Financial and other practical issues
People with cancer may experience financial hardship, and may be entitled to one or more government benefits, such as Statutory Sick pay, Employment and Support Allowance (which has replaced Incapacity Benefit), Personal Independence Payment or Attendance Allowance. For more information, see our resources on 'practical matters'.
Some people we interviewed had had an employer who had continued paying their wages or salary while they had treatment, so they hadn’t needed benefits.
David had no financial problems his great employer continued to pay him when he was sick.
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My work were very good, unbelievably good, and as I say as a police officer now I can’t well I work for the Met and I’ve got to give them big praise that from a local level, from my team mates, through to my managers, through to senior management …
So financially you were still being paid and everything?
Being paid, and being very well supported.
Unbelief, and that’s such a difference, up until this day and I’m sure it will continue, I mean that has never been an issue, the welfare side they have been unbelievable, remarkable.
Okay, so you finished your chemotherapy trial?
And then you went back to work?
Yeah I went back to work; I think it was like September 14th I went back to work. Again prior to that through the police I’d had consultation with our occupational health, we’d devised a return to work plan, which involved reduced hours building up to when I go back full time. So initially I think it was only maybe one or two hours a day for the first week and then building up to my return. I can’t remember what it was when I worked full hours.
I’ve not had issues with finance.
Finance, and the money side. I you know, I’ve had a great employer and again I want to reinforce that. That makes it; I would imagine that makes such a big difference. And use your employer. You know a lot of people where I work, frown on occupational health. They see them as being intrusive. And I’ve worked with them and they’ve worked with me and they’ve helped me. So you know, use the support that’s given, if you are working, that’s given to you. And it’s amazing what they can and will help you with.
Michael’s wife was on a ‘very good salary’ so his illness did not have a ‘massive’ financial impact. Vicky’s husband worked for a ‘very understanding’ company. His boss gave him time off to accompany Vicky to all her hospital appointments. Alison’s husband also worked for a ‘brilliant company’ which allowed him to have as much time off as he needed, so her illness had no financial impact on the family either. May, a pensioner, was adamant that her illness had caused no financial problem; she had managed very well because she was ‘thrifty’.
Others were less fortunate. Tony grumbled that he worked for a ‘mean company’ and that he had had to manage on Statutory Sick pay. He knew that this benefit would soon end and he didn’t know whether he was eligible for other benefits.
Tonys company did not pay him while he was sick. He had to manage on Statutory Sick Pay, which...
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And when you became ill you were still working weren’t you?
I was still working, I was,
When did you have to give up work?
I gave up work a day before my operation. Yes, maybe, maybe a couple of days, only a couple of days. I said well you know, I want to be at work. I’ve still got my holidays when I go back.
And have the company been good about paying you?
I don’t get paid no. We’re a mean company. I don’t get paid. I think my sick has stopped now so…
So can you get some benefit from the government?
No I don’t think so. I don’t even get anything now, I think you get sick payment for six months only, and I think I’ve pretty well used them from February, February so we’re going, March, April, May, June, July, oh I might have another month yet, might, I’m not sure.
Do you mind me asking how much you get from the government?
About seventy pounds. Seventy pound a week. I think that’s the sick. Nearly seventy pounds a week.
So that must have been quite difficult? Going from regular pay,
Oh don’t forget I’ve retired, so I get my pension, my old age pension. So I can manage. You know it’s no good worrying about money because that’s the last thing you want to worry about. The thing is you worry about getting well.
You know and let’s see. They’re not going to see you die on the street are they? You know so, yes I mean the wife’s still working, I’ve got my old age pension and my seventy pound, I shall hopefully be back to work, I mean I should be retired so I’ve got to learn to live on my pension and whatever else I’ve got come in, so....
William’s employer ‘had not helped him at all’, and he had had to apply for Disability Living Allowance (replaced by Personal Independence Payments for those aged 16-64). At that time this was a non means tested and tax-free benefit for all children and adults who needed help with personal care or had walking difficulties. William sought advice from Citizens Advice Bureau, who helped him apply for benefits. Others we interviewed asked nurses to help them fill in the long application forms for benefits (also see ‘Other sources of support’).
William asked someone from the Citizens Advice Bureau to fill in the forms for getting the...
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In the end, and then because my bilirubin was going up and my actual red blood count was going down and I was short on vitamin K, he was actually pointing out that if I did have an accident whilst driving, I’d probably bleed to death. So that was the Thursday night conversation with my GP. I went out on the Friday for work, got to lunchtime, and went, “I can’t do this any more.”
