I was going around the country, I was meeting patients, I was meeting clinicians. Literally meeting people that were on the same drug as I was at the time and were going, “Oh, how are your hands?” Comparing side effects and stuff. I get it. They didn’t have to worry about whether this minister was actually listening or not or understood what they were saying because I was going through it myself.

Welcome to the Breast Cancer Now podcast, providing support and information to anyone affected by breast cancer.

This podcast contains the personal stories, opinions and experiences of its speakers, rather than those of Breast Cancer Now.

Today’s guest is Ashley Dalton, a member of parliament who is living with metastatic breast cancer. Ashley is the Labour MP for West Lancashire and in her previous role as Health Minister, she led the development of the government’s National Cancer Plan for England. We’ll be talking to Ashley about living and working with incurable breast cancer, the Prime Minister’s reaction to her diagnosis and what the government’s 10-year cancer plan means for those of us living with or beyond breast cancer.

Ashley, welcome to the podcast.

Thank you.

So this is the Breast Cancer Now podcast. We’re going to start with a few Now-related warm-up questions. If money was no object and you could go anywhere in the world on holiday or to live, where would you go right now?

Oh, wow. That is a big question. This is probably going to sound ridiculous, but probably comical. I’m not a big traveller, to be honest, and I do love the UK. And Cornwall’s got really great memories of great holidays when my little girl was little. She’s not little anymore, she’s 26. So yeah, maybe a seaside, beachside house in Cornwall. That would be amazing.

I love that. And as we record, we are heading into a mega heatwave in the UK. So it would be a good time to go as well. If you could have the most talented private chef cook a special meal just for you and your loved ones, what would you order right now?

Well, I mean, if I had the most talented chef, I’d let them decide what they were going to give me, quite frankly. I love food. It is my absolute passion. There’s a fantastic restaurant in my constituency, Moor Hall. I can’t afford to go to the big posh one, but I go to The Barn at Moor Hall, and they do an amazing taster menu where they use local ingredients. A guy called Mark Birchall is the chef there. He’s brilliant. So I would get someone like Mark and say, you show me what you’ve got.

Yeah. Three Michelin star, I believe, and has been voted number one restaurant in the UK.

Moor Hall’s got three Michelin stars. And the sister restaurant, The Barn, has got one Michelin star and is a little bit more accessible for the likes of us. But then there’s also another restaurant in our village with a Michelin star. So we’re like a centre of foodie heaven.

Amazing.

Yes.

And we talk about bucket lists and distant plans, but if there’s one thing from your life list or your life goals that you could do right now, what would it be and why?

It’s this, it’s what I’m doing right now. When I got my primary cancer in 2014, 13, 14, after I completed treatment for that, I said to myself, this is telling you that you’re not going to be here forever, love, get on with what you want to do. And what I wanted to do was be a member of parliament and influence change. And that’s what I’m doing right now.

That is amazing. Well, we’re going to talk about some of the things that you’re doing, but I would just like to say that I am so on the same page with you, having had a primary cancer and then, much time later, a secondary cancer. I’ve also got that real sort of goal, knowing what you want to do with your life, which is great. And what brings you joy right now?

So many things. The weather’s great. It’s warm. My daughter brings me great joy. I just saw her at the weekend. So much good food, there’s joy everywhere. You just have to look for it.

So you’ve just said that you’re doing the exact perfect job for you. It’s everything that you want to do. Let’s hear a little bit about your background. So when and why did you get into politics and what does your job involve?

I’ve always been into politics really ever since I was a teenager. You didn’t grow up in a house with my dad without having to argue your case. He was a very argumentative man and he had views on everything. And so I grew up being expected to articulate my opinion on stuff. He never agreed with it, but I think that was part and parcel. So I was always involved in politics one way or another. I studied politics at university, but then I went to work in local government, not as a politician, but as an officer actually, delivering stuff on the ground. But then I always stayed involved. So I was always involved in the local Labour Party, for instance, because I think it’s really important to me. And I think it stems from the work I used to do as a young person. I was very involved in youth politics. It’s about making sure that people have got a voice and that that voice is authentic and direct. It’s really important to me that wherever possible we get direct voices, not just saying, we think this is what people think. Ask, involve people, and if you’ve got opinions, make sure that your voice is heard because it’s only then that we can make decisions that really have the best impact for people.

Well, just on that topic of voice, people having a voice, we were talking before the podcast started about how in the cancer setting, not every patient feels like they can ask those questions. What would you say to someone who is a sit-back person and takes whatever the doctor says to them, but who actually wants to be able to speak up?

Yeah, I mean, let’s be fair. There are some people that don’t want to do that. And what works for one person doesn’t necessarily work for another person. But if you do want to be more involved, if you are asking yourself what’s going on here, I think I’ve got some questions. My big advice, and it’s something I do myself, is write the questions down before you get there. I literally go in with a piece of paper sometimes with a list of questions and work my way through them.

And I suppose the biggest message is that there’s no such thing as a daft question. Every question is valid. And if your oncologist or your clinical professional, whoever it is that you’re talking to, doesn’t seem to want to answer your questions, maybe they’re not the right person. And it’s okay to ask to speak to somebody else. It’s your cancer. It’s your life, and it’s your treatment. So I very much approach it as a sort of partnership. I’m very much in there. Not everybody wants that. But I think everybody should have the opportunity to, at the very least, ask the questions that they want. And if they don’t get answers that they’re happy with, to ask somebody else and keep going. So I would say prepare is the big, big number one. Write it down. And even if you think it sounds like the most stupid question in the world, just ask it.

