Following a stage three cancer diagnosis in 2014, six months of chemotherapy, five weeks of radiation and a double mastectomy, Isobel Stout felt lost when her treatment was complete.“
After such intensive interaction with medical staff for so long, suddenly you’re on your own.
So, you think – now what? You don’t quite know what to do next or where to go,” she says. “It’s understandable that the clinical side of things must finish at some point, but I felt there was a huge amount of aftercare needed that just wasn’t being provided.”
Eager to share her experience and help in any way she could, Isobel attended the Cancer Care at a Crossroads conference in Wellington earlier this year where she bumped into the now former chair of the South Island Cancer Consumer Group, Marj Allen. “I was chatting with Marj about how I could put my 10 cents worth in as a consumer, rather than just writing letters to DHBs. That’s when she told me the South Island Cancer Consumer Group was looking for more members, so I applied, and here I am.”
Isobel, who is a Senior Environmental Health Officer at Christchurch City Council, said being a part of the group has been a rapid learning curve. “It’s a tremendous opportunity to learn from others in similar situations, which I think is where our strength comes from. We are a diverse group and while the one thing we have in common is that we’ve had cancer, we all have really different backgrounds and perspectives, which is enormously valuable. I learnt very quickly that it’s not about me and my story – it’s about focusing on the collective issues.”
Isobel also became involved with the charity Pinc and Steel Cancer Rehabilitation Trust and even biked up Coronet Peak Road to fundraise for the organisation. “I would love to see the amazing services provided by these charities picked up at central government level and integrated into the whole care package. Post-treatment care is just not funded, resourced or focused on enough and we really want to change that.”
The South Island Cancer Consumer Group is currently working with the Southern Cancer Network, part of the South Island Alliance, to increase consumer engagement and further enhance patient-centred care. Some members of the group are assisting with quality improvements projects that have been initiated as part of the Health Quality and Safety Commission’s co-design programme, which involves consumers as part of the project team.
One of the projects involves exploring what support services could help cancer patients at their appointments. The idea came about when a woman living on the West Coast had to commute to Christchurch for regular treatment, but her family couldn’t accompany her. English was not her first language and the Cancer Society found a volunteer to attend appointments with her, providing company and support, as well as assistance with any language issues. “It’s just being a supportive ear or making notes or prompting questions at consultations, that sort of thing. It can be really hard to think straight when you’re talking to the specialist, so an ongoing service offering to pair up patients with potential advocates and support people would be invaluable for some people.”