Episode 60 - Less Survivable Cancers Awareness Week

A warm welcome to Let's Talk About Brain Tumours!

After a break since the summer, we're back to bring you interesting and informative conversations with members of the brain tumour community and at The Brain Tumour Charity.

A new production team is now at the helm, so bear with us while we learn the ropes of podcast production. But we're delighted that our volunteer co-hosts remain unchanged: Anna Blyszko, Chandos Green and Andy Tudor.

"On the cusp of change...!" today, Anna and Chandos quiz Anna Jewell and Cameron Miller about how the Less Survivable Cancers Taskforce was set up, what it's achieved and what its latest campaign is about. Then, Andy meets Frankie Davies whose mum Sue's story throws that campaign into sharp relief.

Many thanks to all our guests for taking part in this recording.

Further information

• Frankie mentions online support groups and you can find out about these here 
• To find out more about the campaign go here or search the hashtags #LessSurvivableCancersAwarenessWeek #CloseTheDeadlyCancerGap on social media
• If you have any questions about this episode or want to find out more about this podcast, you can email the team at: podcast@thebraintumourcharity.org 

Producer: Jo Porter
Audio editor: Elliot Broad

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If you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

Transcript

Anna B: So, welcome back to the 'Let's Talk about Brain Tumours' podcast, and a happy new year. As a little bit of a reminder, as you might not have heard our voices in a while, we're your hosts. I'm Anna Blyszko, and I was in the previous cohort of young ambassadors at The Brain Tumour Charity.
Chandos: And I'm Chandos Green, and I was one of the first young ambassadors, and I'm now a volunteer for the charity.
Anna B: Yes, so on today's episode, we'll be introducing you to some very special guests. One is another Anna, Anna Jewell, who's the Chair of the Less Survivable Cancers Task Force, and Cameron Miller, who's the Director of External Affairs and Strategy at The Brain Tumour Charity. Welcome to both of you. It's a pleasure to have you here.
Anna J: It's a please to be here. Thanks for inviting me on
Cameron: Looking forward to it.
Chandos: Before we find out about the task force, we thought we'd break the ice with a bit of a discussion around New Year's resolutions as it's January. Cameron, a little birdie, told me you enjoy running. Have you made any new year's resolutions?
Cameron: Yeah. So last year, I challenged myself to run 1000 kilometres throughout the year, and I raised money for The Brain Tumour Charity, in order to do that. So yeah, and I did manage to achieve that. I am thinking about possibly doing, trying to do, a triathlon. So that might be my new year's resolution this year, but we'll see. We'll see if I'm brave enough for that. I'm not quite sure I'm there yet.
Anna B: That's amazing. One of my friends ran the London Marathon this year for the brain tumour charity, and it's great, just those kind of events, especially when people are doing it for such an important cause. How about you, Anna, any new year's resolutions?
Anna J: I think my main thing actually, is to try and do a bit more kind of meditation, mindfulness. I think it's about bringing calmness into my life. So, yeah, probably the opposite to Cameron. I mean, I do like a bit of running as well, but, um, yes, I'm trying to focus more on that this year and that's it.
Chandos: I think for me, I'm going to try and join the gym. And here's hoping that as many people as possible make it their New Year's resolution to listen to this podcast. We've got lots of interesting conversations coming up this year.
Anna B: Yes, so let's kick off with today's topic. Can I start by asking you, Anna, what do we mean when we talk about less survivable cancers?
Anna J: We're talking about the six cancers that have an average five year survival rate of less than 20% so these are lung, liver, brain, oesophageal, pancreatic and stomach cancers. And unfortunately, over 69,000 people die from one of these less survivable cancers in the UK each year. And yes, so we're very clear. That's what we mean by the less survivable cancers.
Chandos: So Cameron, what led to the task force being created?
Cameron: It was actually Pancreatic Cancer UK, who sort of came up with the idea. Someone working there had seen something, a piece of legislation passed in America called the Recalcitrant Cancers Research Act, I believe is its name, which essentially requires the Director of the NIH (National Institute of Health) to have an action plan for recalcitrant cancers, which essentially are less survivable cancers, difficult to treat cancers.
