Last week, the Scottish Cross Party Group (CPG) on Cancer held its latest meeting. The session focused on the less survivable cancers (brain, lung, pancreatic, stomach, liver and oesophageal). We supported Theo Burrell, an Antiques Roadshow expert, in sharing her experience of being diagnosed with brain cancer. Theo’s story helped hammer home the urgent need for faster diagnosis of brain tumours in Scotland.
In this blog post, Theo shares why she was motivated to share her story with Members of the Scottish Parliament (MSPs) following being diagnosed with a glioblastoma last year.
What is the Scottish CPG on Cancer?
CPGs are groups formed so that MSPs from across the political spectrum can come together to tackle specific issues. MSPs can join the ones they are particularly interested in. The CPG on Cancer was created as a channel of communication between the Scottish Parliament, healthcare organisations and members of the public working in cancer research, treatment, care and prevention.
The CPG on Cancer helps MSPs understand the latest developments around cancer research, care, needs and services. It’s also a chance for them to learn about the barriers and problems encountered by patients, carers and healthcare professionals. This means MSPs are better equipped to tackle areas that require improvement.
As part of this meeting, Theo Burrell advocated for faster diagnosis of brain tumours.
Focusing on the less survivable cancers
The Less Survivable Cancers Taskforce, of which we’re a founding member, secured a speaking slot at this meeting. This was a chance to introduce the Taskforce to the CPG on Cancer and explain the objectives of the Taskforce and the reason for its formation. Data shows that the average five-year survival rate for the less survivable cancers is less than 20%. The Taskforce and member charities are working hard together to improve this.
It was also a chance for the Taskforce to update MSPs on plans for the less survivable cancers in the new Scottish Cancer Strategy. This maintains momentum for proposed actions that have the potential to improve outcomes for people affected by less survivable cancers.
Theo’s experience of advocating for faster diagnosis of brain tumours
We’re incredibly grateful to Theo Burrell for sharing her diagnosis experience with MSPs in attendance and over 60 other attendees who work in or have experience of cancer. Personal stories like Theo’s help bring the realities of a brain cancer diagnosis to life. And, they demonstrate the urgent need for faster diagnosis of brain tumours.
Theo shared that speaking at the CPG empowered her to “show from a very personal perspective why brain tumours need to be given more time, funding, attention and care by our MSPs”.
We know from our Improving Brain Tumour Care survey results that issues related to diagnosis are particularly common. The latest results indicated that shockingly for 1 in 10 respondents it took over a year to be diagnosed.
On this subject, Theo added “Having such a platform meant I could highlight some of the specific problems the brain tumour community is facing. Especially the issue of delayed or incorrect diagnosis. I detailed the stories of two people whose problematic diagnoses were fatal. This meant that people who cannot speak for themselves any longer were given a voice. And their devastating situations highlighted the desperate need for better education around brain cancer.”
“Unless you are directly affected, in some way, by a brain tumour, it is an area of cancer which people in general know very little. Not all cancers can be cured. Not all cancers have the same research funding behind them.
Theo Burrell
In speaking to the CPG, I was given the time to show just how significant these factors are for brain tumour patients. I feel extremely passionate about raising more awareness for the community. And I was very grateful to have been given such an opportunity.”
The importance of sharing your story
A massive thank you to Theo for sharing such a powerful, personal presentation on her diagnosis experience during the meeting. It’s always so impactful for members of the brain tumour community to share their stories at events like the CPG. Personal stories like Theo’s often resonate greatly with policymakers and encourage them to generate change.
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