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Information session Leinster House 19 th April 2012

Home nursing care programme for children with life limiting conditions with dedicated & trackable budget. Information session Leinster House 19 th April 2012. Introductions & Format. Senator Mary Ann O’Brien Professor Charles Normand, Centre for Health Policy & Management, Trinity College

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Information session Leinster House 19 th April 2012

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  1. Home nursing care programme for children with life limiting conditions with dedicated & trackable budget Information session Leinster House 19th April 2012

  2. Introductions & Format • Senator Mary Ann O’Brien • Professor Charles Normand, Centre for Health Policy & Management, Trinity College • Jonathan Irwin, CEO, Jack & Jill Foundation • Jack & Jill families with Sinead Moran, Jack & Jill nurse manager • Sharon Foley, CEO, Irish Hospice Foundation • Q&A

  3. Context • 1,400 Irish children with life-limiting conditions • 350 child deaths each year • Complex needs throughout life • Additional needs as child nears death • Many children have extremely rare conditions • 11% of deaths occur at home • J&J supported 155 children who’ve died at home in past 4 years • Majority of parents want their child at home • More cost effective to keep children at home • €16,422 at home Vs €147,365 in hospital

  4. Jack & Jill model of care • Supported over 1500 children with life limiting conditions since 1997 with home nursing care • Home care plan designed around family’s needs • Last 4 years, supported 155 children who died at home • Raised €35 million Vs €4.5 million HSE since 1997 • Trinity Feb 2010 showed quality and cost effectiveness • Ready, willing, able to look after children up to age 6 • Cross party support Oireachtas Committee Sept 2010 • If Jack & Jill folded, 90 back in hospital (€13.3m p.a.) • Have had Access to HSE and Minister but no Action • Value For Money report is catalyst to ringfence budget for national paediatric home nursing care programme

  5. Jack & Jill Children

  6. Palliative Care for Children with Life-Limiting Conditions in Ireland– A National Policy National policy launched 2010 with some key recommendations: • Hospice at home teams to be developed by the HSE • Family and carers should have access to; • Support of qualified nurses, care assistants and home helps according to their child’s assessed needs (at home if possible) • Direct nursing care and respite • 24 hour nursing particularly when a child is dying • Inpatient hospice beds & a range of respite services for respite should be developed • Consultant and 8 outreach nurses to be appointed to coordinate care

  7. The work of the IHF • Identified and responded to needs at a policy level • IHF and DoH Completed 2005 needs assessment • Assisted in 2010 policy development • Ireland’s first Consultant in Children’s Palliative Care appointed in May 2011 (IHF funded) • Two out of eight Children’s Outreach Nurses appointed - two more nurses expected to be in place by early June. IHF to fund five of eight outreach nursing posts • Training in basic children’s palliative care already provided for over 1,500 healthcare professionals (IHF funded) • Needs assessment conducted in 2010 of respite services for children in two HSE areas (IHF/Children’s Sunshine Home funded with Jack & Jill rep on committee) • National Development Committee on Children’s Palliative Care set up (IHF co chairs this & Jack & Jill on committee)

  8. Current challenges • No national paediatric home nursing care budget in Ireland • Funding is ad hoc, not dedicated & difficult to track • Tremendous resources being spent ‘chasing up’ scarce resources • Inconsistent practices between regions • Hidden cost to taxpayer – greater burden on acute services • Greater stresses to parents who want their children at home and can do most of the care BUT with support

  9. A suggested way forward An opportunity exists to plan for children with life limiting conditions – HSE reform and development of budgeting mechanisms. We would want to see planning for: 1. A dedicated programme for children with Life-limiting conditions • Comprehensive services for children with Life limiting conditions • Develop a Hospice at Home Care programme • Make it available for All children 2. A dedicated budget for children with life limiting conditions • Allocate a dedicated budget • Need ring-fenced budget – using existing budget (reference L. Crowley report) Government can reach budget target in stages

  10. Cost & Benefits • Better coordination will save money • A ring-fenced home nursing budget will keep children out of expensive acute hospitals • Allowing children to be cared for at home • Allowing children to die at home will fulfil family wishes • Providing appropriate support for families will help during their bereavement journey

  11. How much?Illustrative Community Care Budgets All children in last year of life get J&J service €5,800,000 All other children with life limiting conditions get 50% of J&J service € 8,700,000 Illustrative initial budget for community care for children with life limiting illness €14,500,000 Notes: J&J already fund some of this work IHF funded community staff will eventually become part of this team Developments to date have not provided front line staff.

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