Money Box Live: Navigating a Terminal Illness

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Hello, this week on the Moneybox Live podcast, we're looking at a topic that's very difficult, but very important. What happens to your finances when the worst happens? How do you plan for your financial future when you've been diagnosed with a life limiting or terminal illness? I live every month in my overdraft. I'm in debt with my gas and electric. So I try not to worry, but I don't have enough money at the end of the month.

We'll hear more from Debbie later in the podcast. So how do you manage the money when the maths has so abruptly and upsettingly changed? That's what we're asking today. And it's something MPs have been asking too. The all-party parliamentary group for hospice and end-of-life care has found that people can face real hardship because they often have extra costs combined with a loss of earnings.

But let's start the programme by speaking to Nathaniel, a music teacher who was diagnosed with incurable bowel cancer three years ago at the age of just 36. Nathaniel, thanks so much for being with us. Thank you for having me on. Now, you appeared on our Saturday programme in the past, but just bring us up to date. How are you doing? Well, I suppose I've been quite fortunate since diagnosis in the autumn of 2022.

But a drop in health really coincided with being given, unfortunately, less than a year to live back in February. that draws a real financial link because it's essentially a bureaucratic process. So once determined there's less than a year, that unlocks the special rules form, which enables access to things like PIP payments and universal credit in a slightly different way.

And I mean, now it's honestly a case of taking every day as it comes. And with all that to worry about, I've also been told that I'd do well to make it till perhaps Christmas. So, well, let's see. It's a bit of a ride. It's a bit of a ride. Thank you so much for being with us and talking to us about it. It must be very, very complicated feelings to be told that sort of less than 12 months likelihood because that's obviously...

must be extremely upsetting. But also, as you say, that unlocks a lot of financial support. I mean, it does. I mean, try getting your head firstly around this could be my very last 17th of September. So, I mean, I think maybe I'm one of the few people who is... relatively singing the praises of the Department of Work and Pensions and the PIP benefit, because once I was made aware for, in fact, a benefits advisor for Macmillan Cancer Support, that...

there was a different way to get to access PIP. It took, believe it or not, 10 working days for there to be an assessment and for the first weekly payments. to be in my bank account. And it's not a lot of money, but just that slight safety net and security of a regular income was just brilliant because... It possibly goes without saying, but I'll say it anyway, if that's okay, that my lifetime earning potential has gone through the floor. I'm not well enough to work. I live on my own.

And there isn't even anyone who can support me, really. So it's just a case of getting by on what finances. Now, you've talked about PIP there. That's personal independence payment. What kind of things do you have to pay for because of the stage of your illness that you're at? Well, I'm... I'm coming towards what may well be regular carer visits, maybe even full-time care, which I'd have to fund myself. We're talking installed devices like hospital bed at home. Undergoing, for example, chemo.

it makes you really cold. So my heating bills have gone up tremendously. travel to appointments I mean again these might not sound like huge considerations but they really do add up when just well trying to be as

as dignified and financially independent as I can be. And there must be so many things going through your mind because of your diagnosis. In a way, money must be just the last thing you want to have to think about. Well, as I think I heard from from the top of the show everyone says don't worry about money live your life and i've i've done my best i've tried to but if um with the best way in the world if i'm not going to worry about it no one else is and um

I know that people of working age are more likely to die in poverty than pensioners with eternal illness. And that's partly because there's very little safety net. And unfortunately, with everything else, we're coming to terms with... The fact that I'm dying and maybe I'm trying to see my family those last few times. I've got to worry about money as well. The bills haven't gone away.

Nathaniel, I'm so grateful you've joined us to talk about this. And stay with us, please, because there's lots of other parts of this programme. It'd be very, very good to bring your experience in on. But listening to Nathaniel and also joining me throughout the programme today are our two experts, Jamie Thunder.

