John Hunter Children’s Hospital
Paediatric Palliative Care Service
Projects Update – May 2019

Nicholas Trust Equipment Fund
Since the “One Less Worry” Project in 2017-18 and partnership between The Nicholas Trust and the Newcastle Permanent Charitable Foundation, we are regularly using the equipment funded (including hospital beds, mattresses, portable oxygen cylinders, wheelchairs, cushions, baths etc) with children and their families in the community. This fund also supports the provision of fingerprint jewellery, for bereaved families, and we are currently undertaking an update of the Nicholas Trust Rooms at JHCH, with thanks to the ongoing and generous support of the Nicholas Trust.

We are now fortunate enough to be able to offer in-home volunteers to families who live in Newcastle, Lake Macquarie, Port Stephens, Tamworth and Armidale. These volunteers are supported locally via their Palliative Care Networks, as well as training and support through the Paediatric Palliative Care Service and the Volunteer co-ordinator at JHCH.

Pastoral Care
We have a short-term Pastoral Care Project April-June 2019 to look at how we support our families from a spiritual, emotional perspective and develop some tools that our service can use to ensure we do this better.

The PPCS continues to use videoconferencing, with families in their own homes, to provide in-home support and intervention, when required.
Maternal Foetal Medicine : The PPCS are working with the MFM service to meet families before their child is born, when antenatal testing has indicated that their baby will be born with a life limiting illness.

Last Days of Life Toolkit
Dr Sharon Ryan is leading a Statewide collaboration around a paediatric version of this toolkit, to ensure there is a standardised approach to dying patients across NSW. Tools and resources are being developed to ensure dying paediatric patients are recognised early, receive optimal symptom control, have social/spiritual/social needs addressed, patients and families are involved in decision making and bereavement support occurs.

In May 2019, we conducted a full day education session, funded by Ministry of Health, to support and educate health professional across the district (from Newcastle to Tamworth and Armidale) about Paediatric Palliative Care. We had 70 attendees from a wide range of areas, both clinical and geographical, who gathered together to learn more about caring for children with life limiting illnesses, and already have a waiting list to attend the next education day.

In late 2018 we ran a specific education day for Allied Health staff in Newcastle, which was supported by PEPA (Program of Experience in the Palliative Approach). We had a wide range of attendees from public health and private practice, including NDIS therapists, and collaborated together about how best to support our families.

We are also accommodating a range of undergraduate students (medical, social work and occupational therapy) to contribute to their educational knowledge and experience of working with children with life limiting illnesses (and their families).

EPEC (paediatrics) training
Two of our staff, Dr Sharon Ryan and Amy Wethered (CNC) have now participated in the international Paediatric Palliative Care education training known as EPEC – Education in Palliative and End-of-life-Care. This training uses a train-the-trainer model, to enable them to educate other interdisciplinary teams in this approach, thus optimising our outreach and education provided, through interactive lectures, case studies, role plays and group activities

Our service has a quarterly newsletter that we send out to families and relevant services about updates and information. If you would like to be on the mailing list for our Newsletter, please contact our social worker Shaun Wood.

Outreach trips
We are planning a team trip to Tamworth to do some outreach home visits and clinics mid 2019.

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.