Episode 66 - The Rare Cancers Act 2026

We're delighted to be joined by Dr Scott Arthur MP for this special episode. Dr Arthur put forward a Private Members' Bill for rare cancers and on Thursday 5th March 2026, it went onto the statute books - becoming the Rare Cancers Act. 

Listen in to find out more about what motivated a very new MP to get behind this particular cause; how 40 different organisations collaborated to make it a reality - though fate played a part; what happens next and how weekly runs and volunteering aide Scott's wellbeing.

You can read more about the background to the Rare Cancers Bill here. 

If you or someone you know needs a listening ear, you can contact our Support Team by calling 0808 800 0004, by using the web chat on our website or by emailing support@thebraintumourcharity.org

If you have any questions about this episode of the podcast, email podcast@thebraintumourcharity.org

Transcript

00:00 Jo: Welcome to the Brain Tumour Charity podcast. I'm Jo Porter, the podcast producer stepping in to make the most of our guest’s availability today. 

What if there was a world in which, at the touch of a button, using your NHS app, you could register your interest in a clinical trial? 

Scott: So what the bill is going to mean is once you've got a diagnosis for a rare cancer and it could be glioblastoma, that'll be on your medical records. And to access a trial, maybe for a glioblastoma, if one becomes available, all you'll have to do is go on the NHS app, press a button and that'll get you onto the trial. And I know there'll be people listening to this who have been faced with a situation…. they've been left for Googling, they've been on Facebook groups and they've maybe even sold their houses or run just giving out all the rest of it. But hopefully what this is going to mean is it's going to make it easier for people to access trials, and making it easier should mean more people can access trials and more trials are available in the UK. So let's hope that science fiction becomes reality. 

 00:01:07 Jo: Today we're meeting the powerhouse behind the Rare Cancers’ Bill, Dr Scott Arthur MP. We'll be talking about how the Bill came about, what Dr Arthur has learned along the way, and what the Act itself aims to achieve. So without further ado, let's cue the music. 

MUSIC

00:01:46 Jo: Thank you for your time today because today is Friday the 6th of March and yesterday the Rare Cancers Bill became the Rare Cancers Act and got Royal Assent. How does that feel? Was there a glass of champagne last night? 

00:02:02 Scott: We drank some wine that we got at Christmas time, that we hadn't got around to drinking yet, my wife and I, so that was good enough. When we found out I was actually in the University of Edinburgh at a research facility. We were waiting for Wes Streeting to finish an interview. And it was actually quite emotional. It's been an emotional couple of weeks actually, as we've got closer and closer. Yeah. So it's, it's amazing actually. And I keep on forgetting because I've never been an MP before. I'm only 18 months and there's a part of me thinks this is just normal, this is just what happens. But it's not. It's been amazing. So yeah, absolutely incredible. 

00:02:34 Jo: Yeah, I wanted to start there because I think you became an MP, having been a councillor in Edinburgh. I think you became an MP in May 24. 

00:02:44 Scott: July. 

00:02:45 Jo: July So then to get the opportunity to put forward a private members bill must have felt like winning the lottery. How did you go about that? You've talked about this before, but how did you go about deciding what to put forward? 

00:03:01 Scott: I mean, it literally was a lottery in that you sign up and your ball is pulled out of a goldfish bowl. And you know, I was number six with top seven. You're guaranteed five hours of debate in the main chamber for your second reading. And you know, and it was really difficult to come up with an idea and, and you won't be surprised to hear you're pestered by lots of people who have those ideas. But then one of the campaign group around a fantastic MP called Siobhan McDonough MP, but he'll be away and well known to a lot of people listening to this, one of those campaigners got in touch talking about how I think it was her father had been lost to glioblastoma. And I recognised the cancer type as perhaps being the one we lost her father-in-law to, my wife's father too and so on, and got back home, asked her. And it felt like after a week of indecision from me, it felt like the stars had aligned and it felt like it was the right thing to do. And I really do think it has been. And of course, the bill started off as being the, the, the glioblastoma bill, then it was going to be the brain tumour bill. But it's widened out to be rare cancers. And that was it. Someone else's advice, the clerks in the House of Commons, because they were worried that if the avenue around glioblastoma closed off, I would have nothing. So they said make it a bit broader and give yourself some flexibility. And I think that's been the best thing we've done, is one of these examples of how fate proves to be just so influential because that's enabled us to build this huge coalition of people and charities and campaigners to get us across the line. So that's been, it's been amazing actually. 

