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March 9th 2013
WelcomeTo the first National Parents Advocacy Group meeting for children with I.B.D.
Introduced by
✤ Liam Diamond
First national parents meeting 9 March 2013www.gutsykids.ie
Textenema
facilities
continuity of care
Crohn’s
colitis
disease flare upsfriends
diet & nutrition
fistula
IBD
fears
pain
isolation
diagnose
medicine
treatments
hospital
scar
cancer
death
relationships
side effects
misdiagnose toilet
long term illness
inflammation
nurses
dignity
constipation
Humira
6MP
infliximab
Specific Carbohydrate Diet
dignity
diarrhoea
endoscopy
doctors
No Cure
disease
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
9. Medical presentation Dr. Seamus Hussey
First national parents meeting 9 March 2013www.gutsykids.ie
1. Introduction
• Roddy• 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
First national parents meeting 9 March 2013www.gutsykids.ie
✤ Group got together in Jan 2013.
✤ Collaborating with G.I. Doctors & Nurses at OLCHC
2.What’s been done so far
First national parents meeting 9 March 2013www.gutsykids.ie
8 Jan 24 Jan 21 Feb Today
Name & logo
Fundraising
WebsiteMission
statementObjectives
Dail committee
Invitations & press release
Other first steps
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 9 March 2013www.gutsykids.ie
Objectives
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
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
First national parents meeting 9 March 2013www.gutsykids.ie
Raising awareness
First national parents meeting 9 March 2013www.gutsykids.ieFirst national parents meeting 9 March 2013www.gutsykids.ie
Irish Daily StarHealth + Family supplement
Tallaght EchoNews & coverage
The Irish TimesHealth + Family supplement Tuesday 5th March 2013
3. Logo, website & name
First national parents meeting 9 March 2013www.gutsykids.ie
✤ Roddy Bourke
Behind the scenes...
First national parents meeting 9 March 2013www.gutsykids.ie
✤ 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!
Under construction...
First national parents meeting 9 March 2013www.gutsykids.ie
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
First national parents meeting 9 March 2013www.gutsykids.ie
Some of the Good Guys
4. Medical resources
First national parents meeting 9 March 2013www.gutsykids.ie
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
Irish children with IBD are nobody’s priority
First national parents meeting 9 March 2013www.gutsykids.ie
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 9 March 2013www.gutsykids.ie
ISCC Dáil presentation
ISCC Dail presentation, 29th January 2013First national parents meeting 9 March 2013www.gutsykids.ie
5. Dear Minister...
✤ Paddy Kennedy
First national parents meeting 9 March 2013www.gutsykids.ie
6. Open to the floor
First national parents meeting 9 March 2013www.gutsykids.ie
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 9 March 2013www.gutsykids.ie
Lunch
First national parents meeting 9 March 2013www.gutsykids.ie
