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Webinar summary: The Hidden Health Crisis

On 6 October 2021, Redkite launched the results of its recent national family needs survey in a report titled The Hidden Health Crisis – Childhood Cancer Needs More Than Medicine.

Here you can read a summary of the webinar, watch the summary video and download Redkite’s report.

On 6 October 2021, Redkite launched the results of its recent national family needs survey in a report titled The Hidden Health Crisis – Childhood Cancer Needs More Than Medicine.

Launched via a live webinar hosted by Redkite Chair, Mark Rigotti, the report provides a sobering snapshot into significant gaps that still exist in supports available to families going through childhood cancer. In the webinar, we shared key findings from this report, heard from two families who have experienced childhood cancer and were joined by key health and business leaders in our discussion of how we can close the gaps in support critical for family survival.

What follows is a summary of the webinar.

You can download a copy of the report here: The Hidden Health Crisis – Childhood Cancer Needs More Than Medicine.

Support for mental health is critical

The Hon Dr David Gillespie MP, Minister for Regional Health

Prior to his political career, Minister Gillespie was a practising doctor in regional areas for 33 years. He knows about the challenges that cancer brings, especially for families who leave away from major hospitals.

Via a pre-recorded message, Minister Gillespie spoke of the impact that cancer has on children and their families, particularly on those in regional areas who have more limited access to the support services they might need. He applauded Redkite for this research and reiterated that it is research like this that improves outcomes for families.

Key findings of the Report

Monique Keighery, Redkite CEO

In Australia 90 children a month are diagnosed with cancer. The immediate and ongoing core focus is on medical survival for these kids and families, and we are so lucky to live in a country with some of the best treatments and survival rates in the world. However, as Monique shared in the webinar, this has come at a cost.

What people don’t think about, and what isn’t talked about enough, are the non-medical impacts of cancer and the extreme pressure that childhood cancer puts on each family member.

It is a complex trauma that disrupts and impacts almost every aspect of life, for all family members – for weeks, months, years, and too often a lifetime. This is why Redkite exists, and why our family support programs are so important.

Last year, Redkite set out to identify and quantify the gaps in support for families; to understand the scale of the problem, identify who was missing out and what kind of support they needed.

Five significant areas for concern were identified:

  1. The greatest gaps in support are after treatment ends and in bereavement
  2. There are clear gaps in emotional and mental health support across the whole family
  3. In particular, support is lacking for the emotional and mental health of the child living with cancer
  4. The gaps are even more significant for their siblings
  5. There is a need for greater connection with other families

Families were at even more disadvantage if:

  • Anyone in their family had to relocate for treatment
  • They lived in a regional or remote location
  • They were the mother of the diagnosed child
  • The diagnosed child had experienced a relapse
  • They were Aboriginal and Torres Strait Islander

Children’s cancer needs more than just medicine, cancer continues well beyond the hospital, and our report shows this loud and clear.

We estimate 10,000 mums, dads, diagnosed children and their siblings are missing out on the specialised emotional and mental health support they need to cope with childhood cancer.

Now, more than ever, this situation cannot remain hidden. We need to shine a light on it, change the narrative around childhood cancer and stand up for the non-medical needs of these kids and their families. Redkite is committed to lead change on how holistic support is provided and securing support to implement solutions.

The pressure that cancer puts on families is heartbreaking

Ms Ged Kearney, Shadow Assistant Minister for Health and Aging

Prior to her career in politics, Ms Kearney worked as a registered nurse and understands the challenges families are facing within the medical system. Via a pre-recorded message, she shared her experiences with childhood cancer and her observations of her time as a nurse.

“Doctors, nurses, the whole health system focusses entirely on the child, and their survival and getting them well – and that’s a good thing. But at the end of that journey, in particular, there’s a lot of leftover and pent-up emotions and issues that one has to deal with and that has been dropped by the health system. I know, I’ve been there. You just sign that discharge sheet and say goodbye and you turn your head to the next person walking through the door.”

The families behind the statistics

Georgie Gardner, Nicky Sherlock and Trish Carpenter

Redkite’s report quantifies the distressing reality of what families face around the country every day. The extent to which a child’s cancer drains families’ finances, taxes relationships between family members, isolates them from the community and strains their mental health.

Behind every number, there is a family that is going through this hidden crisis. Redkite Director, Georgie Gardner, interviewed two mums, Nicky Sherlock and Trish Carpenter, who shared their stories today and discussed some of the challenges that they had to face.

Nicky’s family live on a small farm in rural WA and in September 2019, their lives changed overnight when their son, Jamie, was diagnosed with leukaemia. Living 3 hours from Jamie’s treating hospital compounded the already significant challenges of having a child with cancer. Nicky’s daughter in particular felt extremely isolated from her mother, felt resentment towards her brother and continues to face her own emotional and mental health challenges.

Trish has identical twin boys, Thomas and Cameron. Tom was diagnosed with medulloblastoma in December 2017 when the boys were almost seven. He died 13 months after diagnosis. Trish shared the challenges of coping with Tom’s illness while protecting Cameron from some of the distressing things they experienced as a family. Trish also shared the beautiful ways the family treasures Tom’s memory and creating new and positive experiences for Cameron.

Both women spoke so eloquently about the challenges that face them but also showed that there is hope for their families and for all families who have a child with cancer.

A joint responsibility to close the gap

Steven Cain, Coles CEO

As Redkite’s Premier Partner for the past 8 years, Coles has played and continues to play a crucial role in helping us transform non-medical cancer care in Australia. Coles CEO, Steven Cain, called for more to be done to support the 10,000 family members who have emotional and mental health needs.

“As a society, we have a joint responsibility to care for the more vulnerable in our communities and I urge politicians and government stakeholders, alongside leaders in the corporate world and the public, to join Redkite and Coles in closing this gap.”

Closing remarks

Mark Rigotti, Redkite Chair

The closing remarks were made by Redkite Chair, Mark Rigotti. He stated there are several recommendations in this report that address increasing family support in hospitals and when they go home. He said he looked forward to working in partnership with all sides of government, donors and funders, the media and the public to address these recommendations and improve non-medical care for children with cancer, their brothers and sisters, and their mums and dads.

To learn more about Redkite’s report The Hidden Health Crisis – Childhood Cancer Needs More Than Medicine or discuss how you could help us improve the non-medical care of children with cancer and their families, feel free to contact us.

Read the full report here.

Download report

Full webinar recording

The hidden health crisis – children’s cancer needs more than medicine

Research
5th Oct

The hidden health crisis – children’s cancer needs more than medicine
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