00:04:42 Jo: Yeah, it has been a massive collaboration, hasn't it, which you know, when you watch Prime Minister's Questions and things in the Commons, you think it's quite adversarial. But this has been a really collaborative event with cross party support. Did you anticipate that's what it would be like? 

00:05:00 Scott: Yeah. So you like to think that if you're talking about improving outcomes for brain tumours and other rare cancers people will be broadly supportive. But politics is a funny thing. And I have to say that sometimes when the House of Commons for the private members bills, which were tabled alongside mine, I'd be really excited about thinking about voting for one, only to find out that there's not the support there for it. And often, not always, often it's maybe because the, the people around that Bill haven't been doing outreach work to get it across the line. And, and to be perfectly frank, I mean, some MPs enter the private members bill process knowing that their Bill's not going to succeed, kind of reaching for the moon or reaching for the stars. But what they want to do is raise the profile of a campaign. But we always, I always took the view and we always took the view in my office here that it was better to come away with something than come away with nothing, you know, and even if it was relatively modest, at least we could say we'd made a difference. And, and I think we've done that. Well, time will tell, but I think and hope and pray that we've done that. 

00:06:03 Jo: Absolutely. I think in the brain tumour community you've become a bit of a rock star. So again, it's another reason why it's a, a privilege to speak to you today. And you mentioned that you took advice on what to call the bill and what its remit should be. How much of a learning curve has this been for you? You're a civil engineer by trade. You've had to become an expert in rare cancers and in parliamentary processes as well, I guess. 

00:06:31 Scott: Yeah, well, firstly, right at the start I became overwhelmed to try to figure out because you meet people and you talk about some amazing research they're doing and how things like glioblastoma work and it's just so overwhelming. So early on I made my mind up not to be an expert in the clinical side of things and just focus on working with people who wear and trusting them to build that coalition. Yes, so absolutely. But what was almost funny was that once we got past the second reading in the House of Commons, all the fantastic campaigners who'd be giving us so much advice, we turned to them and said, well, what happens next? And they said we don't know. We've never got this far before. And then, of course, once we move from the Commons to the Lords, the Lords has just operate, although mean from outside Parliament it may just look like a different Chamber for debating in the same place. Oh my goodness is so different. Procedures are even more complicated and I was going to say arcane, but I'd say full of tradition then compared to the House of Commons. 

And I think early on and my stand on some people's toes in the House of Lords. And I had to eat a bit of humble pie and and just really trust the fantastic Baroness who had there to represent the whole campaign. And she did a fantastic job. Julie Elliott, fantastic job. And really the government weapon, the Lords as well, was really helpful. I think he lost someone close to him to glioblastoma as well. And he was, you know, hopefully not being indiscreet and saying that. And although, I mean, he was speaking our personal capacity, you know, I think he was quite supportive for the bill too. So it's been really good actually. 

00:08:10 Jo: Amazing. And I think from our point of view at the Brain Tumour Charity, our charity name has been mentioned in Parliament more times in the last 12 months than it has in the last 12 years because of our participation in this. In fact, this year we’re marking 30 years of our existence. So it's fantastic to have a positive, such a positive thing to to celebrate. And one of the reasons that we were mentioned as well is because people did share their personal stories, whether it was a glioblastoma diagnosis or, or others. Could you tell me a bit about your father-in-law or about some of the other personal stories and circumstances that you heard which kind of fired you up to get behind this? 

