anne reilly rgn, rcn, msc. margaret naughton rgn, rcn. saundra nolan rcn, rgn, bns. community...
TRANSCRIPT
Anne Reilly RGN, RCN, MSc.
Margaret Naughton RGN, RCN.
Saundra Nolan RCN, RGN, BNS.Community Liaison NursesThe Jack & Jill Children’s Foundation
Dr Honor NichollSchool of Nursing and Midwifery,Trinity College, Dublin
Children With NeurodevelopmentalDelay And End Of Life Care Needs
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A review of specialist community service in Ireland
November 2012
The aim of this presentation is to overview the
services provided by the Jack & Jill Children’s
Foundation to children in Ireland who have
neurodevelopmental disabilities.
Aim
The Jack & Jill Foundation established in 1997 by Jonathan Irwin and Mary Ann O’Brien
Registered charity in Ireland
Based in Naas, County Kildare
The Jack & Jill Children’s Foundation
CEO
Board Of Trustees
Administration team ( 9 plus CEO)
11 Registered Children’s Nurses
3 volunteers
Organisational Structure
Organisational Structure
11 Registered children’s Nurses
All RCN’s with other qualifications
All have 1-16 years of experience in children’s community care with the Foundation
Nursing Team
Nursing Team
Cover all 26 counties
Liaison nurse covering 1- 6 counties each
Where Do We Provide Care?
Anne Reilly
Cathy Keighery
Caroline Thomas
Eilin Ni Mhurchu
Marie Bowen
Joanne Doyle
Mags Naughton
Rhona Kett-Sheridan
Saundra Nolan
Sinead Moran
Mary Joe Guilfoyle
CriteriaWe provide home respite care to families of children with severe developmental and non oncology palliative care needs up the age of 4 years
1579 families to date 294 children currently receiving service
Who Do We Provide Care For?
Referral
Assess a need
Fund home services
Provide direct care
Liaison function
Ongoing support
How Do We Provide Our Service?
Annual ‘Family day’
Advocacy
Strategic developments
Remembrance day
Family support
Fund raise
Other Things We Do?
Analysis of Organisational statistics from our database
2007-2011
11 Liaison Nurses examined Client Case Notes
No ethical approval required
Data on services provided
Sources Of Referral
38%
16%
10%
8%
28%
Social Workers - 38%
Clinical nurse specialists( disability) - 16%
Family themselves - 10%
Clinical nurse specialists (pal-liative care) - 8%
Remaining 28% of referrals from 14 sources
New referrals 715 children
100 separate diagnoses
OutcomesOver 4 ― cessation of service [ 29%-62% pa ] Improved “assessed off books before 4” [ 7%-24% pa]Death = 175 over 2007-11
The Children (2007 – 2011)
Average age at referral was 13 months
Average duration of care provision was 17 months
Services (2008 – 2010)
175 children
50% male and 50% female
35 % died in hospital
61% died at home
3 children died on the way to hospital
1 death in residential care (transferred to Europe)
1 child died abroad on holiday
3 children died in respite
Deaths January 2007 – December 2011
OF INTEREST25% of children referred passed away during their time with our service, 60% of these children died at home.
National average for children 0-18 years who die at home is 11% (DoH&C 2009)
64% of deaths occurred in the first year of life
Deaths
Rapid response
Unpredictability
Children dying at home
Service needs
Staff needs
FUNDING
Challenges To Service Provision
Duration of our service provision
• Services ceases at age 4 years
• Seeking homecare packages for children who
continue to need care at home after leaving the
services of the foundation.
• Need a cohesive pathway for these children
Challenges
Amy (Edward’s Syndrome)
John (Lissencephaly)
Case Studies
Thank you!
Any questions
...and Finally