Senior Policy Manager for Financial Security at the End of Life charity, Marie Curie. And Nina Sparing, partner at Price Slater Gorn Solicitors. And Nina, you're also a member of STEP, the Society of Trust and Estate Practitioners, which specialises in estates and wills. Lots to talk about. Hello. Thank you both for being with us. Thank you for having me. Nina.

A terminal diagnosis, we heard it there from Nathaniel, it completely rewrites the financial future. And instead of worrying you're not saving enough for your pension, you have to start worrying about whether you have enough to help you manage these months of illness. Yes, of course. It's a very, very difficult time. That's why I would always say you can never start too early in terms of planning.

putting things into place like lasting powers of attorney to help somebody deal with your property and finances on your behalf. And we'll talk about some of those processes later on. But Jamie, you actually wrote the report for that parliamentary group I mentioned.

What are the key findings of your inquiry when it comes to the financial impact of a terminal diagnosis? Thanks Felicity. The key things that we found... actually are things that Nathaniel's mentioned so well just now as well. We particularly found that after a terminal diagnosis... costs can really increase, in particular energy costs, at exactly the time that particularly working age people can see quite a big reduction.

in income because they may have to stop working and so might their partner in order to care for them. And that creates a sort of perfect storm of financial difficulty at the worst possible time. And Nathaniel was sort of touching on the idea that working age people are most affected.

They are. They are more likely to die in poverty than pension age people. And a large part of that is the way that the benefit system works. The benefit system, if you're over state pension age, is more generous to the tune of several hundred pounds a month. than if you're of working age with a...

Well, the government told us it values the insights and perspectives provided by your report, and it noted the many recommendations. But it also said there are special rules in place to allow people at the end of their life the dignity they deserve, including things like... fast-tracked access to benefits so people can get the support they need quickly. What sort of support is currently available? So the special rules are a really important part of that support. That's absolutely right.

What that means is that if a clinician says that they would not be surprised if you died within the next 12 months of your condition. that you should get fast-track access to personal independence payment and also to the health and disability related part of universal credit. That's really, really valuable because it means that it's guaranteed, it's quick, and you're not going through the regular...

quite lengthy, quite intrusive and quite uncertain process for those benefits. But even with those in place, what we find is that the money still often does not add up. So you don't think that that's enough to support people in this situation? No, it's a very helpful part of the system as it stands, but ultimately it's not enough to stop people having real financial difficulty at the end of life.

Well, there is other help out there. Carol has emailed, in fact. She says, I was diagnosed with bone liver lung cancer aged 75 this May. Macmillan's benefits advisor helped me fill in and they sent off for me the relevant forms for attendance allowance.

and blue badge parking. It took less than a fortnight. I recommend people try to let someone official do this for them. Nathaniel, I suppose there can just inevitably be a lot of faff in applying for support, in dealing with admin. What have you found? I've certainly found a lot of faff. But just as much as it's taking quite a long time to go through bureaucratic processes, like, for example, Blue Badge support comes through the council, or there might be a different arm of TfL or whatever.

and I'm grateful for all of this, but it's... It's a lot to get your head around. And I think it says a lot that there are dedicated benefits advisors provided by charities like Marie Curie who can help people around this stuff because it isn't at all straightforward. And it's just knowing... you qualify um in my case uh it's it's more

I'm sick rather than disabled primarily, I suppose. And a lot of these are disability benefits. So just knowing that I'm entitled to them is a huge first step, in fact. Yeah, it's that knowing, isn't it? Let's hear from Debbie now.

and she was working as a hairdresser when she was diagnosed with motor neurone disease. I'm struggling but I'm positive every single day. And that's so important, isn't it? I want to talk to you about your finances and kind of how you're coping financially with this illness. You stopped work.

And your relationship broke down. Yes, yes. After diagnosis, I had to give up being a hairdresser because I couldn't hold the hairdryer, but also my... relationship did fail so it was one big hit on financial reasons due to not having his wage coming in or my own wage So it was a really difficult time for me. I'm living just about living. People ask me about bucket lists. I don't have the money to do a bucket list. I can't afford holidays.