00:08:55 Scott: So my father-in-law, you know, you're really good. I'm getting emotional just thinking about it actually. But he was a really a really good grandfather to our kids, you know, really good, very humble guy. But he took been a granddad really seriously. You know, he was a former technical teacher. So he used to hand make toys for my kids. He was good at making things. OK, My son liked the Chinook helicopters for a bit when he was preschool and he made him a Chinook helicopter Piggy Bank, which my son still has and when my kids were doing… 

This is perhaps something I shouldn't talk about. When my daughter was doing, they were doing a Native American history at school and he made her quite a fantastic wooden tomahawk and then a little mini one from a son because he was slightly younger. I'm not, but in retrospect I'm not sure taking a wooden tomahawk to school was the best thing. But it was perfectly safe. So he was great. He was a very dignified man, well respected, fit well into. He's played hockey into his 60s, I think I remember rightly. And then he started to develop a speech impairment. My wife's worked in healthcare or life and so she thought it was perhaps the start of dementia. So we went to doctors. He got scan hospital and they found out it was glioblastoma and I think he was told quite quickly that there was not much that could be done. And so he died within around I think around five months later he died. But because he was a fit man, what my wife and her family went through was awful actually because it once he stopped eating and drinking, I think because of his physical fitness, it did take some time for eventually for him for his body to give up. So it's quite a difficult time actually. 

And, you know, and it's been great to be able to talk about that and talk to other people who have been through similar experiences and hopefully for something possible positive to come out with that actually. So, yeah, I mean, and there's so many people even today when I was reading my comments on my Facebook page, because I've talked about yesterday about how we got the royal assent and there's so many people, people I don't know, talking about how they've lost some someone, there's someone messaged me last night talking about everything His dad had got a diagnosis for glioblastoma and it just wanted to know what the bill was going to do. I mean, the likely who does that the bill is isn't going to be able to save his dad because you know what, the prognosis for glioblastoma is just so bad. But I think so many people who have supported this campaign know that who else that might not help them. Hopefully for people in a few years time it will help them. And that was what was great yesterday, meeting some of the researchers. I've got a medic in my constituency called Faye Robertson. She's involved in a trial here in Edinburgh. She's managed to win just over £70 million I think it is to develop. I think it's stage 2 and she's fantastic. And I was speaking to somebody else yesterday has glioblastoma, and she's part of the wider campaign around this trial, trying to support it as much as possible and give it some publicity. And it's great to see, you know, people who are facing that awful diagnosis, just investing so much in the community. And, and you know as well that some of the fantastic campaigners that we have for the charity, the work they're doing all the time, both to raise money and raise awareness. And a lot of these people have connected to the charity, just like myself, through the worst possible circumstances. But isn't it great that they are making the case every day for more progress in this area? And it's always inspirational. And I think charities right across the field are really blessed with fantastic patrons and activists and advocates, I mean, who've come to us through the worst circumstances. 

00:12:27 Jo: Yeah, I know we're incredibly grateful to everybody who shares what they're going through and it often comes from a place of desperation, you know, very private people who feel that they've got to talk publicly about the worst thing that's happened to them. 

And I think you're right, we've got to get to the stage where there are options for people with brain tumours. It's absolutely tragic to hear their family say, you know, where is the clinical trial to be? You know, we've got new treatments for all sorts of, of conditions now and that makes me think again about the term rare cancers. You know, we one of the other brain tumour organisations I think did a survey a couple of years ago and found that one in two people knew somebody affected by a brain tumour. It doesn't feel like a rare disease. Can we dig into what the nitty gritty of of the ACT is? My understanding is there are three main aspects to it, one around providing incentives for people to develop those more effective kinder treatments. So so should we start there? 

00:13:39 Scott: If you don't mind, I'll start somewhere else if you don't mind because it's a really good way of talking practically about what the bill should do. And this sounds like absolute science fiction, but the government put it in a press release, so it must be true! So, so we know that people with diagnoses are desperate to get on a trial and we know that often people who are running trials are desperate of the right patients. So what the Bill is going to mean is once you've got a diagnosis for a rare cancer and it could be glioblastoma, that will be on your medical records and to access a trial for glioblastoma, if becomes available. All you'll have to do is on the on the NHS app, press a button and now I'll get you onto the trial. And I know there'll be people listening to this who have been faced with a situation, they've been left Googling, they've been on Facebook groups, and they've maybe even sold their houses or run just giving out all the rest of it. But hopefully what this is going to mean is it's going to make it easier for people to access trials. And making it easier should be more people, more trials are available in the UK, more people will come here to run them. So let's hope that science fiction becomes reality. But of course, we need trials to run in the UK for that button to be available for people to press. And that's really important. There's a big feeling that, you know, the, the government does spend a lot of money on rare cancers, but it needs to spend more. Of course, we can all agree on that, I'm sure. But there's a feeling that even the the money it's spending just now, perhaps it could be better directed. So we're going to put the bill demands that the government puts a national lead in place, put together a strategy so to make sure that money's spent in the most effective way. So as the biggest impact, and what I'm really keen is that the charity I we're on with rhetorical sector does have a say in who that person is. 

