’s been done so far?
3. Name, logo, website, etc
4. Medical & resource issues
5. Our first letters…
6. Open to the floor!
7. Lunch (1 - 1.30pm)
8. Regroup
1. Medical presentation Dr. Seamus Hussey
First national parents meeting www.gutsykids.ie 9 March 2013
4. 1. Introduction
• Roddy
✤ Group got together in
Jan 2013.
• Brenna (Child, 11 diagnosed at 2)
• Liam & Lisa (Child, 8 / Crohn’s
diagnosed at 2)
• Ger & Clare (Child 14/ UC
diagnosed at 11)
• Rachel (Child, 12 /Crohn’s diagnosed
at 10)
• Ann & Paddy
✤ Collaborating with G.I. Doctors &
Nurses at OLCHC
First national parents meeting www.gutsykids.ie 9 March 2013
5. 2.What’s been done so far
Name & Mission
Website Objectives
logo statement
8 Jan 24 Jan 21 Feb Today
Invitations & Dail Other first
Fundraising
press release committee steps
First national parents meeting www.gutsykids.ie 9 March 2013
6. Mission Statement
✤ Our mission statement
✤ To increase medical resources and facilities (both in-
patient and out-patient) available to children living in
Ireland with IBD; to raise awareness of the chronic nature
of Crohn’s and Colitis and the challenges these illnesses
place on young people and their families.
First national parents meeting www.gutsykids.ie 9 March 2013
7. Objectives
Short-term
•Secure additional nursing resources - currently 60% of 1 nurse in Crumlin to cover
450 patients
•Improve availability of theatre time in Crumlin for IBD patients
•Increase awareness of IBD generally, particularly in schools, to ease the burden of
children living with a chronic and incurable long term illness
Medium-term
•Secure access for IBD patients to a long term illness card
•Raise awareness of the need for a dedicated ward for IBD paediatric patients in
Crumlin / new national children’s hospital, including en-suite facilities
•Engage in fundraising activities to generate funds for this group’s efforts, and
ultimately for making specific, focussed and dedicated donations to Crumlin /
national children’s hospital for IBD patients
First national parents meeting www.gutsykids.ie 9 March 2013
8. Raising awareness
Irish Daily Star
Health + Family supplement
Tallaght Echo
News & coverage
The Irish Times
Health + Family supplement
Tuesday 5th March 2013
First national parents meeting www.gutsykids.ie 9 March 2013
9. 3. Logo, website & name
✤ Roddy Bourke
First national parents meeting www.gutsykids.ie 9 March 2013
10. Behind the scenes...
✤ Gutsy Kids logo was inspired by children
getting on with their lives despite this disease!
✤ www.gutsykids.ie
✤ twitter @gutsykids
✤ Linkedin group:GutsyKids
✤ www.crohnsforum.com
✤ Suggestions, ideas and stories welcome!
✤ info@gutsykids.ie
First national parents meeting www.gutsykids.ie 9 March 2013
12. Other online resources
✤ www.getgutsy.ie
✤ www.sickkids.ca
✤ www.ccfa.com
✤ www.cldi.ie
✤ www.iscc.ie
✤ www.nacc.org.uk
✤ www.olchc.ie
Some of the Good Guys
First national parents meeting www.gutsykids.ie 9 March 2013
13. 4. Medical resources
First national parents meeting www.gutsykids.ie 9 March 2013
14. Irish children with IBD
are nobody’s priority
are nobody’s priority
Ireland International Norms
Consultants 3 7
IBD Nurses 1 3
IBD Psychologist 0 1-1.5
IBD Dietician 0 1.5
IBD social worker 0 1
Weekly endoscopy 1 day 3 days
Time to 1st RV <4 weeks <2 weeks
First national parents meeting www.gutsykids.ie 9 March 2013
15. Advocating for children with IBD
✦ HSE/DoHC: - No national GI programme
✦ No complaints - IPA, Ombudsman, management
✦ When there is a paediatric IBD crisis – who can we
(the IBD team) call upon?
✦ Media coverage etc seems to be the only way we get
any crumbs from the HSE table…
First national parents meeting www.gutsykids.ie 9 March 2013
16. ISCC Dáil presentation
ISCC Dail presentation, 29th January 2013
First national parents meeting www.gutsykids.ie 9 March 2013
17. 5. Dear Minister...
✤ Paddy Kennedy
First national parents meeting www.gutsykids.ie 9 March 2013
18. 6. Open to the floor
First national parents meeting www.gutsykids.ie 9 March 2013
19. Suggested discussion points
• Name & where we’re from
• Child’s name and age now, diagnosed when?
• Any challenge/issue we’d like to raise
• What we’d like to get out of today / the group
• How we might be able to contribute to the group
First national parents meeting www.gutsykids.ie 9 March 2013
20. Lunch
First national parents meeting www.gutsykids.ie 9 March 2013
