LauraLynn call on Government to prioritise Children’s Palliative Care Programme in Budget 2019

12 Jul
2018

LauraLynn, alongside a coalition of other children’s palliative care charities, academics and consultants in specialist palliative care, have called on the Government to prioritise next steps in the Children’s Palliative Care Programme ahead of Budget 2019.

The specialist group which includes representatives from LauraLynn Children’s Hospice, the Irish Hospice Foundation, the Jack and Jill Foundation and specialist paediatric consultants, are asking the Government to develop a strategic approach to future budgets which will address children’s’ palliative care needs in Ireland. The coalition hopes to work together to help provide a full and comprehensive service provision and support network throughout the country for children with life-limiting conditions (LLC). A commitment to a multi-annual budget provision would be a practical way to ensure the smooth roll-out of services and allow the delivery of consistent, quality and vital care in this field.

Following an assessment of the 2016 Evaluation of the Children’s Palliative Care Programme, a number of areas of focus have been highlighted. These areas are of significant interest due to the slow progression and unmet needs which need urgent action.

A number of priorities for progress in Budget 2019 have been pinpointed, including:

  • Re-establishing a National Development Committee
  • The employment of the National Programme Manager
  • The extension of the Clinical Nurse co-ordinators service for children with life-limiting illnesses
  • The further development of clinical palliative care service in our children’s hospitals
  • Effective integration of the Children’s Palliative Care Programme and service providers, including the funding required for community-based volunteer services
  • The need for an agreed roadmap for further development of priorities in children’s palliative care and secure funding

Sharon Foley, CEO of the Irish Hospice Foundation said: “We were very encouraged by our meeting with Minister Harris in February and his commitment to implementing the next steps of the Children’s Palliative Care Programme. Minister Harris agreed to a new interim National Development Committee (NDC) on Children’s Palliative Care being put in place as well as the full NDC committee being established by the summer and a new set of national priorities being drawn up by the autumn”.

Currently in Ireland:

  • Approximately 370 children die each year with a life-limiting condition (LLC)
  • Of these deaths, 57% occur in the first year of life
  • Current estimates indicate there are 4,000 children in Ireland living with LLC
  • Each of these children have exceptional and unique healthcare requirements and it is estimated at any one time, 50% of these children will require active palliative care

A full copy of the pre-budget submission is available here.

Access to the Evaluation of Children’s Palliative Care Programme can be found here.

 

Thank you to each member of the specialist coalition who contributed to this pre-budget submission:

  • Orla O’ Brien, CEO of LauraLynn, Ireland’s only children’s hospice
  • Sharon Foley, CEO of the Irish Hospice Foundation (IHF)
  • Carmel Doyle, interim CEO of the Jack and Jill Foundation
  • Dr. Mary Devins, Consultant Paediatrician with a special interest in children’s palliative medicine
  • Dr. Maeve O’ Reilly and Dr. Marie Twomey, Consultants in Palliative Medicine at Our Lady’s Children’s Hospital Crumlin and St. Luke’s Hospital
  • Clare Quinn, Lecturer and Programme Director MHSc/PGD Health Sciences (Children’s Palliative / Complex Care) at the School of Nursing and Midwifery at NUI Galway
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