JHCH – Paediatric Palliative Care Service

The Paediatric Palliative Care Service at the John Hunter Children’s Hospital provides support to children and young people from the Hunter, New England or North Coast regions with life-threatening or life-limiting illness. The Service also aims to provide education, advice and support to health care professionals providing care to these young patients.

Paediatric Palliative Care Team
The Paediatric Palliative Care Service comprises of a specialist paediatric palliative care doctor, a paediatric registrar, a senior nurse, a senior occupational therapist, a senior social worker, bereavement co-ordinator and volunteers.

What we do
The Service requires a referral from a medical practitioner in order to see a patient. When the Service has had a referral, the existing health-care professionals will continue to be the primary health-care providers to the patient and family.

Once there has been a referral to the service, we will generally meet with the patient, family and treating health-care professionals and gather information about the current and likely future issues. Such a meeting may involve a home visit.

Ongoing involvement may be:

  • Directly via home visits, out-patient clinics, telephone calls or video/teleconferencing;
  • As a consulting team if the patient is admitted to hospital; or
  • Indirectly via regular contact with local general practitioners, general and specialist Paediatricians and adult palliative care services providing care to the child or young person.

The level of support required will vary between each patient and family/carer.  It will also vary from time to time for each patient and family/carers.

Involvement of our Service may allow a patient to be cared for at home at the end of life if that is what the patient and family/carers wish. If hospitalisation is required, involvement of our Service may help with the timely management of symptoms and transfer to a ward setting.

The Service will also assist with the provision of bereavement support for families/carers whose child has been referred to our Service and has subsequently passed away.

NSW Paediatric Palliative Care Programme

The Paediatric Palliative Care Service also provides in-home volunteering assistance for families who request that support. Our volunteers and families are carefully matched to ensure the very best experience. Volunteers and families often find the experience rewarding, watch our Paediatric Palliative Care videos to learn more.

Contact us
If you feel that the Palliative Care Service might be helpful in your circumstances, you will first need to discuss this with a doctor involved in the child/young person’s care and obtain a referral to the Service.

If there has been a referral, please phone and a leave a message with our Secretary on (02)49 213387 or email PaedPallCare@hnehealth.nsw.gov.au and one of our team members will contact you. Other contact arrangements will be made on a case-by-case basis.

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You matter because you are you, and you matter to the last moment of your life.
Dame Cicely Saunders


The Trust was established in July 2005, it has received tremendous community, political and medical support.


In August 2010 two uniquely designed and purpose built palliative care facilities were opened at the JHCH along with a parent retreat and refurbishment of the school rooms.


Nicholas Butters ~ Born 6th July 1990 ~ Taken to Heaven 8th December 2004


The generous support of corporate sponsors and parters has assisted the Trust in achieving its goals.

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.