“I just want to get in and out of my posh new jacuzzi bath!”
Grasping a wider understanding of health from cancer patients themselves
Having graduated in exercise and health science and working in exercise referral, I completed extra training to specialise in the use of physical activity as a tool to support patients throughout their cancer pathways.
In order to secure funding for a specially-designed programme, the commissioners demanded measurable KPIs to demonstrate worth; quality of life assessments were used to help strengthen our case. One of the questions in the QoL assessment asks patients to rate their health on a scale of 1 to 100. I had assumed my patients would rate their health poorly — after all, each one had been diagnosed with this life-threatening, if not life-limiting, disease. The very existence of their cancer diagnosis meant they were in poor health, yet these patients seldom referenced their disease. Health, for them, was their ability to live as well as they could despite their diagnosis.
Linda* is a case in point here. Having asked her to rate her health, despite a stage 3 breast cancer diagnosis, Linda said 70/100. I then asked, “what would increase that number by 10”? Again, I assumed the response would be “to not have cancer” or “to get the all-clear” — after all, not having cancer would equal health progression. Not so. For Linda, an increased score would not mean being cancer-free but being able to get in and out of her jacuzzi bath she had bought for her revamped bathroom. The surgery Linda had undergone meant she had lost the physical strength required to lift her own bodyweight in or out of the bath.
This became the focus of our rehab, using exercise to build back the strength needed for this relatively simple task that most (healthy) people take for granted. After 10 weeks on the programme, and despite ongoing chemotherapy, Linda proudly announced “I had a bath last night!”. The whole class celebrated with a round of applause and a cheer.
Despite the fact Linda still had cancer and continued to receive intense chemotherapy, she had achieved an increase in her health merely through her ability to have a bath. The exercise programme had not equipped Linda with the ‘weapons’ to ‘beat’ cancer, but it had allowed her to reclaim her independence and live positively alongside her cancer. This was a lightbulb moment for me and the programme: patients were not just their diagnosis and improving health was no longer anchored to the presence of cancer. It was all so much broader than that. Patients themselves valued the improvements in their everyday tasks, more so than a positive change in their disease status. Going forward, the programme needed to acknowledge this and so that follow-on question — how to improve health status by 10 points — is now standard protocol in our programme and the patient’s answer informs the exercise prescription we now provide.
Originally, the programme had assumed a clinical aim, but what Linda’s case had shown was that health programmes generally need to be aware of the multiple contexts within which health status is understood by patients themselves. Sure, the clinical perspective is one determinant, but there are many more. It is hoped that the MPH will introduce me to these broader perspectives so that individual assumptions do not limit any future health programmes I will be involved with. Working within public leisure I’d like the course to equip me with further knowledge and skills to bridge the gap between the clinical and non-clinical setting to allow for better collaboration and co-design within health intervention programmes.
Linda’s achievement will always remind me to start with the person you are trying to engage, not the condition.
*Name changed for confidentiality
