March9th use-slideshare

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!

✤ [email protected]

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