Head and Neck Cancer Care - A Wicked Problem

New Zealanders with head and neck cancer need better care. The side effects of cancer treatment hits head and neck patients hard. They are more depressed, stressed and anxious than most Kiwis. While they are at their most vulnerable, patients find themselves in an inadequate health system. (Public and private).  People with head and neck cancer need a new focus on their care. Personalised planning and coordinated care should focus on each patient's long term survival, and rehabilitation. New standards of head and neck cancer care are needed across the health sector.

New Zealand researchers have found head and neck cancer patients are the some of the most depressed, stressed and anxious in the population. These psychological states affect their recovery, and quality of life. Head and neck cancer people find it harder to socialise, work and live a full life. A head and neck cancer diagnosis can be devasting for the person involved, and their family and friends. 

At present, the standards of care experienced by head and neck patients in the New Zealand health system are variable. Patient care can be uncoordinated, falling short of accepted standards. Patients have appointments cancelled, rescheduled and cancelled again. One 82 year old patient travelled across Auckland for two hours for an appointment. He was not seen. He was told his appointment was two days ago. No-one had thought to inform him of the change. 

Adverse events in treatment and reconstruction are not reported or managed appropriately. Patients are not fully informed of the impact of such events on their reconstruction and rehabilitation. Many patients are unaware that more can be done for their comfort and appearance. Some patients are forgotten. During their treatment some patients see many different doctors. This lack of consistency causes patients to be distrustful and cynical about their treatment and care. This needs to change. 

Head and neck cancer patients need personalised plans for their long term care and rehabilitation. The care needs to be coordinated to include physical and mental health. Each patient should be offered reconstruction plan at the time of diagnosis. This plan should be regularly updated. The patient should be fully and honestly informed throughout their treatment and care. A relationship of partnership should be established between carers and the cared for.

The 2013 Ministry of Health coordinated the drafting of Standards of Service Provision for Head and Neck Cancer Patients. There is a marked difference in the tone and values expressed when compared to the same standards developed for breast cancer patients. It is time to review the standards, with a new patient focus and shared values.

Head and neck cancer people need better care. This is a "wicked" problem. It is hard to solve because  the health system is complex. Each patient experiences the incomplete, contradictory and changing requirements of their care differently. The wicked problem is resistant. We need to try harder.

The Head and Neck Cancer Survivors' Support Network invites health professionals and organisations to our connecting conversation. Together we can identify the problems. We can articulate the qualities and characteristics of high quality care for head and neck cancer people. We can change the principles and processes on which care is founded. We can regularly monitor and review progress. Together we can ensure throughout their experience each head and neck cancer person receives high quality care.

Our connecting conversation is based on the values of the Head and Neck Cancer Survivors' Support Network. So if you are joining in, be sure to bring with you the values of care and respect. Be prepared to engage, and offer an informed view. Working together we can make a difference.