Episode 65 part one - The cost of a brain tumour diagnosis

The Brain Tumour Charity has released its report into the staggering cost of a brain tumour diagnosis to the UK economy. The report makes the economic case for a National Brain Tumour Strategy to minimise these costs - both to the individual and to society. 

In part one of this episode, Anna unpicks some of the report's findings with Kimberley, who's living with a brain tumour diagnosis and Rhiannon, who's caring for her son following his ill-health. They discuss the impact on their own finances. 

In part two, Chandos interviews Marcus - Head of Policy and Campaigns at The Charity - to dig deeper into the report's finding's.

To find out more, you can download a copy of the report on the charity's website.

Thank you for listening. 

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

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

Transcript

ANNA: The Brain Tumour Charity recently worked with its community and health economists to put together its most comprehensive report yet on the financial impact of brain tumour diagnoses, not just on individuals, but on society as a whole. We'll dig into the details of that report later. But first, let's meet Kimberley, who's from Staffordshire, and Rhiannon, who's from Cheshire. Welcome both of you to the podcast.

KIMBERLEY: Hi

RHIANNON: Hi

ANNA: Thank you both for your time today. Obviously we understand that finance is a really complex and personal issue. So there might be some things that you don't want to discuss, which is absolutely fine, but can I start by asking you both, kind of, about the immediate impact that brain tumour diagnoses have had on your family. Kimberly, I'll come to you first. 

KIMBERLEY: Yeah. So when I was diagnosed, it was out of the blue. There were no warning signs to it, which I know, as are a lot of other people that are diagnosed with a brain tumour, but yeah, it just came from nowhere. And I'd had a little bit of time off work already with migraines, and the lead up, I suppose, to my diagnosis, but then from there I went.... So I had a seizure. I went straight to hospital, and then, I was, the next thing I knew, I was having brain surgery. So my husband had to take time off work. He had to go on sick from his job so that he could look after our son. And my son was five when I was diagnosed, and he was looking after our son and coming up to the hospital to see me and make sure that I was okay as well. And then eventually it all started getting so much that he was working two jobs to provide for our family. Why I wasn't able to work. So, yeah, that's why I've sort of come on here really. It is really important that we highlight this, the financial struggles that come from having a brain tumour or being impacted by a brain tumour diagnosis. 

ANNA: So following treatment, I understand that you've been able to go back to a new role that's part time now. Can you talk to us a little bit about how that's going and why you chose that decision, and kind of, how it's impacting being able to spend for Christmas and things like that. Obviously, you're adding a little bit of extra income again. 

KIMBERLEY: Yeah. So I'm a teacher, and I did go back to work originally, on a phased return to start back teaching. Now, unfortunately, I'm in a role that is part time, and it's not my job. I'm a teaching assistant at the moment. The part time hours are a lot more manageable for me. I'm a lot less tired. I can cope more with balancing work life and family life. So, yeah, I think at the moment, while I'm still getting better, even though I've been stable for quite a while now, I think it still takes its toll, the fatigue and, you know, feeling a bit overwhelmed sometimes, and obviously in a school very overwhelming sometimes, but yeah, so I'm in a different role than than what I was prior to having the brain tumour. 

ANNA: And what prompted, almost, your decision to go back? Was it more because of finances, or was it just because you had the passion for it and still wanting to work while you're recovering?

KIMBERLEY: I do have the passion for my job. I absolutely love what I do, but it was money. It is that, you know. I mean, now, I would like to think that I don't work to live.... live to work, sorry, and I work to live, you know. But at the time it was not, it wasn't feasible to carry on living the way we were. So I never really saw my husband, because he was going to his normal day job in the day, and then as soon as he got back in, he was going to work again. So you don't have a lot of choice. To be honest, I think, before you're diagnosed with a brain tumour, you're living life normally, and you know what your income is, and you're stable to know what you can afford. So you have things like, you know, we had had a nice car, and, you know, we've got the house that we live in, and we've got all these things, then just because you've got a brain tumour, the mortgage doesn't want to stop being paid, does it? etc. So, yeah, it's it was the reality of, that's it.

ANNA: yeah, yeah. I can only imagine how kind of difficult that adjustment is obviously trying to maintain your life as it was before, but obviously things aren't, aren't the same. So thank you so much for sharing all of that. Rhiannon, I'll come to you. How did your son's diagnosis affect your family financially? 

RHIANNON: Yeah, so once he was diagnosed, it meant that I stopped working. I also work in a school, funnily enough, but I'm on the admin side of it. But I was full time, so yeah, it meant I couldn't, couldn't work any longer. My son was only six at the time, so someone has to be in hospital with him at all times. So my partner continued to work and look after our other son, and I was just living in the hospital, basically. So yeah, financially it did, it did impact us. My work were really good,  and they did continue to pay me for quite a while, which was great, but then, obviously, at some point it dropped to half pay, and then it went to sick pay. But when it came to my partner's work, they were not, not as helpful at all. He had some time off when our son was being treated with radiotherapy, because that was away from home. He had some time off for that, and that was it. They made it very clear that anything after that would not paid. So it was quite... Yeah, definitely feeling the impact now, towards Christmas this year. I went back to work part time in a similar role to what I was doing before, but not quite the not quite the same. And I did purely go back because I just couldn't afford to be on sick pay anymore, and it was probably due to run out as well, I would think. So it is a bit of a struggle to try to sort of arrange appointments, deal with my sons... the school side of it, sending him back into school, trying to organise an ECHP and all these other things, because he still can't go back to school full time, which is why I can't go back to work full time either when he's at home and for any appointments and things he needs to go to, which is just, you know, it's really sort of preventing me from from earning any more money at the moment. 