Does the company look after you now that you’re ill?
The company looked after me not one bit. They said they’d support me as much as they could, and then the first week I got paid statutory sick pay, and that’s it. And I said, “Well, I’ll come back to work.” And they said, “You’re on chemo?” And I said, “Yes.” They said, “Not until you’ve finished your chemo.” So it’s, now, now, because I’ve had a back-to-work interview, I thought was very funny and, because they’re now worried about my well-being. And I’ve decided that when I finish chemo, so this is a positive, when I finish chemo in February and when the scan comes back clear, I will then take three months myself to get myself back to a f-, level of fitness where I can go back to work. So whether they want me back in March, they’re not getting me, because it’s about me now. I worked weeks beyond where I should have said to myself, “Right, you need to stay at home” and I never got anything from the company. So why should I go back underweight, no energy? So why not take a couple of months off?
So that’s been, has that been very hard financially?
I knew we’d get to finance. It is very hard financially. But I’ve got Disability Living Allowance. And anyone who has the start of pancreatic cancer, I suggest they go in to any of the charities that support cancer, Macmillan Trust will give you financial help, and get as much information as you can. And I just get Disability Living Allowance.
Did anybody help you get that? How did you go about getting that?
My local charity said that they have, Citizens Advice Bureau comes in on a Thursday afternoon, and they said, “If you want, go and see her.” So I booked an appointment, went to see her and sat down and told her my household income. And she said, “Right. You’re entitled to that.”
Did she help you fill the forms in?
Oh, she filled the forms in. I just signed it.
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Lesley and her partner couldn't pay the bills and had a difficult year. A Macmillan nurse helped...
It was at first, when I first got diagnosed. And I could work then until I had the big Whipple’s operation and of course you’re signed off, they tell you three to six months. And that was really, really bad, because we only had my sick pay and my partner at the time, his wages.
And then the credit crunch hit. So he was on shorter hours. It was really bad. Things got left by the wayside, like the council tax. We couldn’t pay that. So that sort of got left and they were getting dribs and drabs, but we were getting threatening letters.
The electric built up, that was another one, you know different little things and it’s only since I’ve got diagnosed as terminal and now I’m signed off work permanently that we’ve got money coming in. It’s sort of a case of you have to be dying before you get anything. We get; you can get a Disability Living Allowance.
Have you got that now?
Yes we get that, so we’ve got that, we’ve got the working tax which we had before,
The working tax credit.
That we get because of my youngest one. We get that. My husband’s off with the stress of it all. But he’s on sick pay. But he’s not too bad but because we’re getting a bit more in and we don’t have to pay rent and council tax. We can catch up with what we missed last year, and that has, that’s virtually paid off. The electric’s paid off.
Have they all been more reasonable because they know of your diagnosis, and your prognosis?
The only one that was a bit funny about it was the water. I virtually said to the man on the phone, if you don’t believe me I’ll give you the phone number, you can phone my doctor. “Oh no, no, it’s not a case of not believing you, it’s just that this must be paid.”
Who helped you get the Disability Living Allowance? Did the…?
It was, no it was someone from, it was the Macmillan’s that pointed me in the direction. They’ve got somebody that comes to them,
And they help to see if you can get benefits. They help you and say, “Oh you might be able to get this, you might be able to get that.” And they tell you which ones to apply for. And some of them, you know, they, “Oh you might not get it, but apply anyway. There’s a chance.”
This is somebody through the Macmillan?
Yes. That er..
They helped you with that.
Yes, they helped us with that and yes, a lot of it’s, of course the housing benefit and council tax benefit. I knew we were entitled to something. But it turned out that we would get the full benefit for them, which was, that was a real help because we can catch up with everything that we missed.
Now we’re finally getting our bills paid.
Good, that’s a bit better.
And its, they’re all nearly paid. It’s a fantastic feeling. But last year was really bad.
When Adrian first became ill his GP thought he had irritable bowel syndrome and she refused to sign him off as sick, which meant he couldn’t claim benefits. This was hard because Adrian was in a lot of pain. After doctors found he had pancreatic cancer he could finally claim Statutory Sick pay and then Employment and Support Allowance. He applied for a Macmillan grant (see ‘Other sources of support’) and also other benefits.
A specialist cancer nurse helped Adrian to claim for a Macmillan grant and for a range of other...
