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Palliative Care for Children

Dáil Éireann Debate, Monday - 11 September 2017

Monday, 11 September 2017

Questions (1108)

Gerry Adams


1108. Deputy Gerry Adams asked the Minister for Health the recommendations made further to the review of the 2016 children's palliative care programme; the number of the recommendations that have been explored in further detail; and the number of the recommendations that have been implemented to date. [37855/17]

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Written answers (Question to Health)

The evaluation of the Children’s Palliative Care Programme, which was published in November 2016, contains 20 recommendations for the further development of children’s palliative care services. The Evaluation noted that the Children’s Palliative Care Programme had made a major difference to the lives of children with palliative care needs and their families and recommended a strengthening of the Children’s Palliative Care Programme to include more children’s outreach nurses, a second consultant paediatrician post with a special interest in children’s palliative medicine and a continuation of the education programme in Crumlin. To date, all but one of the recommendations (recommendation 3) have been explored in further detail, and 17 of the recommendations are being progressed. Some of the most significant areas of progress are highlighted below.

The aim of the children’s outreach nursing service is to co-ordinate seamless continuity of care between the acute paediatric unit, community services and the child’s home. The nurse develops strong working relationships with colleagues within the acute and community settings e.g. paediatric medicine, general practice, community paediatric services, disability services, nursing services, specialist adult palliative care home teams, and voluntary services such as Jack and Jill, Laura Lynn, etc. Two additional Children’s Outreach Nurses were recruited in 2017, one in Donegal and one in Dublin. A third new nurse will be appointed in Kerry in 2018.

The Consultant Paediatrician with a Special Interest in Palliative Care leads the specialist paediatric palliative care team in Our Lady’s Children’s Hospital Crumlin. Preparations are under way to recruit a second consultant paediatrician with a special interest in children’s palliative medicine who will be based in Temple Street. This post will be funded by the IHF for the first year, and by the HSE thereafter. The Children’s Hospital Group has agreed that the posts will be located in the New National Children’s Hospital when opened.

A business case has been submitted to the HSE’s office for Nursing and Midwifery Service Development for the continuation of the training courses in Crumlin on caring for children with life-limiting conditions. There is a commitment to provide training to meet the needs of community based adult palliative care teams and hospital based paediatric medical and nursing staff.

The IHF and Laura Lynn have agreed to fund a national coordinator for children’s palliative care for a three-year period. Discussions are underway with the Children’s Hospital Group and the appropriate Integrated/Clinical Programmes on the job description and the full integration of the role into paediatric services.

With regard to the recommendation on the provision of adequate and needs based respite services, discussions have commenced with HSE Primary Care and Disability Services on the integration of children’s palliative care with existing and future in-home and out-of-home services.

The HSE is addressing the lack of available and standardised bereavement care in conjunction with the IHF. A scoping exercise is required to identify existing services and gaps in service provision.

As highlighted by the Evaluation, integration with disability services, primary care, complex care, the new National Children’s Hospital and the paediatric clinical care programme is being pursued as a key part of the implementation of the recommendations.