They had this idea of, I wonder if we came together as a group of charities who all represented the groups of what would be recalcitrant cancers - less survivable cancers... If we came together, if we can have a stronger voice to try and get a similar piece of legislation passed, and so had a conversation with us. We were very much on board with this, you know, and brought other charities into the group and so we formed this task force, and it's sort of grown from there. Our work has expanded and, you know, and really grown and been much more, I think, influential than perhaps we initially even thought. It was a bit of an experiment to see if we could be greater than the sum of our parts. And I think we've absolutely demonstrated that.
Anna B: Thank you. And I think it sounds like it's much needed. Anna, what does the Awareness Week aim to achieve?
Anna J: We're very keen to raise awareness of the lack of progress that's happened for the less survival cancers. We've seen very little progress in, probably the last 40 years, in terms of really improving survival quality of life for these cancer types. And you know, we very much, I guess, when we came together, wanted to call for the levelling up of these cancers, and to call for doubling the survivability rate from about 14 to 28% by 2029.
And I think you know Less Survival Cancers Awareness Week aims to really shine a light on these cancers. And part of our work calls on government to prioritise action for the less survival cancers and also to call on the health services as well, to do more to improve outcomes and experiences for everyone with one of these cancer types. So in particular, we're calling for improvements around early diagnosis, better treatment and care pathways for everyone with a less survivable cancer. More investment in research and action to understand and improve people's quality of life.
Anna B: Yeah, that sounds super, super important. We've talked a bit about why it was created and what you guys want to achieve with it. Can you give us a bit of an update on how it's been going, or what wins the task force has already celebrated?
Cameron: One of the things I think that it has achieved is genuine credibility in the space, and it's sometimes hard to get that because people want to listen to patient organisations, but there are a lot of patient organisations out there. Government have a limited amount of money, they have a limited amount of time, and so getting cut through is really difficult. But during the cancer inquiry that the health select committee did in the last parliament, actually they invited three organisations to go there. And actually Anna attended, on behalf of the less survivable cancers Task Force. And I think that that's a real sign and show of the credibility that we now have in that space, that we're being invited to the table as a task force to represent those cancers.
Even now, the government has announced the dedicated cancer plan that's going to come out of previous consultations, as well as the 10 year NHS plan and health plan that they're developing. And we're having meetings with senior civil servants as a task force, and it's clear that they are interested in what Anna was talking about previously, which is the unmet need of these cancers. The fact that they don't have, you know, an improvement in survival rate for so long, and that they can clearly see that that's where the big gains can be had. So I think, to be honest, I think that credibility piece is where we've had the most success in just getting ourselves recognised, and getting ourselves invited to that sort of top table, almost.
Anna B: Yeah, absolutely.
Anna J: As well. Yeah. I mean, definitely that credibility and getting the seat at the top table, which is definitely something we wanted to see with key policy makers, I think in Scotland as well. I'd say we do have sort of sub groups of our task force like work in Scotland and Wales and in Scotland, I think we're really pleased to see that the Scottish Government, when they put together their cancer action plan, did include a particular focus on the less survival cancers. And again, you know, that's the first time we've seen that, I guess, in a national cancer plan. So that felt like a really successful moment. We're now working hard, I guess, to regularly meet with, well next year we're meeting with the cabinet health secretary to kind of push to make sure that action is continued to be taken forward in Scotland, to meet those aims that were in the Cancer Action Plan. You know, we need to keep pushing for that implementation. But that was something else that we're really proud of and really delighted to see. And I guess, you know, coming back to the awareness week as well, this will be our third, well, first Awareness Week, third Awareness Day. It's been so successful, it's moving from a day to a week this year, and it's been really fantastic to see the kind of coverage and impact that we've had through the Awareness Day. Last year we got, I think, 124 million pieces of media coverage. And yeah, the awareness aims to raise awareness of the signs and symptoms of the less survival cancers. And I think we were very successful in doing that as well.
