John Hunter Children’s Hospital
– News Update

The Paediatric Palliative Care Service are currently supporting 58 families, as well as providing bereavement support for many more families.

  • Of the current “active” 58 families, 40 live in the Hunter Region (including Newcastle, Lake Macquarie, Maitland, Port Stephens, Singleton areas).
  • 7 are in the New England area (Tamworth and surrounding areas)
  • 6 are on the Mid North Coast
  • 4 on the Central Coast
  • 1 family is currently overseas

We highly value our “Nicholas Trust” Paediatric Palliative Care rooms, and continue to have children and families who elect to have their “end of life” care in these rooms, as a homely space where families, siblings and friends can visit, while having the support of hospital staff.  Many people can share meals together and stay overnight.  We continue to care for children, and their families, in these rooms, from new born babies to older teenagers, and receive overwhelmingly positive feedback from both staff and families about these facilities.

In the last financial year, we have been fortunate to receive funding support via the Nicholas Trust equipment fund, in addition to the joint Nicholas Trust / NPBS “One Less Worry” project from the year before.

Through the Nicholas Trust Equipment fund in this financial year alone, we have been able to;

  • Fund “fingerprint jewellery” pendants for 23 bereaved Paediatric Palliative Care families, as well as supporting NICU to set up their own fingerprint jewellery service, which they now fund
  • Hire a hospital bed for a child for home who lived out of area for accessing our local HES hospital beds
  • Fund mirror modifications to a teenager’s car and a driving lesson in a modified vehicle, for a teenager who was applying for her P’s but needed modifications following cancer treatment
  • Purchase a bed wedge for child who wanted to stay in their own bed, but needed to be elevated
  • Purchase a more supportive car seat for children (with tilt, head supports) who have reduced head control following their disease processes
  • Purchase a number of “pulse oximeters” so families can check their children’s oxygen saturations, heart rate etc at home, and discuss with the team, rather than having to come to hospital to have this checked
  • Purchase a suction machine to loan to families, while awaiting for supply via the health equipment funding bodies (again this enables some children to remain at home, with supervision with our service, preventing unwanted admissions to hospital)
  • Purchase a “Patslide” for a child who was being cared for at home during end-of-life to make transfers more comfortable from bed-chair
  • Purchase a hoverMatt machine for the JHCH wards, (with the individual wards covering the costs of the consumables), to assist with children who find transferring difficult or stressful
  • Provide pressure care mattresses, hospital beds, wheelchairs, portable ramps, portable oxygen concentrator from our loan pool, to enable children to be cared for at home
  • Refurbish the Nicholas Trust rooms with new crockery, repair a parent bed and replace a bar fridge
  • Currently consider a monitor for a child who has neurological impairment

“I would like to pass my personal thanks on to the Nicholas Butters Trust for what they do, as the support they provide is unbelievable”

Dr Paul Craven, Acting Executive Director, Children, Young People and Families, Hunter New England LHD and current Chair of the Nicholas Trust Equipment Fund

Changing Lives Today!

It is so often, through adversity, that we are challenged to make a difference. We could not save Nicholas, but we could ensure support for families who find themselves in a similar situation.