ANNA: Yeah, no, that's hard. It sounds really difficult. And like you mentioned, especially at this time of year, I think everyone notices that financial squeeze a little bit more around the festive period. But when you've got a brain tumour diagnosis that you're dealing with as well, I can imagine it's a lot more difficult. So you've both had to kind of manage that drop in income alongside, kind of, obviously, all of the emotional feelings of dealing with the brain tumour diagnosis. What do you think has been some of your biggest challenges? Kimberly, in terms of kind of balancing that and what you've what you've faced so far? 

KIMBERLEY: I think knowing, knowing when to stop for you. So for me, I worked and worked and worked before the brain tumour and I went back and tried to do the same again. And to an outsider, that probably sounds like it's going to be unsuccessful from the beginning, but from my point of view, I wanted the old me back. I wanted to do the things that I was doing before. I wanted to be just fine. I wanted to go back to normal. And I think that's my biggest challenge, and still to this day, not knowing what the future holds, not knowing... And that's not just in terms of work it's in terms of life in general not knowing what's around the corner, and I think to have that extra pressure of, well if I don't go to work, do I go full time to get more money? But then I have a different outlook on life now where I want to make memories with my son, and picking him up from school twice a week when I'm on my shorter days, but then also the pay isn't the best that I'm now with me being part time.

ANNA: Yea that is difficult. What would you say to anybody who might be listening who' facing similar battles with themselves, being stuck between those places and at a bit of a low point at the moment dealing with a diagnosis?

KIMBERLEY: I think I'd tell them to stop listening to everyone who says don't worry about it, it'll all work out in the end. Because I think that's the worst thing you can tell anybody when you're going through what we've been through and what Rhiannon's son's been through. You've got to do what's right for you. You've got to do take it at your own pace. And you've got to make sure that the environment, the place where you're going back, is 110% supportive. I had my neuro-psychologist  do a report and she did some memory and cognition tests with me and I made sure all that was prepared - obviously being a teacher - I had all that sorted out before I went back. I even directed my line manager towards your website on advice for employers. Because I do think it's so difficult when someone hasn't experienced it, to actually understand why you might be the way you are, you know, and people are saying, oh, you know, how can you be tired? You've just had half term off. And I think, yeah, but I've just had a brain tumour as well. So combine the two. Do you know? So I think, yeah, just make sure what you're doing is right for you, and utilise everything that's offered to you. I've been really lucky with my neuropsychologist. She was offered to me straight away as soon as I, well, before I left the hospital, actually, and she was really good in giving me strategies and things like that. So yeah. 

ANNA: I'm glad to hear that you have had such a good experience with her. And yeah, you touched on that element of educating, educating people around you on kind of the difficulties and the challenges that you are facing, which is exactly what we're trying to do with the podcast, as well as obviously, try and educate people a little bit more and help with that too. And Rhiannon, I know you already addressed quite a few challenges when you were mentioning that you didn't have maybe such a good experience in terms of your husband's work, not being as supportive. Is there anything else that you dealt with that you found really difficult? 

RHIANNON: I mean, the whole process is difficult, but for me now it's, it's. When you're going through it, you just, sort of the adrenaline's high. You just, you're just dealing with it. Everything comes at you, and I feel like, after treatment stops, and you get time to reflect, and you're sort of left alone a little bit, I would say that is probably one of the worst moments, because you just you just then, am I making the right decision? Like, should I be taking him to hospital at this point? Like, and, you know, he's not the same child as what he was before the diagnosis, due to just due to the whole treatment in general. So he is, he is different. I find that extremely challenging, not just like behaviours, but personality like has sort of changed a little bit, whether that's long term or not. Who knows? He only finished treatment in March, so it's probably a bit soon to tell. But, for instance, going through the EHCP process at the moment, it's just something that I never thought I'd do. I working in an SEN SEMH school, and, you know, I'm around children, you know, with the HCPs all day. And it's just, I just never thought, I guess, that I would, myself, would be dealing with that and in that sort of situation. I mean, that's probably been the hardest part for me, you know. But above money, above anything else, is the after, once treatment's done, and it's just the waiting then, you know, is, is it cured? Is it not cured? And will he go back to the same as, as, to the same as what he was before, really challenging. 

ANNA: Thank you so much for sharing that and yeah, passing on our best wishes, of course. But is there any advice you'd give to anybody else who is currently kind of facing the diagnosis of a child? Anything that any words of support that you could offer them who might be listening? 

