The coalition had highlighted their concerns over the slow progress of a number of key recommendations in the ‘Evaluation of the Children’s Palliative Care Programme’ report launched by the Minister in November 2016. The priorities for progress included re-establishing a National Development Committee, the extension of the Clinical Nurse Co-ordinators Service for children with life-limiting illnesses, the development of clinical palliative care services in our children’s hospitals and the need for an agreed roadmap for further development of priorities in children’s palliative care.
Sharon Foley was joined by Dr. Mary Devins, Consultant Paediatrician with a Special Interest in Paediatric Palliative Medicine, Dr. Maeve O’Reilly, Palliative Care Consultant, St. James Hospital and St. Luke’s Hospital, Claire Quinn, Lecturer and Programme Director MHSc /PGD Health Sciences (Children’s Palliative/ Complex Care) at the School of Nursing and Midwifery, NUI Galway and CEO of the Jack and Jill Foundation, Hugo Jellet.
Following the meeting, Sharon Foley said: ‘We were very encouraged by our meeting with Minister Harris today and welcome his commitment to making immediate progress. He has agreed that a new interim National Development Committee (NDC) on Children’s Palliative Care will be put in place over the coming weeks with the full NDC committee established by the summer. This new NDC is to agree a new set of national priorities by the Autumn. At the meeting, both the Minister and HSE agreed that both bereavement care and respite care for children nearing end of life – both in and out of the home – are particular areas requiring joined up thinking and attention.’
‘We met to discuss priorities in children’s palliative care and the Minister heard directly from consultants in the area on the challenges facing them in the delivery of care to children requiring palliative care. The leadership to date shown by the clinicians, HSE and charities in this area is remarkable and needs to continue. The Irish Hospice Foundation will also continue to support the Children’s Palliative Care programme in the most effective way possible. This year, we will fund the recently appointed consultant in paediatric palliative care in Temple Street, a new national programme manager for children’s palliative care and supervision for existing outreach nurses.’
‘This is a prime opportunity to reignite the energy and enthusiasm which surrounded the implementation of the first national policy on children’s palliative care and I look forward to continuing to work with the Minister, his department and the other key providers of children’s palliative care to help deliver the next phase of Children’s Palliative Care. Nearly 4000 children are living with life-limiting illnesses in Ireland today and many have definitive palliative and end of life care requirements. It is vital there is no further delay so these children and their families can get the care they both need and deserve.’