Anna B: Yeah, sounds super important. Well, it sounds like you guys are making great headway. And it's nice, isn't it, to kind of be asked those questions sometimes and reflect a little bit so you guys can be reminded of the good work that you've been doing. Just taking it back to the parliamentary work that you guys discussed, we know you set up an all party parliamentary group. Can either of you talk us through a little bit more about that? So what kind of powers does that have?
Anna J: Yeah, so it's really exciting, I guess, to have reached a stage we're coming together now to form this all party parliamentary group, it's a bit of a tongue twister, and I think, you know, what we found before, you know, working with these groups is they do have the power actually to sort of hold inquiries and things like that, where they can actually, you know, invite people in to give evidence to the all party parliamentary group. And. I think it's also really impactful in terms of the profile it can give within parliament. being there and willing to push forward the issues we're trying to raise.
Cameron: I think it's important to note that all party parliamentary groups are made up of back bench MPs. I used to work for a back bench MP, and one of the things he sort of taught me when I this was one of my first jobs out of uni, was that he had very little power but he had, basically, the world's loudest megaphone
to really highlight those issues. And as we know, when issues get highlighted more and more, it helps to draw attention to them, and it starts to get people thinking about solutions. So I think it's important to note that, you know, the APPG may not have any sort of statutory ability to change legislation in and of itself, but it's made up of a group of people who are sitting in Parliament who are determined to see change in this area, and will use that and avail themselves of that megaphone that my old boss was talking about, to try and see that change happen. So I always think that's really important to bear that in mind, that that's sort of a good outcome for it to really highlight those issues.
Chandos: And I know that people who'll be listening will be wanting to help contribute to the change, and want to be part of that movement. I know I am just listening to you guys speak about it. So what's the main message for this year, and how can our listeners get involved?
Anna J: The main theme for the less survival Cancer Awareness Week 2025, will be highlighting the very poor, widening survival rates of people with a less survival cancer, and we'll be, I guess, going back out with our calls for government in terms of trying to get them to develop and implement National Action Plan, action plans to improve survival for the less survival cancers. I think it's a really important year this year, because actually, we know we've got, the government is going to be publishing an NHS health plan, and then also have talked about publishing a new cancer plan. And I guess you know, because we've got awareness week in January, this was a really key opportunity, actually, while those plans are being consulted on to make a noise about less survivable cancers and to talk about what needs to change. So I guess you know, it'd be great to have as many people as possible contributing by helping to share awareness on that day of the issues for less survival, cancers on their social media, get talking about it, writing to their local MPs, just to show, I guess it's coming back to Cameron's megaphone points, I think, in a sense, you know, we want to try and make as much noise as possible around that time, so that, I guess government and people writing these new policies can see how important it is that they take action on behalf of these cancers. part of that movement, so what's the main message for this year and how can our listeners get involved?
Cameron: I agree with everything Anna said. I think when the APPG sort of gets started, it does look to do sort of inquiries. And we sort of got some ideas as to what that can look like already. The patient voice will be an essential part of those inquiries, you know. You know, we will bring in health experts, we'll bring in researchers, we'll bring in policy experts, maybe people from other countries who have implemented similar changes or looked at different ways of working. But fundamentally, we'd also always come back to, what is the patient experience? What are the patients telling us needs to change in order to make a difference to their life? So that will be an important part of any work that the APPG does moving forwards.
Chandos: Well, in a moment, we'll be hearing from Frankie Davies, who'll be telling her story to highlight exactly that. Frankie's mum died six months after her brain tumour diagnosis, aged just 54. But first, is there anything that either of you would like to add?