Yeah, I do the same. I have the questions on my phone because I will 100% forget them from one month to the next. So I put them in there whenever I think of them. And then when my appointment comes up, I consult my phone and see what questions I had in mind.

Absolutely. I do exactly the same thing, although I’m a bit more analogue and put them in my file of facts. But I keep that going throughout. So I’ve always got that with me and you just think, well, I wonder what that is, and jot that down. So next time you get an opportunity, you can ask the question.

Yeah, brilliant. So you were first diagnosed with breast cancer in 2014 and you’ve got a really similar story to me actually with a long gap between that primary diagnosis and the secondary diagnosis. First of all, how did you find out you had cancer in the first place and what treatment did you have?

Well, it was a bit of a weird one, to be honest with you. I actually found a lump two years prior and it was diagnosed as a cyst. So for about 18 months, that’s what we thought it was. And then one day, the side of my breast kind of imploded and went all orange skin, cellulite, and I thought, cysts don’t do that. So I went back to the GP, got another referral and that was when, it was actually the end of 2013, December 2013, and they said that this was a seven-centimetre breast cancer tumour, ductal carcinoma, and it was present in the lymph nodes as well in my armpit. So that was horrific. There was a terrifying 10-day period where I had the bone scan and the CT and the MRI to see if there was any evidence of cancer, any metastases at that point. They couldn’t see anything beyond the lymph nodes in my armpit. So we went on to treat with curative intent. I had neoadjuvant chemotherapy. That’s chemotherapy before surgery, for about four months. And then I had a mastectomy and all of the lymph nodes in my armpit removed, followed by radiotherapy. And then I had 10 years of hormone treatment because my primary cancer had been hormone receptive.

That was tamoxifen.

Yeah.

And do you believe that the cyst that you had found 18 months before your actual diagnosis was that cancer?

I do.

Yeah. Which had then grown.

Yeah. It is what it is.

It is. Your cancer then returned and spread in 2024. So how did that diagnosis come out?

Okay. So actually I had just stopped taking tamoxifen and started to experience some bloating and I thought, well, that’s a bit weird. Spoke to the nurse and they said that might be what it is. But then I got pain in my abdomen. So I went to the doctor again and they found quite a large lump in my abdomen. And it’s amazing what the human body can hide. It was huge. It was like 20 centimetres by 15 centimetres. And I didn’t even know it was there, but that’s the womb for you. It turned out to be a tumour on my ovaries. And then, so they didn’t know what it was. One of the great myths is that you can have a CT scan and you can tell if you’ve got cancer. They can’t genuinely tell if it’s cancer without taking it out and putting it under a microscope. Anyway, so I was scheduled for a hysterectomy and then it was a case of waiting. But then of course, on my birthday in 2024, I got the phone call to say that what they found was consistent with triple negative metastatic breast cancer.

So the cancer had changed type. So you had a hormone positive cancer, which you’d taken tamoxifen for 10 years, and then it had morphed into, or mutated, is that the right word? I don’t know. Into triple negative.

Yeah.

Wow. So what did that mean for treatment?

I mean, triple negative means that you’ve got fewer tools in the toolbox, basically, because triple negative breast cancer doesn’t respond to hormone therapy. It doesn’t express HER2 protein. So you can’t have Herceptin and the other drugs that work with HER2 positive breast cancers. You’re basically limited to chemotherapy. There are some immunotherapy options if you express something called, I think it’s PD-L1, which is another protein. I don’t. The test showed that I don’t, so I can’t use immunotherapy. So I’m basically limited to what treatments there are available that it will react to. But there are some, so let’s not get too depressed.

Well, yeah, you are on treatment.

I am.

And just going back, how did it feel to find out that it was back 10 years on?

I mean, it was awful. To be honest with you, I was never that person that said, I’m cured. I never did that. I always was very clear that there was no evidence of disease. But I always knew that it could come back. And breast cancer is particularly wily in that respect. I mean, it can come back 20, maybe 30 years after a primary disease. So I was always conscious of that. I wasn’t terrified of it. I wasn’t wandering around in my life, absolutely petrified, but I was conscious of the fact. But it was devastating. And when we initially found out, of course we didn’t know whether it had gone anywhere else. I knew that triple negative breast cancer was in the ovary tumour. But I didn’t know whether it was anywhere else. I genuinely started to think, right, I need to speak to my financial adviser. I need to prepare and get my stuff in order. Then it got weird because I went for CT scans, went for an MRI, all sorts of tests and they couldn’t find it anywhere else. So following the removal of the tumour, I was then no evidence of disease because it hadn’t settled.

No, you couldn’t see it anywhere else.

So it was a bit weird because they couldn’t give me any treatment because if there’s no tumour to look at to see whether or not this treatment is working and the only treatment that’s available to you is chemotherapy, which is quite damaging in itself, why would you make me really, really ill if you don’t know that it’s doing me any good? So I spent six months not on any treatment at all, just careful watching. And that’s weird because you fly from one place to the other. Like, oh my God, next time I get a scan, I’m going to find out that I’ve got weeks to live to, oh my God, it might never come back. You just don’t know. But about six months after that, it popped up again in abdominal lymph nodes. So we know it’s there now.