I live every month in my overdraft. I'm in debt with my gas and electric. So I try not to worry, but I don't have enough money at the end of the month. What kind of help or support is out there? They've got a helpline and they ran me back and guided me through. But they also do a financial support grant. So I have applied and received a copy. Now you actually run a Facebook support group. What kind of financial questions are people bringing up on there?

pensions is hard and complicated and they draw it out so long it's like they don't want to pay out so that's added stress for us with MND just trying to access something that we paid into. Well, huge thanks to Debbie for speaking to me. And by the way, her Facebook support group is for women with motor neurone disease and it's called MND Queens. Jamie, Debbie mentioned the support she had from an MND charity.

Does the help that is available, does it mostly come from charities? There is a lot of support that comes from charities, absolutely. But part of the risk with that is that it only supports people with... certain conditions and of course it's not guaranteed. It's dependent on those charities continuing to have the funds to continue to offer that support which is why I think one thing that we need is a much better safety net provided by the government.

so that those additional bits of support are there for top-ups rather than just helping people to get by. So perhaps there's an issue that it's the illnesses that are more in the public... eye and mind that maybe get more financial support and therefore can provide more financial support. That can absolutely be part of it or just more common illnesses. You can obviously have some very sort of unusual or rare conditions that... simply may not be common enough to sustain a charity.

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Nina, let's talk about that question of pensions. When is someone with a terminal illness actually allowed to access their pension early to get that cash? Of course, yes. So it depends on the pension. So for private or personal pensions, they can be used to pay for care. You can typically take... 25% of your pension pot is a tax-free lump sum, but there are age restrictions as to when you can access it.

You can access early in specific circumstances, which do include ill health. But I would always recommend getting financial advice from a financial advisor before you consider accessing the pension. And there are different rules in place. in relation to company or workplace pensions, they tend to be a bit more fixed or structured. So getting some specific advice for your circumstances. Jamie, you looked at the issue of pensions, didn't you, in your report?

We particularly looked at the issue of the state pension, which unlike... Workplace pensions, I appreciate the rules there are still complicated, but there can be ways to access that early. There's no way to access the state pension early as it stands, even though you might have paid in national insurance contributions to support today's pensioners for...

years or even decades. And that is part of what drives this disparity between working age and pension age people with terminal illness. And we think that... Current Pensions Commission that's ongoing at the moment has a real golden opportunity to look at how that access could be expanded to the relatively small number of terminally ill people of working age who it would really, really benefit as well.

Nathaniel, Nina's talking about certain conditions, certain diagnoses, being able to access your pension early. This is something you've found tricky to do. Well, again, it's quite a laborious process. And I'm incredibly fortunate having heard some of that testimony just now. But I fear that access to my pension...

workplace pension being in the public sector will happen, but how long will it take? Genuinely, are we talking about something like an access lump sum or is that going to be a deaf and service payment? I'm not really sure how long these things last. Is it something you've been looking into? Have you been asking for access to this money?

Well, I'm quite stubborn, so I've only just taken the decision to retire early because I always feel like there might be another comeback in me. But with a heavy heart, I'm beginning that process. Wish me luck, I suppose. I definitely wish you luck. I should say as well, if you're affected by any of these issues, anything that we're talking about today, then details of advice and support with end of life care are available at bbc.co.uk forward slash.

action line. Right, Aileen has been in touch with this message. My brother-in-law died in July. He was diagnosed with stage four pancreatic cancer in May. He wanted to get his affairs in order. Firstly, power of attorney. Secondly, will. Thirdly, finances. My advice is to prepare now. Eileen, thank you so much for that. Nina, is Eileen's checklist right for everybody?

Yes, always, always start early, start the conversations early, involve loved ones, let them know what your wishes are and then start the process, which might include speaking to health professionals, drawing up an advanced care plan, for example. and making those documents legally binding as well. Now, we've previously done an entire programme on power of attorney. It's a very, very big topic. But can you explain why somebody with a diagnosis might want to put that in place?