Anna J: I think, yeah, just from my perspective, as chair of the less survival cancers Task Force, I think, you know, building on what Cameron said, I think it's just so the power of the task force has been, you know, so good because we've brought together the charities that represent and work with, you know, people affected by these less survivable cancers. We have worked with health professionals as well, coming together and stakeholders. But because also we have worked directly with people affected by these cancer types, who've been so willing to share their experiences, share their voice, talk about why these issues matter to them. And it's that powerful combination, I guess, that really allows us to make as much noise as possible. So yeah, I think I just wanted to sort of echo Cameron's point about how important that is the work that we do.
Anna B: Yeah, it sounds absolutely imperative. I know you guys mentioned that people who are listening can get in touch, and that there's ways for them to get involved during the week. Is there an email address for the less survival cancers task force that they could reach out to if they wanted to get involved?
Anna J: Really, we encourage people actually, to engage with the charity that they are most affiliated with or most connected with, to ask how they can get involved. And you know the, I guess Cameron can tell you who that is for the brain tumour charity, but yeah, I think that's the most important thing, because you can get the most support then actually, by contacting the charity that you work directly with.
Cameron: Absolutely. The only thing I would add, actually, just to jump in as well, is that it does feel like we are genuinely on the cusp of change. I feel like we have got that recognition now. I feel like people are listening to the less survival cancers and the need for change in that area. So I really do feel like over the next year or two, we will see a step change in how less survival cancers are approached, particularly around things like government funding into research and things like that, as well as clinical practice. So I'm really hopeful of things like that, and I feel like we're on the cusp of change. So fingers crossed I'm right.
Anna B: I think it sounds absolutely amazing what you guys are doing, and I have every faith that is going to make a difference as well. Everything makes a difference, no matter how small. And what you guys are doing is not small at all. So you should be super proud of yourselves. And thank you so much for talking to us today.
Chandos: So let's hear from Frankie Davies now, who spoke to our co host Andy Tudor about her beloved mum Sue.
Andy: Hi Frankie, and welcome to the let's talk about brain tumours podcast.
I'm sorry it's to talk about such a difficult subject, which must be tough for you. But thank you very much for coming on.
Frankie: Thanks for having me. Happy to be here.
Andy: And do you want to start talking telling us a little bit about your mum. What was she like?
Frankie: Sure. Yeah. So my mum was called Sue. I think she passed away when she was 54. She was a really sort of happy person for most of the time, and she had a bit of a turbulent life. So she was adopted, and then she went on to have nine children. Um, a really, you know, caring mum and doted on her children that was her main priority, yeah, just all in all, a really amazing person, but probably didn't have a lot of confidence in herself and didn't believe what everybody else you know thought about her.
Andy: yeah, she sounds like a remarkable lady. So were you the youngest or the oldest child?
Frankie: So I'm the third eldest and the eldest daughter.
Andy: So did you have to take on any of her sort of care or look after her at all when she started to get ill?
Frankie: Yeah. So I actually was the main sort of caregiver, so I became her next of kin. So I dealt with, you know, all of the interactions with doctors, the hospice, when she went into hospice care, yeah, finances, all that sort of thing.
Andy: So you kind of had to grow up fast doing that.
Frankie: Oh, gosh, yeah. I mean, I think I was, I'm 31 now so I think I would have been about 26 at the time, and so that age was, like, is a massive blur to me now. Yeah, I've really had to kind of step into mum's shoes become the mum for my younger siblings. Yeah, so that's really tough.
Andy: So when did your mum first become considered, more, dare I say, seriously, unwell?