So that’s when you started having chemo.

And that’s when I started having chemo.

Let’s also go back to the clarity of feeling after you are cured or no evidence of disease from primary cancer. Just tell me about that period of 10 years that you had and how you managed your life in that time. Did you feel a sort of newfound clarity?

Yes and no. I tend not to go down the whole, cancer taught me something. I’d rather not have learned it, frankly. But I did realise that I didn’t have forever. What a disease like cancer says to you is, you are not immortal. You don’t have forever. And if you want to do something, you need to think about doing that. And it was difficult because actually you also feel quite vulnerable. So I might have wanted to do something with my career, but I was really conscious of the fact that I didn’t want to suddenly leave a job that was really good and gave me some really good sickness benefits if actually I might end up ill again. So there’s a lot to balance in that sort of stuff.

But I suppose the other thing that happened to me, and this is very particular, is that when I was diagnosed with breast cancer, six months later, my ex-husband, my daughter’s dad, was diagnosed with incurable kidney cancer. Our daughter was 14 at the time. She had both parents, actually on the same day, she had both parents in hospital with cancer, as I remember, because he was released, he was discharged from hospital after his diagnosis on exactly the same day that I went in for my mastectomy. So our daughter had it all going on. And his cancer was incurable. So we then, I mean, we worked together, but we were still a family. We then spent four years living with his cancer as well before he died. So it was a reminder that we don’t have forever, get on with things, identify what you want to do and don’t wait. And that’s why I ended up maybe taking some risks that I might not have taken before. And it’s how I ended up getting into parliament basically.

Well, let’s move forward a little bit. When you had your secondary or metastatic diagnosis, you were working in the government. What was the Prime Minister’s reaction to your diagnosis?

It was pretty amazing. I was a private parliamentary secretary to Wes Streeting at the time, who was the Secretary of State for Health at the time. And I let him know and I went public with my condition and I said, this is how it is, but I’m carrying on working and everything. And Keir was brilliant. He sent me a handwritten note. It was just so lovely, sort of saying how impressed he was with the way that I’d handled it and the way I’d gone public and asking me essentially what he could do to support me, which is great. Asking people is so important. Not everybody needs the same thing. And he understood that it was important to ask me what I wanted, not just assume. And actually I went back to him and thanked him for that and said, I just need your support to carry on serving this government, which is my priority at the moment. And four months later, he asked me to become a minister.

And to lead the National Cancer Plan, which I think was a real testament to his and the government as a whole’s commitment to making sure that we get lived experience and voices in policymaking that really understand what’s going on.

That’s really cool because you just mentioned before about the security and stability that you feel you need when you’ve had cancer. You feel like, I don’t want to give up this job or this opportunity that offers me stability because what if something happens again? But actually when the thing did happen, you actually got a promotion.

And that, I think, is the message we want to be sending. People with cancer who are of working age can carry on their jobs and we can achieve amazing things. And we’re going to talk in a minute about the cancer plan that you led at that time. But then moving forward, you actually resigned from your position as Health Minister in March 2026 to focus on your health. And you’re still working as an MP for West Lancashire. How difficult was that decision then, given everything that had happened and everything that you’d worked on and achieved, to then prioritise your own health?

It was so difficult and I miss that job every day. I loved it. Really, really loved it. But the reality was it’s incredibly intense and it’s not just a job. Being a government minister, you have to be an MP as well. It’s two full-time jobs essentially at the same time and it is incredibly demanding. I was working 12 to 14 hours every single day of the week and at weekends at least four or five hours every Saturday and Sunday just to stay on top of things. Now, yeah, if I hadn’t been on treatment, that might’ve been okay. I do thrive in that kind of environment, but when you’re on chemotherapy and you’re dealing, particularly for me, with side effects of fatigue, I just found I couldn’t do anything else.

It was exhausting and I just felt dreadful a lot of the time. But I was absolutely adamant that I wasn’t going anywhere until I’d done the National Cancer Plan. That was really important. It’s fair to say that my social life and my family life suffered while I was doing that job and being on treatment. But my wife is extremely supportive and she got it. She was like, I get this, but if you want to stop, I’ll support you to do that when it’s right for you. So I didn’t really want to stop. But what’s really important to me is that let’s not pretend I haven’t given up work, because I was really clear people with cancer can carry on working and I’m still working full time. It’s just I’m not doing two massively demanding full-time jobs at the same time, just the one.

Yeah, that makes total, total sense. So let’s talk about the cancer plan. So for those who aren’t familiar, what is a cancer plan?

Okay, so what the government committed to do, and we did do, was create a plan to address cancer outcomes for over a 10-year period. So that’s what the cancer plan is designed to do. And it covers everything from prevention. So what we can do to try and prevent cancers. And just today, we’ve heard amazing news about cervical cancer, it’s practically eradicated thanks to vaccinations and screening. Brilliant news. So from prevention right the way through to living with and beyond cancer. And that includes everything from diagnosis to treatment to science to research and everything else in between.

We’re going to delve a little bit deeper into various points and various questions I’ve got about the cancer plan. But do you think you could summarise the whole plan in 30 seconds?