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When, when I first became ill my GP wouldn’t sign me off for IBS. She said nobody gets, goes on the sick for IBS. Of course the, the pain that I was in was actually much more than an IBS patient would have, but she didn’t understand that. The pain that I was in was from my secondaries around my back area. But after the, I had a bleed in my stomach because of the biopsy to check for coeliac disease, they were a bit vigorous in taking a sample, and that made me really very anaemic. And, to the extent that I had to have supplement, iron supplements. And then my GP signed me off no problem, she said, “You, you can’t be expected to work with haemoglobin that low”. So, I was on sick pay, which has a strange name now, employment and support allowance... or some such thing
I think that’s absolutely right.
So I was already on that benefit and, when I was diagnosed obviously the, there’s no question then of me coming off of it. I got a certificate from the doctor, no problem. When I eventually met up with the specialist cancer nurse she went through the entire range of benefits that I may be eligible for, as well as applying for a Macmillan loan, Macmillan grant for me. And so I’m now on the higher rate, I’m on long term rate I think it’s called, of employment and support allowance. I’m also on Disability Living Allowance, both components, mobility component and the other one, which I can’t remember what it’s called. And I also have, because I live alone, another benefit which, the name of which I can’t remember but it’s something a bit obscure like enhanced disability allowance or severe disability allowance or some such thing. So, I’m on higher rate of the, both the Disability Living Allowance. So my benefit, I’m, I’m, my benefits are enough to live on, which if it was, if I didn’t have the disability living components there really wouldn’t be enough.
So that’s the story as far as benefits go. If, if you don’t have a nurse who specialises in it for you then the Macmillan, Macmillan have advisers who work through CAB or a local, your local charity drop-in perhaps. So there’s help available to get your benefits sorted out. Macmillan’s the first stop. Macmillan’s the first stop for an awful lot of things really.
Donna’s husband had given up his job to care for her when she became ill. Steve and his wife both worked overseas in the same organisation, and when he fell ill she had to give up her job too, so their income dropped suddenly. A Macmillan nurse helped him to apply for benefits (see ‘Other sources of support’).
Some people had thought they were not entitled to certain benefits and so hadn’t applied for them.
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Helen could have claimed Disability Living Allowance but she was not allowed to claim...
You mentioned finance. Did, did all this have a big financial impact on the family?
It did to some extent, because your life is different. You, you’re constantly having to travel backwards and forwards between hospitals, so you’ve got your excess of petrol. Your heating costs can go up because when you’re poorly you’re cold and you want to be warm. And for quite a while after the operation I was always cold and I’d want the fire on as well as the central heating, which drove everybody mad. But I had, I just had to be warm. So, so the heating costs have probably gone up a heck of a lot.
Work-wise, because of course I was off sick after my operation, I was off work for about nine months at that time, prior to my operation and then of course post op. So then of course my wage isn’t coming in and I only get sick pay, which doesn’t cover everything. You know, you still have bills to pay, even though you’ve got cancer, your life still goes on to some extent. So it was hard, very hard. My husband had to take control of my side of things really, to try and keep us on track. But it is very difficult.
Is there any way you could get financial help from anybody?
At that time we, we did look into benefits and things. But because my husband earned a certain amount of money, we weren’t entitled to claim things at that time. Although I have since found out that I probably could have claimed Disability Living Allowance. But I was under the impression, somebody had said to me that it was means tested, the Disability Living Allowance. But actually it’s not. Anybody can claim it, for the right reasons obviously. And I probably could have claimed it at that time. But I was under the impression that I couldn’t. So I didn’t, and so I’ve lost it
You can’t get it retrospectively?
Fred lost three months Disability Living Allowance because he didn’t know it existed. He was upset at losing three months of that benefit and also by being in danger of losing his Employment and Support Allowance. People can claim Employment and Support Allowance after Statutory Sick Pay has stopped. To qualify for Employment and Support Allowance, an applicant needs a Work Capability Assessment. Fred had been medically assessed as fit to work. The Maggie’s centre had appealed on his behalf and he was about to go to a tribunal to discuss it.
Worry about his financial situation and having to appeal to keep his Employment and Support...
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We had lots of problems. I lost my job because my salary stopped and I was getting employment support, which was very, very little and I didn’t have enough income. Well, the Maggie Centre helped me there, the welfare rights. Christmas time I was sent, because I had gone on to employment support I was sent to an assessment and they deemed me fit to work. And the Maggie Centre contested it and appealed against it, and I’ve now got to go to a tribunal to discuss whatever this, I don’t know what the outcome will be. But when, when I was recovering, things like that really set me back. It’s one of the things that were very, very negative in my whole experience. I didn’t get any help at all from the Department of Works and Pensions. I think it’s very bad.
Who makes the assessment whether or not you’re fit to work?