Frankie: So she had been experiencing sort of abnormal symptoms for a long time. There was an instance where the doctors actually thought she'd had a mini stroke, but nothing came of that. They didn't scan her at the hospital. And yeah, so she had a lot of memory loss for probably over a year, I'd say. And that was kind of alluded to.... They were saying it's, you know, your menopause and stress, that sort of thing. And then it was in January 2020, where I got, I was actually in a job interview, and my phone was ringing my mum. I knew my mum had gone into hospital because she'd gone in with, I didn't know it was a seizure at the time, but she'd had a seizure. But I yeah, I wasn't really worrying about it, and was in the interview, and my phone was ringing, ringing, ringing, which I couldn't answer obviously, it's the timing of it, it's really bad. But I knew something wasn't right because it was just consistently going off. So eventually I looked quickly when I had a chance, because it was like a group assessment, looked in my pocket and I saw a text message saying, I've got a brain tumour and I just kind of froze and had to leave the interview. But yeah, so she was, from then onwards, kind of
downhill, pretty much. She was told to, you know, go home, be of your family, and we were kind of still in the dark at that point.
Andy: Wow, so you found out through a text message? Did you then have to tell your brothers and sisters?
Frankie: I think two of my siblings were with her at the time, and my niece, they were in the hospital with her when she found out, and then I think I was, like beside myself, so I wasn't actually able to... I was with my boyfriend, and kind of fell into his arms. And so I think that probably my other siblings had to let the other siblings know.
Andy: So at that time, had you even heard the word brain tumour?
Frankie: From my mum? Yeah. So just just generally, in terms of being aware of it or not being around I mean, I'm sure I would have heard of it, but I hadn't really. I didn't know the severity of it. I'd never met anyone who'd had I'd never heard of it before in someone that was close to me, or anything like that. So, no, I had no idea.
Andy: No, I was going to say because when I was diagnosed myself in A&E after being misdiagnosed for a while, it's just a whole different set of words you have to get to know. It's big words, it's complicated words, and it's a whole world opens up, which I knew nothing about, which is really scary as well, which is, again, that's partly why we're here today, and it's to raise awareness to try and help others in that similar situation. So what was it that eventually resulted in your mum's diagnosis? Because you said she was misdiagnosed a couple of times? What actually led to her finally being admitted to hospital and diagnosed.
Frankie: Yeah, so yeah, she for the year, sort of running up to her being diagnosed she was constantly going to the GP, you know, headaches, like I said, memory loss, having issues with her vision. She was sent into the opticians to get they said, you know, you probably need glasses they kept saying. The optician didn't pick up on anything. She even had issues with her legs, like, she couldn't walk properly. It was almost like, I guess it was impacting her spine, maybe. So she wasn't able to walk properly. And the doctor gave her some exercises to do, a print out of some exercises. And I mean, I'm not a doctor, but I, you know, I knew that something wasn't right. And I'll always remember that Christmas I had bought her, like these heated eye masks. I'd bought her some CBD oil, because I it was such a big part of her that these headaches and these symptoms, and so I was trying to, like, whatever I could do to help her, yeah, kept sending them back to doctors. And yeah, it was just the constant, you know, being turned away with stress. And then, yeah, it was when she had that seizure. She went into hospital. They found a mass on her brain, and they said that she would need to come and have a biopsy done to diagnose what it was. But they, at the beginning, they were kind of saying it could be a cyst.
Andy: So what was it eventually diagnosed as?
Frankie: So it was glioblastoma.
Andy: yeah. They're, they're the, how can I say it? They're nasty ones, aren't they? I know all brain tumours aren't nice, but those are the ones that are typically very aggressive. And did they explain to you at the time what, what a glioblastoma was?
Frankie: no. So she came home, and I remember she had, like, something, I can't remember what it was, but some sort of document that had mentioned the word on it. And I Googled it, and it was just, you know, very negative. nothing positive. I couldn't find anything. And I was really searching, trying to sort of find something that I could tell her that was was positive, and I just couldn't, and I couldn't tell her I felt so bad that I didn't believe that there was a going to be a positive outcome. And it's a really vivid memory for me that I kind of left the room and I was on the phone to a friend because I was feeling really sort of overwhelmed about it. She came upstairs and said to me, you know, is everything okay? You just sort of looked at that letter and you didn't say anything? sure her, you know, like, Oh no, it's fine. But you know, inside, I knew that, that it was a ticking timebomb essentially.