I mean, the entire plan is about we want to get to a place where 75% of people with a cancer diagnosis are living five years after cancer, either cancer-free or living well with cancer. So that’s fundamentally what it is. It’s about outcomes, but it’s also about putting patients at the heart of cancer care. And that was what was the really important thing for me.

We should say that a lot of the points in the plan align brilliantly with Breast Cancer Now’s own goals, which we’ve talked about a little bit on this podcast with the CEO, Claire Rowney. How did you work with Breast Cancer Now and other patient organisations to develop the plan?

It was absolutely crucial right from the very beginning. I said, this is what we need to be doing. I initially set up a board where we had cancer organisations. We had Macmillan, had Cancer Research, we had Cancer 52. So on that board, right from the very, very start, I was really clear that what we were not going to do was have a bunch of officials write a cancer plan and then present it to the cancer community and say, what do you think? I was really clear from the very beginning that we need everybody around the table to say, this is what our cancer plan needs to look like from the very start. And we need to build it together. We can’t deliver it on our own. The government can’t deliver it on its own. It has to be a partnership. So it shouldn’t have written it on its own. And we didn’t. So getting everybody involved was crucial. We also invited patients to get involved. There were a number of patient forums, consultations, feedback opportunities.

We recreated, or reinstated rather, the Children and Young People’s Cancer Task Force. They practically wrote the chapter on children and young people, first ever cancer plan to have a chapter on children and young people. We worked really closely with patient organisations and voluntary sector organisations, including Breast Cancer Now, to make sure that wherever possible we could reflect those ambitions and the understanding of the community because that’s what really, really counts.

And there’s so much knowledge in those organisations. Just in Breast Cancer Now, there’s so much, so many of those forums and so many patients been spoken to already and so much information and knowledge has been acquired over the years that it totally makes sense to share that information. And that’s how you get a better plan.

Yeah. I mean, some people did say to me that, “Oh, when he launched this plan, everyone was on board. How did you manage that?” Well, co-creation, but we didn’t do that just so that people would like it. We did it so we get the best plan absolutely possible.

And what was it like for you working on this massive project surrounding health and cancer whilst dealing with cancer yourself?

Such a privilege. It really is a privilege. And also, I was going around the country, I was meeting patients, I was meeting clinicians. And when I met patients, it was great in a way because they’d say stuff to me and I get it. Literally meeting people that were on the same drug as I was at the time and were going, “Oh, how are your hands?” Comparing side effects and stuff. I get it. They didn’t have to worry about whether this minister was actually listening or not or understood what they were saying because I was going through it myself.

And I think being able to say, yes, this is happening to me. And when you’ve got cancer, you also know that your experience is your experience. It’s not the same for everybody else. And you’re able to respect other people’s experiences as well. And just offer my own vulnerability a little bit, which I think helps other people be a little bit more vulnerable in terms of expressing what they thought it should be.

And Wes Streeting has also had cancer as well, of course. There was knowledge there as well. So let’s delve a little bit deeper into the nitty-gritty of the plan. Breast Cancer Now’s vision is that by 2050, everyone with breast cancer should live and live well. The government’s ambition is that from 2035, 75% of people diagnosed with cancer will be cancer-free or living well. That is a bold ambition. What do you think is needed to achieve it?

It’s lots of things and yes, it is bold. But to be honest with you, some people said to me, why is it not 100%? But we know that’s not realistic. And we’re talking about all cancers here. But there’s a lot of things in there. It is about prevention as well. It’s about saying, look, if it’s possible for us to do things that mean that there are fewer instances of cancer, then let’s do that. That would be the best thing, right?

But then it’s also about research, making sure that we’ve got the research that we need, not just producing drugs, but understanding the diseases better so that we can understand treatment better. And then also understanding more about how people react to treatment and how they respond to treatment. But there’s all this stuff in there as well about how people are accessing treatment. It can be a bit of a postcode lottery, quite frankly. And it depends where you are on whether you can access certain kinds of treatment.

It’s not just about treatment, it’s about support and engagement because we aren’t one thing. People with cancer aren’t just somebody with cancer. They’re also part of a family. They have a job, they may have children, all sorts of other things. And so it’s about what holistic support can we make sure is wrapped around a person so it becomes easier for them to actually cope with having a cancer diagnosis and to live well. And of course, living well is a very subjective thing. What does that mean? So it’s about saying we need to make sure people are supported to identify what’s important to them and to be able to pursue that and get that.

And the government can’t do that on its own. This is about the voluntary sector. It’s about local authorities. It’s about society as a whole, better understanding of what cancer is and how it affects people and how people live with cancer. And I really think that that’s really important because I think we’ve got very little understanding in society as a whole about what living with cancer actually looks like.

Just going back to the postcode lottery that you mentioned there, that’s something that we hear about all the time across all areas of health. Waiting times, the amount of people I speak to all over the country that have a similar disease but get given completely different scans, sometimes it’s a PET scan, sometimes it’s a PET CT, sometimes it’s just MRI, sometimes they don’t even get a scan. What’s being done about the postcode lottery side of things to kind of standardise across the country?

I mean, there’s a couple of things there. Not everybody will get all the same scans. Sometimes that might be because of the nature of their cancer. It might be because of the nature of them and maybe some other condition that they’ve got. It can’t just be the preference of the oncologist and the clinicians that you’re working with.