00:15:30 Scott: I don't envy that person because I think there's going to be quite a lot of people knocking at their door demanding action. But let's hope we do get the right person, someone who's outward facing, speaking to the sector and speaking to patient groups, etcetera, about where the real desire is for change and also looking at the research to see where the low hanging fruit is. So that's the national lead. And then the last part is that we know right across the world there's lots happening in terms of incentivisation for pharmaceutical companies and researchers, etcetera, to invest in this area. So what we're asking the Government to do is to do a review of things that are happening right across the world to see what other countries are doing. We know that in the States there's tax incentives to work in this area, for example. Look at what the best of those approaches are and then shape something for the UK. And what I'm really unashamed about is bringing more of this work to the UK by doing that benchmarking, doing that and establishing best practice. It's great for patients here because it means they'll access the latest treatments and the conditions will be really close and monitored. 

But it's also great for our economy because we'll bring that investment to the UK. We'll bring researchers hopefully from right around the world to settle in the UK and hopefully we can start making a difference to people, both in terms of the experience to get hospitals but also the availability of those trials. 

00:16:48 Jo: Fantastic. That's a much better way of through and and yeah, I think, I think there is so much that new technology can do to make it simpler to find a clinical trial. It's something that we are actively involved in as well. We are funding the setup of ACT-BTA a clinical trials panel of experts who will be able to take referrals from consultants and use their knowledge to refer people to a trial that they might be eligible for. We hope not only will it speed up people getting access to clinical trials and also mean they don't have to do all that endless Googling to try to find something, but also will gather data to establish what demand there is for clinical trials that don't yet exist into a particular condition. So hopefully those two things can run in parallel and obviously we're funding a tonne of research as well. The Brain Tumour Charity is committed nearly £60 million over the last 10 years to research projects and the one on the top of my head that's in your constituency in Edinburgh is Neil Carragher's project where he's analysing vast quantities of existing drugs to see if any of them are effective in killing off glioblastoma cells. So.... 

00:18:15 Scott: So I've been up to see him actually, in the labs actually. I wish I understood half of it. It's incredible what they're doing actually. So I went up, we've seen their labs and then a couple of weeks ago, because they used there's a supercomputer in Edinburgh, which is just about to get updated by the government at huge cost. And when I've even went up to see the supercomputer, it's absolutely incredible how we're marrying together, you know, the latest stuff that's happening in the laboratory with, you know, the real, like, serious computing power. 

Because the data that he's collecting is so huge because the number of samples he's analysing, the ability of the robotic microscope just to cycle through those different samples. It's, you know, a lifetime’s work is done just over a weekend now. So it's amazing seeing all these things come together. So and I’ve been guilty over the last year or so of saying, you know, it's terrible for people who've been tumours because the prognosis is so bad.

There's been so little progress. And that's true. But there's so much happening as well. There's so much happening in labs and all it just needs is just a little push. And so let's hope the Bill does that. And I think, and even if the bill would get is 10 times better than expected, expect and hope it to be, there still will be a lot of work to do. But I hope what the bill does is it means that people are donating to the charity and to others. It means that money is going to go further and get us closer and closer to the cures that we need. Yeah. 

00:19:38 Jo: Absolutely. What is next then? You've had the celebration. But practically, what can we as a as a charity and as a a community of people affected by brain tumours, what can we do to help now that this is on the statute books? 

00:19:52 Scott: So this is something we've been thinking about and we have, we've met with being to my charity actually to talk about this. Hopefully the Bill passing is just the start and people have their hopes up. We've built this huge coalition of people, you know, over 40 char eggs working in the sector. So many people who have either got area of cancer or have lost ones or survivors, they're part of it as well. So I think we’ve got a duty just to keep pressure on the government to deliver this as quickly as possible. It’s already in the Cancer Plan. There's a rough timeline there. Hopefully that's just a start. And one of the things that people keep on talking about is the reviewer talked about best practise around the world for how we incentive advice trials to come to the UK. That has to report back no later than three years from now. So every day earlier we get that means that we could start bringing more trials to the UK. So that's, that's something that we can maybe ask the government to go move faster. 

