Freelance journalist and former ABC broadcaster Julie McCrossin was diagnosed with in 2013. Part two of our interview with Julie focusses on her head and neck cancer videos as a resource for established and new clinicians, and a consumer perspective on head and neck cancers care.
The thing about head and neck cancer is it is multidisciplinary. Multidisciplinary treatment began with head and neck cancers because it is generally acknowledged to be one of the toughest cancers due to the comprehensive nature of its impact. Because it is on the head and neck, you cannot hide what has happened to you. Secondly, it affects basic life functions; speaking, swallowing and eating. I lost speech completely for several months and spent one year getting it back. I lost swallowing almost completely, I was only on liquid food.
For a new trainee surgeon, radiation therapist or nurse coordinator entering this field for the first time, these videos are a quick way to hear the latest innovations from leading clinicians across the the whole multidisciplinary team. Because MDMs are quick and focused on the individual patient, people tend to focus on their area of expertise. That's natural in a time pressure health system. This enables you to spend 30 minutes with each of the team members and get the latest information. That is why it is good for new team members.
They’re also for experienced MDM members. I met a surgeon who had been working in head and neck cancer for a number of years and [who] had never entered a radiation bunker. I find that startling. Our health system has become so specialised, [in order] to bring high-level expertise to each individual role, that a surgeon or a radiation oncologist may not have ever seen what a speech pathologist does to make [their] patient regain speech and swallowing. You may not have seen what is in the videos; a new tool for measuring the strength of the swallow function and assisting the person to redevelop it. Even working in a multidisciplinary team, you are not necessarily up-to-the-minute with what the latest technology or practices are in your field.
While it will take a certain humility for an experienced head and neck cancer team member to view these videos, based on direct feedback from LinkedIn and Twitter I am confident [of their value to clinicians]. [And] I’ve built up 11,000 followers on Twitter, [of whom] over 80% are members of multidisciplinary cancer teams in English-speaking countries.
Head and neck cancer clinicians feel that it is not just their patients who get insufficient funding, research and care; they feel abandoned, too. They are devoting their lives to a patient group that gets hardly any attention and very little funding for research.
They are thrilled that someone with a history at ABC TV and radio has produced a very high-quality set of videos with a professional film-maker. That someone is finally paying attention to their work. Some of them acknowledge that they have failed to attract sufficient attention from funding agencies and the health sector, and that they need patients and families to join with them to lobby for higher awareness and more investment.
I think it is incumbent upon clinicians and patients in the cancer community to advocate for the allocation of funding for research on the basis of evidence of need. We want evidence-based treatment for our psychological and our physical health treatment. One of the videos is on mask anxiety and research that has been funded for just under $600,000 by Cancer Australia to find an alternative. I'm thrilled to say I have played a role in making that happen. A significant proportion of patients find it hard and there are no protocols on pre-education. There is no support prior to treatment. And you have it every day for 30 days at a minimum. I'm not surprised there are suicides. Many of the suicides are linked to the side-effects of radiation. It is a really tough area.
The key message from head and neck cancer patients is to take care of our psychological well-being during treatment as well as after treatment. There are two videos on managing distress. Because, its impact on our physical appearance and our basic functions of speaking and swallowing are causing huge amounts of emotional suffering and we have a very high suicide rate. So, insuring that everyone takes responsibility for patients’ emotional health and managing distress is critical.
See the videos here: https://headneckcancerforum.com/