But what we don’t have, and it’s not actually in the cancer plan, but it’s something that I’m keen to explore further, is looking at quality standards for cancer care. What we do have in the cancer plan is a commitment to meet cancer waiting times. And they’ve not been met since 2015. That’s 10 years, more than 10 years now. And the previous government made no commitment to meet them.

So in that plan, it says we will meet these cancer waiting times and we’re challenging trusts and supporting trusts as well to make sure that they hit those. And it sits alongside all of the other stuff that’s in the government’s 10-year plan for health. So things like community diagnostic centres and making sure that there’s more of those, that they’re open six, seven days a week, means that people can get those diagnostic tests far more easily than they used to be able to. It doesn’t have to be completely, it’s not streamlined entirely in the cancer service. It’s about the wider NHS. And we’re looking at reforming the NHS right across the board. Single patient records, single patient identifiers, it’s going to be so important.

Can you explain what you mean by that?

Yeah, so at the moment, most people actually assume that in the NHS, their medical record can be seen by everyone. It can’t. Your GP’s got a record, one hospital that you’re in has got a record. If you’re getting treatment for something else in a different hospital, and particularly if it’s in a different trust, they can’t see your record from the other hospital. They can’t talk to each other. Sometimes it’s absolute chaos. I tried to get a blood test in London and trying to get the results given to somebody in Liverpool. It’s like a major, major bureaucratic logistical nightmare, which just seems daft. We should be able to have one person, one record shared across the NHS because otherwise stuff gets missed, stuff gets duplicated, it’s not efficient, things get missed. So that’s another way that we’re going to make it better for people with cancer, but also better for everybody right across the board.

So is that something that’s in progress to be done?

Absolutely, yes. That’s part of the 10-year health plan.

Okay, and is the reason for that just these old NHS IT systems that we’re used to?

Yeah, basically because there’s different trusts right across the country. They’ve all got their own procurement methods. They’ve all got different systems and they don’t necessarily talk to each other. It’s that simple. And I must admit, I do find it frustrating because I’ll be going about my business in the NHS trying to get my treatment or whatever. And I’m sure everyone that’s listening will have experienced this. I’m sure you have. Someone says, “Oh, no, we can’t do that. The system doesn’t do it.” And I’m like, the system does not exist in nature. The system is something we have created as people. And we could make a different choice. We could choose to do it differently. So let’s do that.

And what’s the timeline for the single patient?

I’m not entirely sure at the moment. It’s not an area that I worked on specifically, but that’s within the 10-year health plan. So it will be within the next at least five years, I would have thought.

It needs to be, we’re in 2026, so it needs to be an age where all of this can be standardised and your records can be checked.

Completely.

Across hospitals.

What does the plan mean for people like you and me who are living with metastatic breast cancer?

Well, for the first time ever, actually, there is proper reference in this plan to people living with metastatic cancer or cancers. I was really clear about that. It’s been an add-on in the past. It’s almost been a forgotten thing. And I think, let’s be brutal. Those of us with a metastatic disease, we often, I think, think, oh, well, they can’t cure us, so they don’t bother counting us anymore. We’re not going to be a good news story. So they just don’t want to know. And that’s how it felt. And I was really clear I was not going to let that happen with the cancer plan. And that I was not going to let us write people off because they’ve got a metastatic cancer. So for the first time ever, we’ve got actual commitments in the cancer plan around metastatic cancers and recognising that people live with cancer and can sometimes live with cancer for a long time. But also, even if you’re not living for a long time, that doesn’t mean to say that you shouldn’t be living well.

So that’s what there is in there for a start. And the biggest thing that I really wanted to make sure was in there was that we start counting. Now, we don’t know how many people have got metastatic breast cancer in this country. We think it’s what, 61,000? But we don’t know. I mean, it’s ridiculous when you say that out loud, isn’t it? We don’t know because it’s not counted. It was meant to be started to be counted in 2013. That was the year I was diagnosed with my primary breast cancer. And we’re what, 13 years on and it’s still not being properly reported. So there’s a clear commitment in the National Cancer Plan that we will count people with metastatic cancers and we’re going to start with metastatic breast cancer.

Now I’m not the minister for cancer anymore. But this is something that I’m going to be pursuing and I’ve met with Breast Cancer Now since to talk about how we can do that and I’ll be meeting soon with the new minister to talk about what’s being put in place to make sure that that happens because it’s gone on too long now, we need to start counting. And some people say, well, why bother? The point is if we don’t know how many people have got metastatic breast cancer, how can we make sure that we’ve got the services that we need? How can I confidently say to people, you will get the service that you need.

You will get the drugs that you need. You will get the nursing support that you need. You’ll get the voluntary sector support that you need. If we’ve got no numbers to work out how many people need that. What about social care? It’s just ludicrous.

Yeah. We were talking to Laura Ashurst, who’s lived with metastatic breast cancer for nearly 20 years on this podcast. And she was saying that she’d said to Rishi Sunak, pre-COVID, that we didn’t have the numbers of people living with metastatic breast cancer. And he was astounded because as a money and numbers man, he was like, well, how can we possibly know how much we can invest in drugs and treatments if we don’t know how many people have got this disease? The likelihood is that there’s way more than 61,000 people living in the country with this disease. And we’re also living longer. You said people can live for longer with this disease now. And whilst we’re living with the disease, we’re working, we’re parenting, we’re contributing to society. And so we are a hundred percent worth investing in.

