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