RHIANNON: Yeah, I would say, never be afraid to accept any help that is offered to you. You know, if anyone's always do anything I can do for you, yeah, if you could nip to the shop, for instance, or just sit with the child whilst, you know you while the parent nips out. Or I'd say you're a lot stronger than you think you are, and even on the worst days, like you will pull through it. Whatever the outcome is like you will get through it. It's just you might not feel like that at the time. Oh and always remember to take an email address or a telephone number for some of the people you speak to, because the more I feel, I feel like the most contacts you can have is best. You know, when you get to five o'clock on a Friday night you've got a million people you can contact. 

ANNA: Thank you. Thank you for sharing that. Is there anything else that either of you want to share while you are on the podcast today? 

KIMBERLEY: I think that, Rhiannon, I've just got to agree completely with what you've said, it's the aftermath. You go into hospital and all of a sudden you've not got a visitor every day at three o'clock when it's in the same time. And yeah, that is the hardest part. And just touching on what you said, Rhiannon, is, you know, when you say you will get through it. When people kept saying that to me, it was, I don't know if I can, and then I met this one lady in hospital, and I'd really like other people to hear this, because it has helped other people that I've spoken to in my time that I was in hospital. And this lady says to me, what we've got, remember, this is just temporary. And every time something, you know, I have a bit of a rough day, and that's all I think. This moment is temporary and I'll not necessarily get better, but we'll get through it. And it's a temporary moment. It's a temporary situation that will change, whether it be, you know, just slightly better or or whatever. But yeah, I think hats off to you, Rhiannon, and because I know how much my husband and family have struggled to watch me really be so poorly, I think it's harder for the person looking after the other person with a brain tumour. Sometimes I think it's been harder on my family than what it actually has been for me. And you know, likewise, and I know we're on the subject of money today. You know me, mum and dad had months and months off while I was in hospital, and they're in a lucky position at the moment where they're really financially stable, and they were able to do that. And I know that's not normal for every family. My heart goes out to you, Rihanna, I think you're wonderful and I've only met you today online. 

RHIANNON: Oh thank you. I agree. Like you say it's, it is temporary, and things, everything changes. Everything can change in an instant. I started just trying to keep in perspective that it's as you're going through it all. You know, it's it's awful, and it does. It feels like it's never going to end, but you'll get to a point where, where it'll sort of settle down. I guess either way, it will settle down and hopefully enjoy, enjoy everything again, get back to some sense of normality. That's how I always look at it might not be the same. It'll be, it'll be less, less intense. 

ANNA: Thank you. Thank you both. That's such a kind of positive outlook to take, I think, and it can be really difficult to have that approach, I know. And so thank you both for sharing it, and I know, hopefully that should be really helpful to some people that are listening, that are really struggling and at some of their lowest points. And just one final question for you both. So The Brain Tumour Charity's new report is going to be presented at Westminster. So I'm just curious to hear what you guys would have to say to government in terms of what you think could and should change in terms of helping people who are diagnosed with illnesses like brain tumour. 

RHIANNON: I believe there should be more financial support for either the patient or the carer. For instance by having a company having a legal requirement to allow paid time off carers and patients, obviously. So that you know in my partner's  case, his work just saying, here's a couple of weeks unpaid, which was not helpful. So, yeah, making sure everyone is fairly, you know that has a fair financial support from the government. Things like, I don't drive, so I would get a taxi to our local hospital, which is 10 pounds each way, which doesn't sound a lot. But if I'm having  on sick pay pay, it's a lot of money if you go there. So I do think that transport for any patients with a brain tumour and, just cancer in general, should for free. I 
don't know how people get to appointments that are potentially, you know, 50 odd miles away to the nearest treatment centre. I just don't know how people do it. So, yeah, that really needs to be looked a just the financial support for patients, carers and transport. 

ANNA: Kimberly, did you have anything to add? 

RHIANNON: Yeah, I think echoing what Rhiannon said there, and, I mean, for me, obviously my experience is different to yours. It's, you know, it's I was the patient. I probably didn't have to really worry about it until I came out of hospital, which was several months after I was diagnosed, I think definitely for me, would be the carer. Even though he was still working, he had to do this. He had to work two jobs because he didn't have an option. But he was still caring for me at the same time. So I don't know, maybe a bit of a look at that and to see how we can rephrase what a carer is. Do they have to be by your bedside every minute of every day? 

ANNA: Yeah, I think I get what you're saying. I think it's kind of to offer more support, or at least make more support visible for the people who are looking after the person who has been diagnosed alongside, obviously, the support that's given to people like yourself. Is that what you were trying to day?

KIMBERLEY: Yes, it is, sorry, that's the brain tumour. 

ANNA: No, you've spoken really well. Thanks so much for coming on and talking to us today. I know it's a tricky subject to talk about, and we really, really appreciate having people who can talk about their real life experiences with us. So thank you so much. 

You're welcome. 

ANNA: In part two of this episode, Chandos is going to speak to Marcus from the Brain Tumour Charity policy and campaigns team about the findings of the report. We'll put details about that in the show notes which will explain how you can access the report online. And if you have any questions, as always, please email podcast@thebraintumourcharity.org.