And if you look at it as well from a more economic or investment perspective, if we don’t have those numbers, how do we show to the pharma companies that this is worth spending money on? Because, not to put too sharp a point on it, they don’t want to invest in drugs that aren’t going to make them money. We have to convince them to do that. So if they think that there’s only a handful of people that are going to have this, why would they bother? Actually, if we can show them, look, there’s this many people that are going to benefit, this many people that you can sell it to, they’re more likely to put the investment in.

Yeah. I mean, I’ve been on ribociclib for four years. Pretty sure that’s, I don’t know how much that costs, but that is making a drug company a lot of money for sure. And the longer we can live on those drugs, the more money they’re going to make. So yeah. And what’s the reason we don’t have those numbers? Is it to do with the thing we were talking about, about the IT system?

Do you know, I don’t know. I don’t think it is just the IT system. I think that’s part of it. I mean, what we do know is that we can accurately count people that are diagnosed de novo. So people whose first diagnosis of breast cancer is a metastatic diagnosis, that goes on the record, you get counted. Of course, for those of us that are diagnosed after a primary, that might be six months after a primary, six years, 10 years, 20 years, we don’t know. It doesn’t seem that that gets captured properly. And I think essentially, I mean, I cannot fathom that it can be that much more difficult than just, it’s literally counting, right?

So when somebody gets a diagnosis of a secondary breast cancer, you just put a tick in a box. I mean, how complicated can that be? And I think one of the issues is that trusts just aren’t feeding that data into the national records for some reason. I don’t know what it is, but we need to get to the bottom of it and we need to turn it around because I refuse to accept that there’s something terribly complicated going on here, quite frankly. It’s literally adding up.

And that’s all metastatic cancers, not just breast cancer.

Well, we want to make sure all metastatic cancers are counted, but for the sake of the cancer plan, what we’ve said very clearly is that this year we will have in place the system to do that for metastatic breast cancer. So that will be first.

Let’s talk about access to treatment. So we’ve talked on this podcast before about the campaign to get the drug Enhertu approved in England, Wales and Northern Ireland. And in fact, Hannah Gardner, the patient who came on the podcast in 2024 to talk about the campaign, I know you also met her, I think in parliament, has now sadly died. Why are drugs like Enhertu for HER2-low breast cancer not being approved in England when they are available in so many other countries?

Well, it’s about the process that they have to go through and it’s a decision that NICE makes. And I know that the previous Secretary of State, Wes Streeting, has been in contact with AstraZeneca and other providers and NICE to say, can you please get together and sort this out? It’s about how they measure impact and value for money. I think one of the big issues is that NICE changed the way that it does that in terms of something called a severity modifier. I’m not going to pretend to understand exactly how it works. But that has led to quite, not just Enhertu, but a number of drugs that might previously have been approved, not being approved.

And I think we really need to look very carefully about this and what the benefit is. I mean, fundamentally, there is an issue, I think, with pharmaceutical companies asking astronomical amounts of money for drugs, which seems ludicrous. Interestingly, this goes back to our counting the data. How do we argue to those companies that this is unreasonable if we can’t say, look, this is the market that you’ve actually got to go on? They’re going to charge more if they think that they’re going to sell fewer units of it. So it all feeds in really. But we are hopeful that they are in conversation. I know that the previous Secretary of State was pushing for them to find a solution. I’m sure that the new Secretary of State will continue to do that. And hopefully we’ll get somewhere towards a solution. I 100% understand the frustration, particularly of people who can access it if they, that you can access it if you live in Edinburgh, but not Eastbourne. So what’s going on with that? And I think people find that very difficult to understand and I get it.

Absolutely. And what do you think should be done to make sure future drugs will be available to all the patients who need them and to make sure patients like Hannah don’t die without access to the drugs they need?

I mean, I think it’s very difficult. So obviously we can’t just say there an absolute uniform. Everyone gets everything that they want because not everything’s going to be effective. Not everything is going to be worth it in that way. But what we do need to do is to be really mindful of actually where are kind of freak decisions being made? Because it does seem bizarre that Enhertu is not available in England and it is available in 28 other countries.

Including Scotland.

Including Scotland. So there has to be a question for those drugs because this isn’t about actually, it’s not actually that impactful because plenty of other places have found that it is. So it can’t just be a blanket, everybody gets anything that they want. There’d be all sorts of stuff on the market that actually was just a complete waste of time. But we need to be mindful of where it’s working and where other jurisdictions have found this to be helpful. What’s really getting in the way? And if it’s just about money, let’s have a proper conversation about that.

Is it fair to say that the counting, the collection of data on metastatic breast cancer patients is a real top priority to you at the moment? You were speaking on it last week.

Absolutely. It’s fundamental because how can we do anything if we just don’t know what we’ve got? I mean, it doesn’t make any sense whatsoever. And it’s not just about treatment. It’s about monitoring how things are doing. We’re talking about how long drugs might last for somebody. What if we’ve not got you counted? Then when you die, we count you when you die. That’s it. But we haven’t necessarily got the data to find out how long you went on a particular drug or whether this happened or that happened. And we can’t learn from that. It just seems daft to me.

So it’s fundamental.