Of course, if they, if they want to spend three years and do an absolutely fantastic review, you know it, which is worth waiting for. I'll be the first to be waiting three years for it. But if we can do it quicker, quicker, let's do it quicker. And even for appointing that national lead, you know, let's, let's make sure we get the right person, hopefully get some input from the sector and start working together to, to really make a difference. 

00:21:16 Jo: Yeah. So for that, that leadership position, do you hope to have someone in place within six months or so, or sooner than that? 

00:21:25 Scott: So there's, there's of course, as with all these things if you've ever worked in a workplace and you're going to appoint somewhere all sorts of rumours start. 

So there's, there's all sorts of things swirling around just now. But the government has committed to get having that person in place this year, which is great from our perspective, because before the cancer plan came along, we thought as soon as the bill passes, effort was going to pass that they would stuff to start lobbying on that timeline. But the government's already published the timeline for these things happening. So that's great. But so would now we can start focusing on who does it rather than when it happens. So we'll get there one step at a time. We'll have to continue to work together about on this to really focus on the delivery of the bill and also how it interacts with the National Cancer Plan as well to start making a difference. 

I mean, I think something that one of the charities said was the reason that they've got a rare cancers chapter in the National Cancer Plan is because of all the talking there's been around this campaign. The fact is, so many charities that were involved, the fact that we've had hours of debate in Parliament, even two hours of debate in the House of Lords, it's created a real mood of expectation around this. And that's why we've got that chapter in the National Cancer Plan. 

And also there's a separate chapter on cancers for young people, which all of them are rare cancers as well. So I, I feel like it's a double win. Having both a rare cancers chapter and a chapter for children and young people is, is just fantastic. And it's not just words it, there's real actions there. And for the large part, there's timelines and there's also targets. But I think right across the sector, I think we have got just to make sure the government delivers those targets and perhaps even exceeds them.

00:23:07 Jo: That would be amazing. And, and then talking of timelines and things, maybe we need to get a date in your diary to come on this podcast again in a year's time to do a little progress check and, and see how things are going. But what a legacy, what a tribute to your father-in-law, and also how brilliant to bring charities to together to to all work towards the same goal. 

00:23:31 Scott: It's been amazing actually. I mean, early on I think people did whisper to me say no, there's too much competition between charities and of course, to certain extent you might be trying to compete for funds from the same people, etcetera. But it's just, it's just not what I've seen at all. Actually the people, I mean, obviously Brain Tumour Research, The Brain Tumour Charity, Pancreatic Cancer UK and Cancer 52 have been right at the hub of what we've been doing right from the start. We've been helped by our public affairs company as well called H advisor Cicero, but that group has been right at the hub. My office staff still meet them weekly, talk about what's happening and it's really been a real collaborative effort actually. And so that's been amazing that we can come together on this. And, and this is what I was saying and this is just just us to be the start. 

We have to maintain this relationship and make sure we get every last bit of benefit out of that, that we can and hopefully it'll start making a difference. So many of the cancers, you know, particularly brain tumours, there's just been not enough progress and there must be so much low hanging fruit that just that needs a little bit of work and perhaps we could start to make a real difference in terms of getting things across the line. 

And you know, when I was with Wes in Edinburgh yesterday looking around the lab. I mean, that's the kind of things he was saying. And he really wants things to move faster. He gets that it's taking longer for trials to get up and running. That point was put to him by one of the clinicians in straightaway says, yeah, we know this and and we are trying to fix it. So again, an example, there's a commitment there. So let's see what progress we can make against that. 

