Diana Ayling leads the Head and Neck Cancer Support Network
My name is Diana Ayling. I am the Chair of the Head and Neck Support Network. We connect, support and advocate for people affected by head and neck cancer.
In 2018, Patient Voice Aotearoa called for a unified approach to the New Zealand Parliament to fund new medicines. I created a petition to fund Keytruda for the treatment of advanced head and neck cancer and to improve the standard of care for those affected by head and neck cancer. I presented the petition in November 2019.
In March 2021, I appeared before the Health Select Committee with Peter O’Hara whose cancer story is published on The Medicine Gap, to speak to my submission. I don’t think there was anyone there that day who did not empathise with the position of both Peter and myself.
Peter, as you will know from his story, was lucky to have a medical professional recognise his need for immunotherapy and take action on his behalf. He was fortunate to have the funds to purchase a life-saving medicine.
I was diagnosed with adenoid cystic carcinoma (ACC) in August 2014. I underwent surgeries (three) to remove the cancer, and radiotherapy to prevent recurrence in the original site. Later the cancer advanced to my lungs. I underwent two lung surgeries in 2017. I sit in a sort of limbo, not getting better, but not getting worse. My oncologist suggests an immunotherapy approach might be best should my cancer advance.
After my cancer diagnosis, there was strong advocacy from the late Blair Vining who died of bowel cancer, and his widow, Melissa, for the creation of a central cancer agency to provide policy advice to the government. I am involved in providing a consumer perspective for Te Aho O Te Kahu (the Cancer Agency).
There is much work to be done to fully understand the needs of those affected by cancer in Aotearoa New Zealand.
If you have head and neck cancer, like Peter and I, then you find yourself in an even more difficult situation. Head and neck cancers account for approximately 6% of all cancers. Many of our head and neck community are elderly, and gravely ill. Head and neck cancers are on the rise due to the human papillomavirus (HPV). HPV affects younger people, mostly men. The treatments currently available are harsh, and leave patients with significant long term issues from treatment.
The head and neck cancer community do not have the numbers of people, nor the funds, to launch a nationwide campaign to fund immunotherapies. We are unable to consistently and aggressively hound the government for political intervention. We are destined to wait our turn. That could be a very long wait.
In the Patient Code of Rights, ‘Right 4’ states that New Zealand citizens have the right to services of an appropriate standard. There is some additional explanation about this in sub clauses three and four.
“(3) Every consumer has the right to have services provided in a manner consistent with his or her needs.
(4) Every consumer has the right to have services provided in a manner that minimises the potential harm to, and optimises the quality of life of, that consumer.”
Right 4 (3) tells us that patients have the right to the health care services they need. This includes access to services that administer the therapies for treatment and cure. So, if a drug is unfunded, and not available in the public health system, and you can afford to buy it, you should have the right to access public services to administer it. I know this is unfair to those who cannot afford to pay, but a right is a right. It is not to be tossed aside because it reveals the truth about our health system.
Right 4(4) tells us that patients have the right to access services that minimise harm (real or potential) and that treatments should focus on quality of life. That means we have to ask patients what they want for quality of life, not tell them what they will get.
After general agreement that my own reconstructive surgery was less than ideal, all communication with the treating clinicians ceased. I say with certainty that for five years or more no one from the healthcare service inquired after my quality of life.
An appropriate standard of care, whether it be unfunded medicines, surgery, radiotherapy or reconstruction of difficult dental needs is not determined by discretion of healthcare professionals. It is an absolute standard. You should receive what you need to avoid harm and to improve quality of life.
Discretion is not part of the decision-making process, unless it is clear and open to public scrutiny. The healthcare system is not a secret set of decision-making processes for those in the know. It is an open, publicly funded system designed to be accountable to all.
If there are not sufficient resources to provide an appropriate standard of care, this should be known. Citizens have a right to know that their health care dollar does not stretch far enough, that harm is occurring and people report poor quality of life following treatment.
If we need to provide more, we need to know why, and to question resource allocation in an old and tired healthcare system. Nothing should be beyond questioning and change.
We live in a time of huge technological change. Technology is affecting all aspects of modern life, including healthcare. Many industries embrace technologies recognising the benefits of doing things more efficiently and better. Those who adopt technology do so because they believe they can do better for their customers and clients. Our healthcare system should be embracing technologies in data management, treatments and systems, not standing cold and flat-footed at the start line.
Many cancer patients have encountered “postcode” care. This is where treatments and services are available in some regions but not available in others.
What do we, as citizens of Aotearoa New Zealand, want from our healthcare system that we pay for? Do we want it to be reliable, consistent, and effective? Do we also want it to be flexible, adaptable and light-footed when the need arises?
Staying where we are, doing the same thing, bringing about the same outcomes for patients is not where we want to be. We need to change.
Our nation, Aotearoa New Zealand, needs to commit to fund and deliver “appropriate” care for our citizens. Our healthcare system needs to commit to deliver “appropriate” care to avoid harm and ensure quality of life for patients.
Healthcare in Aotearoa New Zealand cannot be the same as a postcode lottery. Spin the wheel and you win or lose. There should be no wheel, and no need to spin.