Yeah. I know my oncology team has that data on me.

Right.

And I’m sure your oncology team has that data on you.

Hopefully it is just my oncology team is sending that up, quite frankly, because—

Yeah, they’re part of The Clatterbridge and Carlo Palmieri, who’s arguing for all this as well, is part of that team. They’ve got it, but it’s not being reported at a national level and it’s not complete. I mean, not all trusts are not reporting, but not enough to make it actually worthwhile, which is just ludicrous.

How much do you worry that your next line of treatment might not be available to you, that you might not be able to get it or that the drugs just aren’t being developed fast enough?

I don’t worry about that. I don’t think there’s much point worrying about it. But what I do do is commit my professional life to trying to make sure that that’s not the case. It’s not about me. It’s about the thousands upon thousands upon thousands of others. If you look at one individual, anything could happen and who knows, I could get every single drug that’s possibly available. None of them might work. I don’t know. I don’t worry about that because I don’t find it helpful. I just sort of, I genuinely wake up every morning and if I can fill my lungs with air and breathe out again, I think fine, that’ll do today. But it is still important and that’s why I’m spending my time in parliament raising issues like counting metastatic breast cancer, raising issues like making sure that we’ve got the research that we need for cancers and pushing forward on the cancer plan because I led the writing of it, but it’s utterly useless if it’s not delivered. I spent a long time working really hard on writing that plan and I’m going to be spending my time in parliament, making sure that it’s pushed forward and being delivered.

Okay, brilliant. So you’re still knocking on their door. You’re the one making sure it’s all going to happen.

I know where their offices are.

Another point in the cancer plan is the creation of a national database for people at an increased risk of cancer. So it’s called the National Inherited Cancer Predisposition Registry. Whoever wrote that one is keen on a long, unpronounceable name. Now I know this has already been done because I got a letter out of the blue recently saying I was at greater risk of developing breast cancer, good for you to know, could I come for a mammogram, though I’ve had it for 14 years. And actually when I got to the bottom of it, I traced it back to the fact that this registry had been created. I’d been added to it and therefore something had triggered in a local hospital that I’d never heard from before.

Okay.

That I should be added to it. So I know that that’s happened. But what is the aim of the database and what does it mean for people who have or may have gene mutations like BRCA1, BRCA2, PALB2?

Yeah, so it’s about raising people’s awareness about their own risks so that they can make decisions about their own choices, what scans they might want to access, what lifestyle choices they might want to make. And it’s not just breast cancer, obviously, it’s all cancers. And it does include things like genetic mutations, although I really think that it is really important to always state that the vast majority of cancers are not genetic. It isn’t something that’s necessarily inherited, but it can be. So it’s about people understanding their own risks so that they can manage it more effectively.

Let’s talk about breast screening. We know that survival can be almost a hundred percent when breast cancer is found early, but there are barriers to screening in certain communities. That’s something we’ve talked to multiple people about on this podcast. What are those barriers and how does the plan tackle the challenges, particularly in ethnic minority communities?

Yeah, I mean, there are wide barriers, but let’s not pretend that we have not come so far. I think we’ve reduced the number of people dying from breast cancer by about 80% since screening came in place in the eighties. It’s massive. But we still have somewhere to go. But we are very much looking at particular communities. It’s about making it easy for people. I go around the country talking about the cancer plan and the national, the 10-year health plan. I spoke to lots of community groups and organisations and it’s really clear to me that what matters is building trust in communities and finding trusted voices in communities to support people to access the services. So there’s a whole different way that we can do that. And it’s not a one size fits all. It needs to be done on a community-by-community basis, really.

And I’m hopeful that with challenging trusts and challenging ICBs to monitor their performance better and to work more closely with communities, they can target those services in a way that people can access better. Whether that’s about taking mobile vans into particular communities, whether it’s about actually giving people an opportunity to leave their community to go and access that service, because that might be easier. For some people, it will depend, but it’s working with those communities, the voluntary sector as well, I think is really crucial and raising awareness amongst people of what difference it really, really can make.

Yeah, I mean, there’s distrust in the NHS and there’s also different beliefs in different communities. Just in the last couple of podcast episodes, we’ve had people mention that in some communities, they just don’t think that chemo is right, that you shouldn’t accept chemo, for example. And then there are other communities that say, if I get a mammogram, it’s because I’ve got breast cancer, as opposed to understanding that you have a mammogram so that you don’t, to make sure that if you have got signs of it, you’re treated really early. So it’s about education in all these communities. And nine times out of 10, that’s about trusted voices.

Yeah. No point for me wandering into a Muslim Asian community in Leeds. One, I’m from Lancashire, they’re not listening for a start, and saying this is what’s best for you. That’s not what it’s about. It’s about trusted voices in those communities and there are many. And I’ve met through my time going around the country, so many fantastic, many women in communities that have experienced cancer for themselves and are now using that knowledge and the contacts and the trust that they have in their communities to help other women access those services and that’s what’s most powerful.

The three things I’m most proud of actually in the plan are the reference to metastatic disease and metastatic breast cancer. Obviously, I’m going to say that for unsurprising reasons, but also the children and young people’s cancer chapter I’m really, really proud of. And we also managed to get in there a commitment to a travel fund for children and young people, which I’m really, really pleased we managed to do. And I’ll be chasing that up as well to make sure that happens.

