1. Children With Neurodevelopmental Delay And End Of Life Care Needs
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A review of specialist community service in Ireland
Anne Reilly RGN, RCN, MSc.
Margaret Naughton RGN, RCN.
Saundra Nolan RCN, RGN, BNS.
Community Liaison Nurses
The Jack & Jill Children’s Foundation
Dr Honor Nicholl
School of Nursing and Midwifery,
Trinity College, Dublin
Good afternoon ladies and gentlemen.
Thank you so much for your attendance at our presentation this afternoon. And a sincere thanks to the School of Nursing and Midwifery here in Trinity College Dublin, for extending us this opportunity to address you all today at this 13th Annual Interdisciplinary Research Conference.
My name is Anne Reilly, I am a community based Paediatric Liaison Nurse, with The Jack and Jill Children’s Foundation. I am accompanied today by two of my fellow Liaison Nurses - Margaret Naughton and Saundra Nolan who will also take part in our presentation, and also by (our mentor??) Dr Honor Nicholl, School of Nursing and Midwifery, Trinity College.
November 2012

2. Aim
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.
Our presentation consists of a 20 minute talk during which we hope to introduce you to The Jack and Jill Children’s Foundation: the work of the liaison nurses, our criteria for referral, our referral sources, our families, some case studies of the complex medical and nursing needs of these children and the many challenges that must be overcome etc. We will include data on the unique service needs of this unique group of children, and an outline of our service delivery to these children and their families in the community during the past 5 years. This will be followed by a 10 minute Q & A session.

3. The Jack & Jill Children’s Foundation
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 and Jill Children’s Foundation was founded in 1997 by our CEO Jonathan Irwin. We are a charity, and the only voluntary organisation in Southern Ireland that provides specialist home nursing respite care for children age 0 – 4 years, who have life-limiting, severe neurodevelopmental conditions. This would include for example babies born with severe Cerebral Palsy, West Syndrome, Wolf Horschorn Syndrome, Rhetts Syndrome etc. We also provide palliative home nursing care for children age 0 – 4 years with neurological and non-oncology conditions. This would include for example babies born with Edward’s Syndrome, Patau’s Syndrome, Spinal Muscular Atrophy Type 2, Smith-Lemli-Opitz Syndrome, Holoprosencephally etc.
The Jack and Jill office is based in Co Kildare and 8 people work there doing administration and vital fundraising work. The Liaison Nurse team, which provides this nationwide service throughout the 26 counties, comprises of 11 registered dual qualified, general and paediatric trained nurses. Each nurse brings many years of experience, skill and professionalism to her job with Jack and Jill.

4. Organisational Structure
CEO
Board Of Trustees
Administration team ( 9 plus CEO)
11 Registered Children’s Nurses
3 volunteers
Photos to be added

5. Organisational Structure
Photos to be added

6. Nursing Team 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
Photos to be addad

7. Nursing Team
Photos to be addad

8. Where Do We Provide Care?
Cover all 26 counties
Liaison nurse covering counties each
Anne Reilly
Cathy Keighery
Sinead Moran
Caroline Thomas
Mags Naughton
Saundra Nolan
Mary Joe Guilfoyle
Rhona Kett-Sheridan
Joanne Doyle
Marie Bowen
Eilin Ni Mhurchu

9. Who Do We Provide Care For?
Criteria
We 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

10. How Do We Provide Our Service?
Referral
Assess a need
Fund home services
Provide direct care
Liaison function
Ongoing support

11. Other Things We Do? Annual ‘Family day’ Advocacy
Strategic developments
Remembrance day
Family support
Fund raise

12. Data on services provided
Analysis of Organisational statistics from our database
11 Liaison Nurses examined Client Case Notes
No ethical approval required
The data that we use today in our presentation, is based on an analysis of organisational statistics, from our data base of the children we have cared for, over the past 5 years. The data consists of the number of children who received care, number of separate diagnoses, sources of referrals, the average age of referral, length of service provided and reason for discharge. This will contextualise the specialist community services required by pre-school children in Southern Ireland who have life-limiting and rare disorders. As this was a retrospective review of the liaison nurses caseloads over the past 5 years, no ethical approval was required to provide this data.

13. Sources Of Referral

14. The Children (2007 – 2011) New referrals 715 children
100 separate diagnoses
Outcomes
Over 4 ― cessation of service [ 29%-62% pa ]
Improved “assessed off books before 4” [ 7%-24% pa]
Death = 175 over
Our findings show, that 715 children were referred to The Jack and Jill service in the past 5 years. The children had a range of rare and inherited genetic and chromosomal disorders and acquired neurological conditions. Over 100 separate diagnoses were identified in the children who received services, which indicates the complex nature of providing individualised care, and the variation in each family’s needs. 21% of referrals came from acute paediatric and maternity hospitals. The average age of referral was 13 months. The average length of respite care provided was 17 months. Sadly, 25% of the children referred in this 5 year period have died. More than 60% of these died at home with the support of The Jack and Jill Children’s Foundation. The majority of children who died did so in the first year of life.

15. Services (2008 – 2010) Average age at referral was 13 months
Average duration of care provision was 17 months

16. Deaths January 2007 – December 2011
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

17. Deaths
OF INTEREST 25% 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

18. Challenges To Service Provision
Rapid response
Unpredictability
Children dying at home
Service needs
Staff needs
FUNDING
Providing end of life care can also be very unpredictable for our children. Unlike adults, their illness trajectory can be very long or very short. Each child is very different, and every family’s needs and expectations are very different when caring for a child who is dying at home. It is also vital to acknowledge that research shows that best practice for children with life-limiting conditions, is to have medical personnel who are specifically trained in paediatrics and paediatric palliative care. In Ireland, the majority of the members of community based home care teams, have training in adult based palliative care and oncology. The Jack and Jill nurses provide invaluable experience and support in the home at this time. They also play a role as advocate for both child and parents when dealing with MD teams during all stages of the child’s life, but in particular at end of life stage, as well as a pivotal role as link between hospital services and community services. , 18 18

19. Challenges 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
Other challenges include duration of service provision. In a lot of cases, children are not settled into a pre-school or special school setting before they come off our books at age 4. This is due to their severe medical needs or parents concern that they would not cope in a school setting without adequate support of a SNA etc. This can be a very traumatic, worrying time for both nurse and parent. Raising the Foundation’s upper age limit to age 6 would help to alleviate this trauma as past experience has shown us that those extra 2 years mean these children are stronger and more prepared. Their parents also benefit. As mentioned earlier, the huge range of diagnoses is also a challenge, as trying to provide specialist care for a child with no diagnosis provides an even greater trial. Referrals for these children can be very delayed and obtaining additional support and services can be extremely time consuming and demanding as they do not ‘fit’ the laid down criteria of medical forms etc. In a lot of these cases, the outcome is unknown. 19 19

20. Case Studies Amy (Edward’s Syndrome) John (Lissencephaly)
REFERRED TO J and j at 3 weeks
Met family in nicu day of discharge
Introduced nurse same day
Emergency funding sanctioned
Family decided a combination of day and night care required
Rip at home 5 weeks post discharge
John (Lissencephaly)
Diagnosed at 5 months referred by early int team sanctioned 8 hours home nursing per week parents sourced nurse themselves rural location mainly phone contact family benefit from respite

21. ...and Finally
Thank you!
Any questions