Hello everyone,
The campaigning team have had a couple of warm days at Westminster this week, but it has given us a chance to get into more granular detail surrounding the progress we need to make.
A key focus this week has been data – what we need to know and who holds it. Then how best to use it to assess the direction of travel – this is all part of implementing things like the National Cancer Plan and the Rare Cancers Act. Working with Government bodies will enable us to develop an agreed shared framework so we can speak with authority – now is not the time to speculate; we need to be robust and forensic.
Through the APPG on Less Survivable Cancers, we contributed to a discussion on one specific area of the Rare Cancers Act, which requires a comprehensive UK-wide review of "orphan drug" marketing authorisations, aiming to incentivise pharmaceutical investment and ensure patients can access innovative new treatments sooner.
Being at Westminster provides opportunities to talk with political stakeholders in both formal and informal ways. We were pleased to hear from Health Minister Sharon Hodgson at the LSCT APPG, for example, and just as importantly, to have those chance encounters with MPs, including those we engaged with at our recent drop-in event to keep our cause still fresh in their minds.
On Tuesday, we were delighted to catch up with former Minister Ashley Dalton, who was so admired whilst in post and who stepped back from her ministerial role to focus on her own health. She was, as ever, full of energy, and we spoke about the National Cancer Plan, devised, completed and launched during her tenure and is something she is both proud of and keen to see fully implemented.
What is so important with both the structured and chance meetings is that we have points we need to make and suggested actions for politicians to take to support our shared goals.
We all know more needs to be done, but what does this look like – what are the detailed asks?
Without specific, detailed asks, we risk receiving only warm words. We must continue to put forward practical, prescriptive solutions and ask clear, answerable questions that demand action.
There will be more news from Westminster in next week’s update.
Finally, this week some team news.
Katherine is leaving Brain Tumour Research and moving to a new role.
Many of you will have met her as she has travelled around the UK, setting up and chairing meetings in Scotland, Wales and Northern Ireland, as well as bringing her connections and expertise to our Westminster work. We are very grateful for all her hard work and wish her the very best of luck as she moves forward with her career.
We are delighted that the ‘new’ Katherine is already in post.
Welcome Sam Bromiley, our Policy and Public Affairs Manager.
Sam comes to us with a wealth of experience and an enthusiasm for the post that stems from a deeply personal connection to our cause. Sam’s aunt died in her mid-thirties shortly after being diagnosed with a glioblastoma.
Sam said: “It was the speed from diagnosis to death that shocked all of us in the family and the fact that she was so young. To now have this opportunity to influence change and devote my professional energy and expertise to lobbying political stakeholders up and down the country feels like the perfect fit for me. I am excited, motivated and looking forward to meeting many of our campaigners as I jump into the role Katherine has developed.”
Welcome to the team, Sam.
More from all of us next week. Wishing you all a peaceful week ahead.
Karen, Hugh, Sam, Jana and, for the last time, Katherine
