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Pre-budget Submission 2019

Priorities for Children’s Palliative Care

A coalition of children’s palliative care service providers and consultants in specialist paediatric palliative care is calling on the Government to prioritise the next steps in Children’s Palliative Care programme in Budget 2019. Crucially, they encourage the development of multi-annual budgeting to prevent a stop-start approach to these vital services.

The group made up of Sharon Foley, CEO Irish Hospice Foundation (IHF), Dr. Mary Devins, Consultant Paediatrician with a Special Interest in Paediatric Palliative Medicine, Dr. Maeve O’Reilly & Dr. Marie Twomey, Consultants in Palliative Medicine, Our Lady’s Children’s Hospital Crumlin 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, Orla O’Brien, CEO, LauraLynn, Ireland’s Children’s Hospice and interim CEO of the Jack and Jill Foundation, Carmel Doyle launched their Pre-Budget Submission today.

The group calls on the Government to start planning in 2019 for a more strategic approach to future budgets to address children’s palliative care needs, in order to achieve a full and comprehensive service provision and support network throughout the country.  Commitment to multi-annual budget provision would be a practical way to ensure the smooth roll out of services. Without such an approach, the group says, development will be – at best – piecemeal and uneven and at worst will undermine many of the very welcome positive developments.

Their priorities for progress in Budget 2019 include:

  • 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 services in our children’s hospitals
  • Effective integration of the Children’s Palliative Care Programme and service providers, including the funding required for community-based voluntary services.
  • The need for an agreed roadmap for further development of priorities in children’s palliative care and secure funding.

These priorities have been derived from recommendations for service development identified in the recently published National Model of Paediatric Care and also include further recommendations arising from the Evaluation of the Children’s Palliative Care Programme, published in 2016.

Earlier this year, the coalition met with the Minister for Health Simon Harris to highlight their concerns over the slow progress of a number of the key recommendations in the National Evaluation report, which was launched by the Minister himself.

Speaking today 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. He 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.

These developments are welcome but there are further unmet needs that need to be addressed. 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.

Dr. Mary Devins commented:

We have the evidence from the evaluation and from parents, children and wider families of the benefits of the current service provision for children’s palliative care.  We want to see the best possible services available to all children with life-limiting illness and their families in every county in the country and the reassurance that these services will continue into the future.  At their time of greatest uncertainty, what these families need is certainty – certainty that their child will receive the best care and that they will receive the best support.  We ask the Government to help provide that certainty in Budget 2019 and in future years

In Ireland currently:

  • Approximately 370 children die each year with life-limiting conditions (LLC).
  • Of these deaths, 57% occur in the first year of life.
  • Estimates indicate there are nearly 4000 children with LLC in Ireland today[1].
  • These children have exceptional and unique healthcare requirements and it is estimated that at any one time 50%[2] (approx. 1,960) of these children will require active paediatric palliative care.
Read the Evaluation of the Children’s Palliative Care Programme here.
[1] Accessed Oct 2017.
[2] Fraser LK, Miller, M Hain, R, Normand, P., Aldridge, J., McKinney, P.,Parslow, R. (2002) Rising National Prevalence of life-Limiting Conditions in Children in England. Pediatrics 2012;129:E923-E929.