Ms Sinead Moran:

On behalf of Jonathan Irwin, the CEO of the Jack & Jill Children's Foundation, I thank the committee for inviting us to make a presentation. We are here to talk about specific cases involving end-of-life care and the care we have provided for families. The Jack & Jill Children’s Foundation is a unique model that has been running for 16 years. We provide end-of-life care for children and families in the home. The model embraces the whole family.

I will refer to statistics we have compiled. We have kept information on families since 2010, including the number of referrals we have received, what percentage of the children died and where they died. Since 2010 we have received more than 510 referrals. Of those, 133 children have died, some of them at home. Sixty-one were specifically referred to us for end-of-life care or palliative care. A total of 47 of the 61 children have passed away and eight are still currently receiving palliative care. A total of 14 children died in the first week of life, six within the first month of life, 22 within the first year of life and five after reaching one year of age. Six of the children were taken off our books because their conditions improved and they no longer required palliative care. The remaining 72 of the 133 children, as indicated by Ms Ling and Dr. O’Reilly, were referred initially to the Jack & Jill Children’s Foundation for respite at home but due to the fragile nature of their health their conditions worsened and they made the transition to end-of-life care at home.

I ask committee members to remember that 60% of the children we looked after died at home, compared to the national average of 11%. People want their children to die at home. That is stated in the national policy from 2009. However, there must also be a choice involving hospice care, as home care does not always work for parents.

Patients with more than 100 different diagnoses have been referred to the Jack & Jill Foundation. The research was carried out with Trinity College in the past two years. Some of the conditions include trisomy 18, which is Edwards syndrome, spinal muscular atrophy type 1, and inclusion-cell disease.

What is unique about the Jack & Jill Children’s Foundation is that we do not have a waiting list. If a family makes a decision today to take their child home to die, we will have a nurse in the home within 24 hours. A total of 11 liaison nurses cover the Twenty-six Counties. We provide in-home nursing care ourselves. We do the hands-on work, including in the evenings and at weekends when no other services are available. We are one of the only out-of-hours paediatric nurse service providing hands-on care in the home.

We facilitate the allocation of funding from the Irish Hospice Foundation and the HSE for extra nursing care in the home. That sometimes happens because the Irish Cancer Society does not have qualified paediatric nurses to carry out hands-on care. Sometimes it can take time for the HSE to come on board with a home care package, and these children might die in the meantime. The funding is given to us to ensure that the same nurses are looking after children.

We provide an on-call service as necessary. Some of our nurses have gone out at 12 midnight and 2 a.m. when families are in distress when their children are at the end-of-life stage. We listen and help co-ordinate parents’ wishes. We also liaise with expert counsellors and when issues arise relating to end of life we can link families to them and they can talk to them and receive advice about their children or their own situations.

We visit families for up to a year post-bereavement and we also organise a bereavement information day for families every 18 months. We do a sibling group also. In the past year we have found that we have been asked to link back in with children who are over four years of age and to provide hands-on care in the home because the families have got to know staff since the children were six months old and they now have reached the end of life. It is of benefit to see a familiar face and a person whom they have known all along.

As nurses we spend a lot of time on the telephone seeking medical cards, HSE funding and home care packages for families in order to grant their wish to have their children at home. We are members of the national development committee on palliative care, which is the blueprint for the policy. I am a committee member. We have one of the best-qualified paediatric teams. Currently, four of us are undertaking a master’s degree in complex needs in palliative care for children and young people in Coventry. We would prefer to do it in Ireland but such a course does not exist at the moment. One of our nurses is qualified in bereavement care. Our recommendation is that medical cards be sanctioned for children going home for end-of- life care. Many issues arise with regard to the sanctioning of PPS numbers before medical cards can be provided in order to get equipment to send children home to die.

Clarification is required on the long-term illness card and what is covered for children with long-term illness. Funding must be provided to ensure 24-hour care can be provided in the home at the end of life or the terminal phase, because that is what parents want. The adult home care teams are wonderful and they have such experience. I would love if they could provide 24-hour care because there are two home care teams that, unfortunately, do not cover weekends. Funding should be provided to enable them to provide such care and advice for nurses and families in the home.

It is important that paediatric nurses are employed in the community, as they are the experts.

They know and look after these children in the home. There ought to be defined end-of-life care pathways in order that everybody knows his or hers when taking his or her child home to die.

We would like education of nurses up to levels 8 or 9, master's degree level. We have absolutely fantastic nurses doing the work. It is a case of giving them the necessary education and further knowledge. It would be wonderful for the institutes to take on the course. The IHF sponsored the course for three months, or for three of the modules to be run over one year, but, unfortunately, that has not been followed through.

There should be funding in place for children to go home to die. I do not know if it is ring-fenced in the budget, but the money should be available. It is very difficult for the civil servants in that they want to give the money, but sometimes the budget is not available to provide the necessary care in the home.

Extra funding should be provided for the foundation in order for it to continue doing what it is doing, which it does very well and which it has been doing for the past 16 years. It is a case of laying out the red carpet for the families affected, not the red tape. All of this is recommended in the policy document. There are 31 recommendations in total. The committee has done fantastic work in seeing this through and is making great progress. The eight outreach nurses have definitely made a difference and we can definitely see it working in the community.