Whaikaha me te Mate Pukupuku

Disability and Cancer Project

Te Aho o Te Kahu is working with the disabled community reviewing data and evidence on the incidence, experience and outcomes of disabled people with cancer to build our understanding of how we can improve cancer services for disabled people in Aotearoa.

Disability and Cancer Project

There is limited research on the incidence, experience of cancer, and cancer outcomes for disabled New Zealanders but we know disabled people can experience poorer health outcomes.

Our State of Cancer Report published in 2020 showed there are gaps in our knowledge about what cancer outcomes look like for disabled people. This project will help Te Aho o Te Kahu build our knowledge of available data and evidence,and gather insights on the experience of disabled people with cancer.

Te Aho o Te Kahu wants to work with disabled people, and the disability sector to build a trusted, respectful, person-centred relationship that can support our organisation to ensure we have the information we need to begin to influence the equitable delivery of cancer services to disabled people and their whānau in Aotearoa.

Meet the Lived Experience Advisors

In May 2023 we invited disabled people to express their interest in joining the Disability and Cancer Project as one of two Lived Experience Advisor roles.

Thank you to everyone who took the time to submit their interest. We had an amazing level of interest in this work, so we created a third advisory role, and selected three people from the pool of applicants.

What the lived experience advisors do

The Advisors share their knowledge and experiences to inform system planning across the cancer system to reduce inequities to access and services that many disabled people experience. Their role includes:

  • attending project meetings (virtual) as required
  • providing a whaikaha Māori or Pacific disability lens
  • reviewing project documents such as literature review, data, evidence gap and current state analysis
  • advising on stakeholder engagement.

The Disability and Cancer Project team meets virtually for one hour every fortnight.

There is a sign language video on their role below.

Introducing the Lived Experience Advisors

We are delighted to welcome Amr, Dairne, and Wendi to the Disability and Cancer Project as the three Lived Experience Advisors. Together they bring a high level of knowledge, connections and a diverse range of experiences and insights. Their insights, along with available research and some data matching we are doing with the New Zealand Cancer Registry, are building our understanding of inequities and barriers within the cancer system that impact outcomes for disabled people with cancer.

Amr, Dairne and Wendi have generously shared their experiences and why they applied to join this project, which you can read below.

Amr

Amr knew they needed to see a doctor – they just didn’t know how to find one.

The 22-year-old migrant had never known what a GP was when they began to feel unwell. “I grew up in an underdeveloped region and had never been to hospital in my country of origin. So, when I started to get sick here, I had no idea how to seek medical help.”

Amr’s story accessible formats

Dairne Kirton

Being diagnosed with breast cancer changed everything for Dairne.

“I was diagnosed in 2008. By 2010 the cancer had spready significantly, which resulted in a double mastectomy, chemotherapy, and reconstruction.”

It was in the reconstruction phase that things became particularly problematic.

Dairne’s story accessible formats

Wendi Wicks

Wendi has dedicated her life to advocating for people who live with a disability.

Her own life changed when she was diagnosed with a brain tumour in her early 30s. The diagnosis left Wendi with multiple disabilities. “At the time the cancer system was less accessible with few resources or support to help people in my position. I seemed okay but there were gaps - like work.”

Wendi’s story accessible formats

Expressions of Interest - Alternate Formats

Easy Read version (PDF 1MB) or download as a Word document Easy Read version (Word 3MB)

Large Print version (PDF 150KB) or download as a Word document Large Print version (Word 64KB)

Audio file link

Braille version

New Zealand Sign Language (NZSL) videos below.