Nicholas Trust – Update

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

Children are amazing human beings, filled with such raw emotion. They laugh, they cry and they have the unique ability to lift the spirits of everyone around them when all seems lost.

When a child dies, it is often the memory of their strength, determination and laughter that continues to inspire those they leave behind. Nicholas left his footprints on the hearts of all he met. He is the inspiration behind the Trust.

During Nic’s treatment we received the best of care. The JHCH became a home away from home, the staff extended family.

It was in Nic’s final weeks we recognised the need for specialised facilities for dying children and support for their families. We endured Nics’ final 21 days in a busy, acute treatment hospital with newly diagnosed children, patients undertaking treatment with the aim of cure, children’s laughter bubbling down the corridor, steeped in the knowledge we would not be taking our beloved child home. Our immediate and extended family nor his many friends had a place to spend time with him or say goodbye in privacy. There was no room for Nic to pass away with the dignity his life deserved.

As adult palliative care is delivered so well, we imagined the same would be extended to children. In realising this was not the case we knew we could make a difference. We could ensure that others need not endure the pain we felt. We could ensure children and their families could access facilities and services dedicated to their care at their most fragile time.

Our vision: “To establish within our hospitals a supportive environment for all children with a life limiting illness and their families”. To ensure the provision of end of life care in a home like environment”.

Achievements

• The Trust has successfully advocated for and established a paediatric palliative care service for the wider Hunter North Coast region. The paediatric palliative care service comprises a specialist palliative care doctor, a paediatric registrar, a clinical nurse consultant a senior social worker, an occupational therapist and an administrative assistant. Under The leadership of Dr Sharon Ryan a compassionate and understanding team has been recruited to deliver care to all patients within our region with a life limiting illness.
• 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.

The Newcastle permanent charitable foundation has provided funds for the construction of rooms at Maitland, Taree and Tamworth hospitals. These facilities provide a supportive environment for all children with chronic medical conditions who require ongoing, extended hospital stays.

• Funded the construction of, the furnishing, fitting and equipment of an Adolescent palliative care facility at JHCH
• The Trust has established an equipment fund to provide families with immediate access to equipment.
• The One Less Worry project is funded to purchase much needed equipment for home care
• Initiated a paediatric palliative care volunteer service

Adolescent Palliative Care

The Nicholas Trust in collaboration with Hunter New England Area Health and the Newcastle Permanent Charitable Foundation have established Australia’s first adolescent palliative care room within an acute treatment hospital.

The Nicholas Trust was honoured to attend the opening of the Nicholas room at the John Hunter Children’s hospital on June 26th 2014. The room will allow adolescents with complex and chronic health conditions to receive specialised care.

Why Palliative Care

Almost 50% of child deaths are related to life limiting illness.

Up to 400 children and 4,000 direct and close family members benefit from this model of care supporting communities North of the Central Coast. Facilities and services provided help to buffer vulnerable and fragile people from additional pain. Access to trusted, knowledgeable trained and skilled staff enables families to find the support thereby reducing the stress and pain of losing a child. The program encourages early articulation with the palliative care team (diagnosis to death) the bonds built through this support will be strengthened with ongoing intervention within the supportive environment of the JHCH.

The facilities provide multi-faceted outcomes. Feedback from staff and families who have utilised the palliative care rooms reinforce the importance of providing support within the facilities. The rooms allow families to build final memories supported and surrounded by extended family and friends.

The Nicholas Trust continues to provide funds for capital works, equipment and support for families in our region. The model of care encompasses a family-centred approach that recognises the strengths of families and their individuality.

Within the bubble of privacy provided in the facilities of our all our paediatric hospitals (JHCH, Maitland, Taree, and Tamworth) the child and the family gain the strength to carry on with daily life. Close communication with professional, compassionate staff enables families to choose options that are in line with their values, traditions and culture. The well-being of the entire family is improved.

The Nicholas Trust will continue to assist in meeting the needs of palliative care provision in our region. The Adolescent facility funded in partnership with the Newcastle Permanent Building Society Charitable Foundation was officially opened July 2014. This facility will allow young adults with a life limiting illness and their families’ space, privacy, respite and solace during extended hospitalisation and palliative care. The rooms are thoughtfully designed by EJE architects guided by consultation with staff and families.

The trust has currently spearheaded the implementation of a paediatric palliative care volunteer program. Recruitment and training of volunteers has commenced with the trust providing initial funds for this important project.

The trust will continue to lobby for and be involved in initiating best practice in palliative care provision in our region. The Trust will continue to work in partnership with Kaleidoscope, the JHCH and Hunter New England Health to ensure all children and their families are equitably supported through what will be a most difficult time. We can ensure others that find themselves in a similar situation to our family receive the support they need to rebuild and recover.