Ally was enjoying a successful career as a firefighter in Scotland when he was diagnosed with a form of blood cancer (myelodysplasia) in 2008.
In 2009, he established a partnership with the blood cancer charity Anthony Nolan and the Fire and Rescue service (FRS), which has helped recruit over 15,000 people onto the stem cell register. He shares his reflections on being part of CRUK’s Cancer Insights Panel, a few months into the role.
Why did you want to get involved with Cancer Research UK and on the Research & Strategy Cancer Insights Panel?
I was really lucky to spend my working life helping others and when cancer took that from me, I began looking for other ways to be able to do this. Initially this involved the Anthony Nolan and FRS partnership and supporting MDS UK (a support group for patients with myelodysplastic syndromes). More recently, I discovered Patient and Public Involvement. The more I read, the more that I felt I could add value like this while learning from and working with other like-minded people. The work of Cancer Research UK is hugely important for the future of all cancer patients, so to be able to support the charity in some way feels like giving something back to those that work so hard to reduce and eradicate cancer.
What’s being involved been like for you?
It really has been life changing and I feel very lucky to have been selected to join a truly incredible group of volunteers. My health is very up and down and has a very negative impact on my ability to find a meaningful way to keep a sense of purpose and my mind active. I look forward to the meetings and it’s a privilege to spend time in the company of such a welcoming and passionate group of people. There are also many opportunities to comment on documents or respond to surveys. This allows me to fit it in around my bad days. The support offered is incredibly personal and we get feedback on everything we comment on or contribute towards.
Now that you’ve been involved for a few months, why do you think it’s important for Cancer Research UK to involve people affected by cancer in their work?
Through my job, I saw enormous benefits from involving those affected by policies and procedures, in their design, construction and implementation. I always tried to consider the mantra ‘nothing about them without them’. To live with cancer or to see first-hand the devastating effect it can have gives us a unique perspective. It’s always a bit more work to do involvement but it’s absolutely worth it. It’s also very reassuring for patients that their voice has been considered. CRUK have really thought about this challenge and have taken huge strides to embed involvement ‘upstream’ and to make sure that all the various teams understand the benefits of it and the value that people affected by cancer can add to their thinking and future work.
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