You were appointed CEO of The Brain Tumour Charity in 2023. What led you there?
I always knew that I wanted to effect change, not just on an individual level but at scale. After working as a consultant focused on paediatric oncology and haematology, and in medical law for five years, this opportunity came up and I knew the impact I could have. It brings me back to what I have always loved—paediatric oncology—and provided me with an opportunity to influence positive change.
What needs to change?
Improvements in care in areas such as childhood leukaemia really expose the static nature of what is happening with brain tumours. It’s led to a kind of nihilism, a sense that it’s impossible to find treatments that will lead to cure in brain tumours. And yet, families can see all around them that other cancers are benefitting from innovation with new treatments coming online. That’s not okay. That’s what needs to change. It’s a challenge, for sure, but there’s something about the courage of the people that you look after that gives you the courage to meet that challenge.
What is it you can do leading a charity that you couldn’t do as a consultant?
It’s not one or the other. It’s about taking what I learnt clinically and using it in our work at the charity. My previous experience is part of our credibility as a charity. I have a deep knowledge and understanding of the space and can ask the right questions about how we can influence at a policy level. Then it’s about the charity. As the largest dedicated funder of brain tumour research, we can use that broad perspective to take decisions about what and where we fund for the greatest impact at a larger, more strategic level. That wasn’t possible in my previous role.
What are the objectives? What do you want to achieve?
Putting it bluntly, we want to see two things happen. First, we want an improvement in survival outcomes. At present, these are very poor, particularly in the higher-grade diseases. Brain tumours affect all age groups and are the biggest cancer killer in people under 40.
Second, we want an overall reduction in harm. Brain tumours are themselves harmful and the treatment is harmful, too, often impairing long-term quality of life even if it’s successful. The life you used to have is lost.
We want to see meaningful improvements in both those areas.
Has there been any progress in recent years?
There’s been some progress, but it is woeful compared with other cancers and we must examine why that is and directly address it. What we’ve seen is that when the tide rises for other cancers, it doesn’t bring brain tumours with it. That’s, in part, because of the exceptionality of brain tumours.
There’s something about the courage of the people that you look after that gives you the courage to meet that challenge
How do brain tumours differ from other cancers?
It’s about a number of factors in combination. Brain tumours are rare, often diagnosed late, not stageable and less survivable. While other cancers share some of those qualities, only brain tumours have all of them together, making them exceptional.
But as a result, generalised cancer initiatives usually don’t apply. For example, there is a national initiative to improve diagnostic times in all cancers with a target of 75 per cent of people being diagnosed at stage one or two. But because brain tumours are not stageable, they fall outside that measure and so get overlooked by any systems set up to meet it.
What could policymakers do to make the lives of the people you represent better?
There should be a dedicated national brain tumour strategy. This is not to say that brain tumours are more important than other rare cancers. Rather, that in addressing some of the systematic barriers to outcome improvement for brain tumours, policymakers will address some of the barriers that are common to a lot of other cancers.
We also need intentional leadership. Every year, 12,500 people from across every age group—including several hundred children—are diagnosed with a brain tumour. And, year-on-year, we’re not bringing anything different to the problem. That will only change if there is leadership to do so.
More broadly, we need to address investment. It is extraordinarily expensive to bring through new treatments from discovery to trials and beyond. Industry is not sufficiently incentivised to do that in the UK. This is to the disadvantage of all patients, who will continue to see trials opening elsewhere and see people benefitting from innovation elsewhere.
What do you expect the Rare Cancers Bill to deliver?
Firstly, accountability and leadership. There will be a named person responsible for progress, or to explain the lack of any progress. Secondly, it will connect patients to clinical trials, placing it at a policy level, so that improvements don’t remain largely dependent on the goodwill of individuals on the front line.
It offers a real opportunity to have someone drive forward initiatives that will benefit all rare cancers, including brain tumours, and help them see the progress we have seen elsewhere over the last decades. It represents real hope for our community, and we can’t let that slip by. There may not be a second chance.
