Introduction Who We Are and What We Do

Introduction – who we are and what we do

• Jack & Jill provides and funds specialist home nursing care for children who have life limiting, severe neurodevelopmental and non-oncology palliative care conditions from birth to 4 years of age. We are the only registered charity who provide end of life care to all children in the 26 counties in their home.

• Ours is a nationwide service, which was set up in 1997 and has supported nearly 1700 children and their families since then, raising €47 million through our own fundraising efforts, while receiving €4.5 million from the HSE.

• We employ 11 paediatric liaison nurses directly, who help co-ordinate up to 1,000 nurses who provide hands on care in every community in Ireland.

• We require €2.7 million on an annual basis to do what we do and receive only 18% of this from the HSE, raising the rest ourselves.

• You have a county by county breakdown of the families supportedsince 1997, and the families supported in your home county today (See appendix 1a).

• You also have a link to the Trinity Report “There’s No Place Like Home” showing the average annual costs of Jack & Jill homecare provision at €16,422 is nine times less than the annual costs falling on the State to deliver acute hospital care at €147,365.

• That report also highlights the huge direct and indirect costs falling on families with severely disabled children in Ireland – whether their child is in hospital or not.

• You will never hear a family supported by Jack & Jill saying that caring for their child at home is easy, it’s not. But parents can do it and want to do it, providing they get the right supports.

Statistics specific to End of Life care

• Jack & Jill nurses have expertise in end of life care.
• We have a homecare model that works in supporting our children to live and to die well, a model that encompasses the needs of the Mums and Dads and brothers and sisters.
• Since 2010 to date we have received over 510 referrals. Of these 133children (26%) have died who were in receipt of our service, of those 61 were specifically referred to us for end of life care.
• 47of the 61 referred to us for end of life care have passed away.
• 14 in the first week of life
• 6 within the first month of life
• 22 within the first year of life
• 5 after one year of life
• 6 were taken off our books, thankfully no longer requiring our service as the child’s condition had improved.
• 8 are currently receiving palliative care.
• The remaining 72of the 133 children who died in our care since 2010, were not referred initially for Palliative/end of Life care but owing to the fragile nature of their conditions, they transitioned into the end of life phase and died.
• 60% of Jack & Jill children have diedat home vs national average of 11% (DoHC, 2005).

Types of conditions referred to us

• Trisomy 18

SMA (Spinal muscular Atrophy type 1)

• I-Cells
• Battens Disease
• Inoperable cardiac conditions

Our expertise in end of life care for children

• We don’t have a waiting list. Nursing care can be provided in the home within 24 hours, ondecision by the parents to take their child home to die.
• The Jack Jill liaison nurses organise and facilitate homecare plans contacting the right paediatric nurses to carry out this care.
• We provide and fund 64hours nursing care per month.
• We can facilitate the allocation of funding by the Irish Hospice Foundation and any HSE funding allocated to these families to be run through our service (due to staffing difficulties with the Irish Cancer Society and Nursing Agencies to obtain Paediatric nurses). This provides extra nursing care in the home guaranteeing continuity of care and provision of the care by Paediatric nurses.
• Our 11 nationwide liaison nurses also provide hands on care in the home at end of life, especially in the evenings and weekends.
• We provide an on call service as necessary, to provide support to the parents/ nurses /home care teams involved in the child’s care.
• We are one of the only out of hour paediatric service providing hands on care in the home.
• We liaise and communicate with the Outreach Nurses, Home Care teams, PHN, GP, hospitals, consultant Paediatrician for palliative care and the specialist palliative team in Our Lady’s Hospital for Sick Children, Crumlin.
• We are often asked to link back with families for advice and support whose children are over 4 years of age and are now considered end of life.
• We listen to and help co-ordinate parents’ wishes at the time of the child’s death.
• We liaise with expert counsellors and link parents to them when looking for advice re the needs of the siblingsof the end of life child or requiring bereavement support.
• We visit families for up to a year post bereavement if they wish.
• We organise a bereavement information day every 18 months for families.

Reminder: We receive only 18% from the Government to provide care in the home in the 26 counties. The rest is raised via private donations and a relentless,ongoing fundraising drive.

Top 10 Recommendations

1.Medical cards automatically sanctioned to children with life limiting conditions requiring end of life care before discharge home (take out financial requirement). Clarity around Long - term Illness card, criteria, what’s covered and make this part of the solution.

2.Funding needs to be provided to ensure 24 hour nursing care in the home at end of life (terminal care). Don’t assume that all the in-home services to families are around the clock like Jack & Jill.

3.Provision of funding to enable home care teams to provide symptom management and advice to all interdisciplinary teams involved in the care on a 24 hour basis.

4.Employment of paediatric nurses in the community to provide hands on care.

5.Education of paediatric nurses to a level 8/9 giving us the expertise to care for these children in the community. This could be provided by our current institutes. (Currently 4 Jack & Jill Liaison Nurses are undertaking a Masters Level in Children & Young People with Complex Needs and Palliative Care in Coventry University, UK).

6.Defined end of life care pathways. (Act Together for Short Lives).

7.These recommendations are correlated in the Palliative Care for Children with Life Limiting conditions in Ireland- A National policy (DoHc and IHF, 2009).

8.Ringfence a National Paediatric Home Nursing Care Budget, to relieve the pressure on HSE managers locally/nationally to find a budget that DOESN’T EXIST to send children home from hospital, which makes better sense medically, financially and socially.

9.Extra funding to be provided to the Jack & Jill Foundation, particularly in relation to end of life care. Use Jack & Jill as the Pilot for “money following the patient” model.

10.Jack & Jill service should be properly funded to extend to 6 years of age, increased from 4 years of age, in line with Ireland’s early years strategy, and recommended in Trinity Report.

APPENDIX 1a