So a power of attorney gives people the authority to be able to make decisions on your behalf. And you can have one in relation to health and welfare and one in relation to property and finances. You can include preferences and instructions.

And perhaps you don't feel that you're able to make those decisions. Those people can make them on your behalf. And they don't have to go together, do they? You could choose one person for health and welfare and one person for financial. Yes, you can have different attorneys for both. You can have more than one attorney.

and you can also have a separate power of attorney deed in relation to businesses if you've got a business as well because you may have different wishes in that regard. Okay, if somebody with a diagnosis feels well enough to think about straightening out their affairs... What kinds of things can they do then? Well, they can look at their estate as a whole. I don't believe there is any one size fits all because you hear people talking about giving away property or changing their ownership.

dependent on the family dynamic and everybody's individual assets and also tax implications in doing things as well. So it's really important to take advice before you start doing anything like that.

OK, well, Lynn has emailed on the issue of... finding the energy to deal with some of these financial issues. She was diagnosed with ovarian cancer and she was told she had weeks left, but then she survived after an operation. She says, the problem was I could not... with any financial matters. My brain felt like treacle. I had to go to the bank to make a joint account with my daughter.

This was such a mission physically and mentally. Lynne, thank you so much for your email, for sharing that. Nathaniel, it does sound exhausting, doesn't it? Have banks been understanding when you've spoken to them? Well... Just about. So for example, I've recently arranged a mortgage holiday. Having been pretty happy to, just before the age of 40, gotten myself on the property ladder, if you like. But it's really variable. And of course, it's at the bank's discretion.

or anything that's provided there. So people are lovely, but not necessarily every institution I found. Jamie, what have you found as part of your report? It can be exhausting when you're in good health, sometimes dealing with all that admin. And if you're also coping with a diagnosis and you're in poor health.

really really difficult. It really can be difficult and that's partly why getting advice from a charity or a specialist advisor based in a hospice for example can be really important. It's also why the special rules do matter because it is a much simpler process than the regular process of applying for personal independence, payment, universal credit, but also attendance allowance for people over pension age. And should banks be...

treating people more carefully, being more aware of the difficulties that they might face with this kind of diagnosis? Yes, absolutely. I think it's always difficult to sort of set hard and fast rules for... exactly what should happen, but absolutely any organisation dealing with someone with a terminal illness should recognise that they're in a very difficult, vulnerable

position quite possibly financially, but also just more generally. If you think about everything else that goes with a terminal diagnosis, you need as much support as you can get.

Thank you very much. Right, let's end the programme with a fundraising story. This is David from South Shields, although he's currently on holiday in Cornwall. And I spoke to him and his granddaughter, Katie. Now, he has terminal bone cancer and Katie has... been raising money to send him on the trip of a lifetime i'm doing all right i don't feel ill at all at the moment i feel tired quite a lot but i'm on hormone treatment and that's one of the side effects apparently fatigue

What's improved things is I bought a mobility scooter. I can't go any great distance walking because the pains are getting me and my hips and my feet. So I bought the mobility scooter, my wife. I've been suggesting that for quite some time, but I'd stop with no fool I am. I kept saying, I'm not ready yet. And Katie, you want your granddad to have a much more epic trip than his current Cornwall holiday. Tell me what you're fundraising for.

So my granddad's lifelong dream is to go to the Calgary Stampede in Canada, which is kind of a big rodeo-based event. I think it's all for about a week or two weeks. David, did you watch a lot of cowboy movies as a kid? Always, right from being old enough to, well, we didn't have a television until I was about 10, 11 years old. I used to read, obviously, books and comics and God knows what.