00:25:03 Jo: I think, you know, on that collaboration thing, many of us in this sector do different things for people. So some organisations offer support, some fund research, and we're trying to to cover research, campaigning and support because depending on the stage that you're at with an illness, you might need any or all of those things. But a huge shout out to the public affairs company you mentioned as well, because they've won awards helping to, to push this through. And on a much lighter note, you know, we rely on people to, to fundraise, to help us to commit money to, to research. I gather that you're a bit of a fan of Parkrun. There's a, a nine year old lad called Oliver. He is trying to run the equivalent of nine marathons between now and April when it'll be the London Marathon, who ran Parkrun with two MP colleagues of yours last weekend to raise money for us because his dad's been affected by a brain tumour diagnosis and has been having some support from us. So I just wondered if you'd give a shout out to Oliver Smith, who is doing that amazing challenge and it's halfway through now. 

00:26:20 Scott: Yeah, so good luck to Oliver. Actually, that sounds amazing. You know, a huge fan of parkrun and actually he's been so good for my well-being. You know, just, I mean, I had heart surgery 10 years ago and they helped me recover. And I know for so many people, and it sounds like including all of our, it gives you a sense of community, a sense of being part of something bigger. And it's great that he's actually using it to make money and also raise the profile of the charity. And also I'm sure his dad is really, really proud of him as well. So that sounds fantastic. I also have to say my daughter - I wouldn't be forgiven for not mentioning this – she’s run quite a few marathons now, including for the Brain Tumour Charity. Sometimes I wish she would stop doing it because it's costing us too much money because we have to sponsor her all the time! But again, I mean, she's, we're really proud of her as well. But she's a bit older than Oliver. So, well, I think Oliver probably slightly eclipses her so well done to Oliver. 

00:27:13 Jo: Ah, no, well done to her as well. That's, that's fantastic. And please pass on our appreciation for that fundraising she's doing. And talking of being nine or 10 years old. My last question to you is what would 10 year old Scott have thought about what what you're doing now? Did you ever think, you know, when you were considering what you wanted to do for a job and in life, that you might be sort of at the helm of, of steering something like this through Parliament? 

 00:27:43 Scott: Such a good question. I mean, firstly, I'd love to be 10 again. 

Jo: Me too! 

00:27:48 Scott: So I used to be a university professor and I used to get in trouble from the careers people for saying that after they would speak to the the students about they need to plan their career. I used to see them quite cheekily say that ambition only is the disappointment that fate is really, really powerful. And, you know, of course, I didn't mean that, but it's about you've been able to. Yeah, it's great to be ambitious what you want to do if you're 10 or if you're 50 or whatever, but also keeping an eye out for opportunities as they come along. And it's been opportunity. Somebody call it like a guess that's got me this far. I mean, I never, ever expected to be an MP. I’m in my office just now, my MP's office, my constituency, never expected to win it. And my wife, when I did win it, she was quite unhappy with the situation. I assure you because I promised, almost promised her that we wouldn't win. We're 25% behind. 

But you know, here we are 18 months or so later and we've done this amazing thing, something that I mean, MPs who have been mean, Siobhan McDonough, who's been an MP for a long time, she's never even been drawn in the ballot, let alone have the chance to bring forward other piece of legislation. And so it's been luck, I guess I should call it, but also being able to work with some absolutely amazing people who are absolutely committed to making a difference, charities but also individual campaigners. So yeah, it's been amazing, it's been amazing. No regrets. Brilliant. 

00:29:17 Jo: And it's a really tough job, isn't it? Long hours, lots of travel, complicated issues to get your head around. So you you use Park run I guess to decompress. 

00:29:26 Scott: Yes, parkrun 416 for me tomorrow and then on Sunday I volunteer at the Junior Park run in Western Hills, which I'm really looking forward to both of them actually. Both running and volunteering are a real boost to me actually. And my staff know that, you know, I do stuff all round the clock. I'm going to an Iranian film showing tonight, but they know never to put anything in my diary that nudges on Parkrun either on the Saturday or the Sunday morning. So it's about it's all the time I have to myself actually, although I do do it with my son the Saturday morning. 

00:29:59 Jo: Well, enjoy your 400 and something run tomorrow. You put me to shame. I think I'm up to about 85. Thank you very much for your time today. We'll put a date in the diary to catch up with you again in a year or so. And meanwhile, thank you to everybody who's been listening. Please like, share and subscribe to spread the word about the Let's Talk About Brain Tumours podcast. And if you'd like to feature on the podcast or have any comments, please e-mail the team at podcast@thebraintumourcharity.org. 

Thank you and goodbye.