Andy: So you didn't get anything off the hospital or the NHS or your GP trying to explain it. Did they sign post you to to anyone?
Frankie: No. So I mean I, you know, in hindsight, what I really feel like let down by is that I don't remember her having any sort of pamphlets or being signposted to anywhere. You know, it was kind of on me. I did a lot of research myself, which is how I found The Brain Tumour Charity.
So yeah, I kind of was very much in the dark throughout most of the process.
Andy: Yeah, because I was, I did exactly that. We always say now, don't use Dr Google, because you'll you get the worst possible outcomes and think you're having the worst possible outcomes. But that's what we're here for, I guess, is to try and raise that awareness, so that if people do have a similar situation, at least they they'll know where to go and hopefully find the right answers. So, yeah, so what did the charity do to help you?
Frankie: So it was predominantly.... for a long time, I kind of didn't want to speak to anyone about it, because I thought once I did that, it meant it was real. So I kind of did a lot of my own online research, just reading stuff available on the website, and getting to understand other people's experiences, trying to find some sort of light at the end of that tunnel. Is there other people that perhaps have had this? And I thought, oh, you know, we've only known for a few months now, and some people live up to five years, and maybe we have some time. So, yeah, it was just really helpful for me to kind of, I think the most important thing was that I didn't feel alone. I knew that it was something that other people were going through, and I found the Facebook support groups through that as well, and was able to speak to people of my age, which was important, people who had parents going through it as well.
Andy: Yeah, those Facebook groups helped, that's what really helped me in my darkest hour, because it's it just exactly that, you're talking to people that have kind of been through it, and that can just fill in some of the gaps that you don't get. Well, major gaps. You don't tend to get off the the NHS, should we say, or your GP. So, well, I'm glad you found the brain tumour charity, and I'm hoping it has helped. And, you know, talking to other members of the brain tumour community as well you realise that that these things happen and how hard it is. Is there anything you you'd like to do? Because hopefully today's interview will have a ripple effect, which should hopefully make a real difference and raise awareness. So what else would you like to see done differently to help others?
Frankie: Um, I think education around brain tumours is really important. So for me, coming into this world that, you know, I had absolutely no idea, never really heard of it before, and most people don't know what they are, don't know how severe they can be. And you know, whilst a lot of people do have, you know, benign tumours, and they do survive, a lot of people don't survive. And this cancer, and it's one of the most deadliest cancers, but there's a lack of awareness around it, and that is, you know, a shocking because the fact that if somebody's diagnosed with something like breast cancer, they have a lot more of a chance of surviving, but if they're diagnosed with a brain tumour - that's a cancerous brain tumour -  that outlook is really not good, and they've probably got, you know, a five year prognosis. So just educating people on that, knowing what to look for, helping people feel confident in pushing their GPS. And if they for you, you know your body better than anybody else. And if you know something's not right, then, then, you know.
In terms of support, I think what I found for me and my family was that highlighting the there's a lot of big words that are used that we don't understand. You know, what is a glioblastoma? What? What does this mean? Astrocytoma, you know, all these different lots of words that I didn't understand, and, you know, my mum wasn't the most educated person, and that's really overwhelming. So you're having to deal with this, like diagnosis, but you actually don't really understand what that means, what any of those words means, and it can be really scary. And so just having a bit more support, and, you know, you go into those GPs and they, you know, having pamphlets that are available to signpost to people that can really help you through that horrible period of your life.
Andy: Well thanks, and hopefully you talking to us will really make a difference. It's a tough subject, so thank you very much for coming on and talking about your mum. If I may say so, I think she'd be very proud of you for what you're doing. So let's hope this really does make a difference and thanks for coming on. 
Frankie: Thank you for having me.