When we got the television, Cowboy programmes was my favourite. Casey, so your grandad got this very upsetting diagnosis and you decided that you wanted to make this dream come true. Tell me about the fundraising you're doing and what kind of response you've had. It's been a really overwhelming response, to be honest. It really does restore your faith in humanity because it's complete strangers who you've never met, you've never spoken to.

probably from across the country, across the world. And there's some quite sizable donations as well. So it does really just lift your spirits, especially when there's been such a... obviously horrible diagnosis in the family it kind of gives everyone that little bit of a boost the need to stay positive and just kind of get on with things myself and the entire family

Just want to make sure that we can do everything that we can possibly do to get him there because he's never expected anything of anyone. He's never asked for anything of anyone and it's the one thing he wants to do and I think he deserves to do it.

David, how does it feel knowing your granddaughter wants to make this happen and that all these people, including strangers, have supported it? Oh, it makes me feel wonderful, especially Katie. She's an absolute star. She really is. And as far as other people are concerned... Thank you very much, is all I can say. It's restored my faith in humanity.

I hope that he gets in touch and lets us know that he's made it to that event. David also wanted me to name check his wife, Betty Jean, who first launched that fundraiser. Nathaniel, fundraising is something that comes up a lot in this kind of area. You did some incredible fundraising at the start of your diagnosis, didn't you? Raising money for Macmillan Cancer Support. What did you do? That story just fills my heart with joy.

I suppose I thought right from the outset that I'm probably going to need quite a lot of these services that charities provide. So why not try and give something, well... rather than give something back give something forward so um we're talking uh i I ran the London Marathon whilst playing the trombone at the same time. That got some attention. And I suppose also quite notably walked from John O'Groats to Land's End in two months as recently as last summer.

But I've had to take the scale of ambition back, but not necessarily with the success of fundraising, because I think it's all about telling a story. And we're talking about small local events in the community. And I'm... Likewise, I've been bowled over by just, I don't know, I conduct a brass band and we've put on a couple of concerts and maybe taking home a couple of thousand pounds of time for the charity. Is it quite empowering?

Well, it just, I don't know, it does my heart good to know that we're doing something. But as I've gotten more and more ill and a good day now is maybe getting out to the park for a short walk.

um i've just had to scale that back a bit but that doesn't mean that it isn't just also valuable to um yeah to give something back to charities that are just working so hard for for people like me financially it's just just one aspect but i'm really glad we've touched on that today because it's it's incredibly important

Jamie, for people who are listening, where do you go when you first receive this kind of diagnosis? Where can you find out what kind of benefit support or other financial support might be available to you? So Marie Curie has a whole host of information on its website, MarieCurie.org.uk. And we also have a support line that can provide practical and emotional support on all aspects of...

a terminal diagnosis, both for the person themselves, but also for friends and family. And Nathaniel, any last thoughts for anyone listening who might be where you were three years ago, just at the start of this? Well, the clues is true. come out of that room a completely different person but I wasn't quite aware how much support there is from well for example from the charity sector that hopefully will come more and more

from government and the civil service. And I'm just so glad that this report is out. And I really hope that it will be acted on for dying people. like me, we really appreciate it. Thank you so much. Well, that's all we've got time for in today's Moneybox Live podcast. Huge thanks to everybody who shared their stories. Thank you, of course, to Nathaniel, who stayed with us throughout the whole programme, and to my experts, Nina Sparing, partner at Price Slater.

If there's a topic that you want us to dig into for a Moneybox Live or for Paul and the team to investigate, then here's Katie, the fundraising granddaughter, to tell you how. If you want Moneybox Live to look at a story or even appear on the programme like my grandad and I did, then get in touch. You can email moneybox at bbc.co.uk or send the team a message or voice note on WhatsApp. The number is 033-06-783-183

They really do read and listen to every message. We really do. Thanks, Katie. In this podcast, the producer was James Graham, the studio manager, Toby James, and the production coordinator, Ima Devlin. Our editor is Jess Quayle, I'm Felicity Hanna and this was a BBC News Money and Work production for BBC Sounds. I'm Rory Stewart and I want to talk about heroes.

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