And also we got the first ever chapter on rare cancers. And that would include things like lobular breast cancer as well. So the government supported the rare cancers bill. And when I was at the department, I began the work and it continues now of bringing together consortiums to work on rare cancers, particularly brain cancers, where you’ve got very small numbers of people with a particular cancer. It’s very difficult to get the research going because there’s not enough people to test stuff. So bringing in consortia so that they can share the risk and stuff I think is really important. So there’s some good stuff that’s been started, but let’s not pretend that it’s job done here. There’s things that are being started and it’s down to all of us, me included, but all of us to keep the government shoulder to the wheel and keep pushing to make sure that things are actually delivered.

And it just doesn’t stay as a pretty plan that sits on a shelf gathering dust. Well, that’s the thing with such an ambitious plan with so many different points to cover and so many different things to achieve. How do you manage to achieve all those things?

Bit by bit, one bit at a time. And it’s not one person trying to do this, it’s an entire community. But it’s about all of us from right across the cancer community saying, do you know what? I’m going to pick up this bit and I’m going to keep pushing on that. I’m going to keep pushing on that. I’m going to be pushing particularly on breast cancer. And I’m going to be pushing on the children and young people’s travel fund and stuff. There’s other organisations that will be doing the same. And I would say, absolutely, come on, let’s get on with it. Because what I do know, having served in this government, is that it is not a government that doesn’t want that attention. It is a government that says, step up and demand of us. And I would say to everybody that’s listening, whatever you can do to make sure that we keep pushing to make things happen, do it. You’re not being difficult. This isn’t bad behaviour. We live in a pluralistic parliamentary democracy, which means every single one of us has got a responsibility to keep pushing and make sure that we get the change that we need to see.

And for you personally, how do you find hope when living with metastatic breast cancer?

I suppose I’ve always been pretty pragmatic really. And none of us knows how long we’ve got, whether we’ve got metastatic cancer or not. So I just keep going day by day, really. I don’t know what’s coming any more than the next person. What can you do? I try not to dwell on, sometimes I get sad. Sometimes I feel that things could be a bit bleak, but actually I don’t find that terribly helpful. I just keep putting one foot in front of the other and try not to put, it’s difficult because you feel foolish if you try to plan too far ahead. I don’t know if you feel this, but I feel like, don’t be an idiot. What are you doing? Plan a five-year plan. Who are you kidding? But actually, why not? Because the last five-year plan I had could have ended with me walking in front of a bus. You just don’t know.

Do you have a five-year personal plan?

Always.

Do you? Is there anything that you can disclose from it?

I mean, at the moment, it’s very much focused on what I want to achieve in parliament.

Right.

So I’m in the process of my five-year plan, which is basically the end of the parliament. So what do I want to do with that? I mean, already I’ve exceeded it because I had no intention, I had no ambition to be a minister whatsoever. That wasn’t part of the plan, but I’ve already done that. So now it’s about looking at how I maximise my impact as a backbencher between now and the next general election.

Is it fair to say that your purpose, the thing that keeps you going, is work?

Yeah, I love it. And yeah, I’m not saying that everybody should have that. That’s not what drives everybody, but it’s who I am. It’s what I love. When I first got my diagnosis, I’ve said this, told the story before, they were saying, well, these are the benefits you can claim and this is how to talk to your employer about giving up work. I was like, hold on a minute. I haven’t even had an MRI yet. We don’t know where else it might be or what the treatment plan is. And you’re saying to me, would you like to give up the very thing that gives your life meaning, purpose and joy? No, I don’t want to do that. And I do know that sometimes people judge me for that because work isn’t that important to everyone and that’s okay. That’s absolutely fine. If what’s important to you is spending time with your family, do that. If what’s important to you is, I don’t know, you want to take up photography, do that. It’s always been my passion to be in parliament and to be in politics and to do what I’m doing. And I’m not giving that up anytime soon.

It’s what you’re able to do as well. Some people aren’t able to work. They’re not physically able to work with the treatment that they’re having and the effects of it and they have to give up work. There are other people who would love to give up work, but can’t for financial reasons. Everyone’s scenario is completely different.

And it depends on what your job is. So for instance, my late ex-husband was, at the time he was diagnosed, he was a carpenter and the cancer had spread to his bones and he just physically could not do the job that he’d been doing before. He specialised in sash windows. He couldn’t lift them up anymore. He didn’t have the strength. But what he did do was go back to his first love, which was art. And he had two, three art exhibitions in the time that he had cancer before he died, which he would probably not have done before. So it’s about finding what brings you joy and focusing on that. And that’s going to be different for all of us. And I’m lucky. I can be flexible with my work. There’s no heavy lifting. So I’m able to carry on doing what I do and it drives me and it gives me energy. And I’ll be doing it for as long as I can.

Yeah. As long as the voters allow me.

And it is really genuinely good for the brain and the body to keep working and keep the mind working and keep doing something that gives you that purpose.

I think so. Yeah. It does help, I believe.

We’re not done yet, are we?

We are definitely not done yet.

Although we are almost done with the podcast. What’s the one thing you’d like people to take away from this episode?

I think the big thing is ask questions and don’t be afraid to ask a stupid question because there’s no such thing.

Ashley, thank you so much for joining us on the podcast.

My pleasure.

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