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 coordinate 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 supported
since 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.
https://www.jackandjill.ie/wp-content/uploads/2010/02/Jack-Jill-No-Place-HomeReport.pdf
 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
133 children (26%) have died who were in receipt of our service, of
those 61 were specifically referred to us for end of life care.
 47 of the 61 referred to us for end of life care have passed away.
o 14 in the first week of life
o 6 within the first month of life
o 22 within the first year of life
o 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 72 of 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 died at 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, on decision 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 64 hours 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 siblings of 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
County
Current Number of Cases 2013
Cases since 1997
Co. Carlow
2
27
Co. Cavan
3
28
Co. Clare
6
45
Co. Cork
31
194
Co. Donegal
7
35
Co. Galway
22
107
Co. Kerry
10
44
Co. Kildare
11
92
Co. Kilkenny
6
35
Co. Laois
7
31
Co. Leitrim
2
9
Co. Limerick
19
84
Co. Longford
2
14
Co. Louth
6
45
Co. Mayo
10
69
Co. Meath
12
70
Co. Monaghan
3
23
Co. Offaly
3
24
Co. Roscommon
4
21
Co. Sligo
6
21
Co. Tipperary
8
41
Co. Waterford
11
57
Co. Westmeath
4
36
Co. Wexford
17
87
Co. Wicklow
7
36
Dublin & Co. Dublin
56
422
TOTALS
275
1697