It was a trained nurse. And because I was able to get the bus to the centre, although I was in a lot of pain, they, you’re supposed to get 20 points and I didn’t get any points. I told her at the time that I was in pain, and there was never any mention of that in the report that came back to me. So there was a lot of negative stuff there. So you don’t get help there.
The Citizens Advice were very good. Because I didn’t know anywhere to go and I went there, I was advised to go there and they helped me. And they, they’ve just informed me of different things, what, how to go about things. But I feel that there, there should be help for, for people that, I mean I’ve worked for fifty-nine years and I feel that in your time of need you don’t have any help.
So have your government benefits been cut off?
Yes, the, I was on Disability Allowance, but it was three months before I went on to that because I wasn’t aware. And when I was advised to go on that, they, they wrote the letter to tell me that I had appealed, or I had enquired three months too late. I’ve lost all that benefit.
Ann said her Macmillan nurse had pointed out that she was entitled to immediate benefits such as Attendance Allowance and a blue badge for the car; benefits which might have been delayed many months for someone who did not have a terminal illness.
Illness can add to people’s outgoings too. Helen, for example, explained that after her operation she needed the fire on all day as well as the central heating, which put up the cost of heating the house. Helen had claimed only Statutory Sick pay, which is usually paid during the first 28 weeks of sickness (except for the first 3 days) to people who earn more than the minimum earnings threshold (£116 per week in 2018). People who are not eligible for Statutory Sick Pay may be able to claim Employment and Support Allowance. The UK governments benefits system is constantly changing, please see GOV.UK for more information.
Bob pointed out that ill health prevented him from doing jobs around the house, such as decorating and electrical repairs, so he had had to employ someone to do things that he would have done himself when well.
Bob was using his savings to cover the extra costs associated with ill health. He said, Its...
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Would you mind just summarising, you said the Maggie’s centre were wonderful.
What was the main thing that they helped you with? Was it the financial situations?
Yes and they told me I would be, did you know that you can, you can claim for this, and you can claim for that. I put in claims for it, I haven’t got anything yet. But it’s been, but they said you should have done this three years ago, it’s things that you’re entitled to that you’ve not…, but I always assumed that they were means tested, you know that’s always been at the back of my mind to think oh well you don’t stand a chance of getting anything you know, but apparently they’re not. Some of them are, you know, it hasn’t, on the financial side it amazes me how much, how much more expensive it is when you’re sick. And you think “Oh well you won’t have the, you won’t have the thing,” but it’s its amazing.
You know, you know, this is a large place and this, another place over the road as well, so they’ve all got to be, they’ve all got to be paid for, and the rates on them, are just really expensive. So but I think one of, one of the, one of the major things, what’s the name, is just how expensive it is when you’re not working and when you’re sick, to keep up with the transport costs and all the bits and pieces, cars, driving around, getting people to, what’s the name, and getting taxis sometimes when, when, when you need to. Waiting around in hospitals, and etcetera, just how expensive it is, Being unwell is more expensive than being sort of working all day because you spend, you spend less [when working].
Because you can’t sit around the house all day, and there’s only, and because it, your energy levels drop you, you’ve got to now, I mean I’ve just paid what four and a half thousand pounds to have the place painted. Okay, now I would have done that myself, three years ago. I find that I do one, half a wall, and I’m exhausted. It’s you know, it’s just the way, the way the thing is you know. I guess, with the chemotherapy etcetera, it, you don’t seem to get your, the energy levels seem to drop.
And then silly little things, you have to pay for somebody else to come in and do the electrics, somebody to come in and do decorating. And you can’t, you can’t do stuff that you’ve always been able to do. You know.
The cost of going to and from hospital for treatment was another added expense. Petrol was expensive and sometimes people needed a taxi. Parking at the hospital incurred extra costs too, unless people had a disabled badge and could find a parking place for disabled people. Some people had applied for a disabled badge for parking (Blue Badge Scheme), and William was pleased because the government had paid his road tax.
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William was receiving the higher level of Disability Living Allowance so the government very...
And, you know, I’ve got, because I can’t walk very far I’ve got a disabled badge, which is brilliant because I can’t walk that far and I tire out.
That’s for the car?
For the car. For the, because I’ve got Higher, Higher Level Disability Living Allowance, the government will pay for the Road Fund Licence. Well, that was £100, brilliant, just before Christmas. “Thank you.” You know, I’m looking forward to handing it back and saying, “I don’t need it.” So there’s a look forward.
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Rory got a Blue Badge for parking. Her insurers told her that she could remain insured if she...
Well I did, I rang my car insurance people up and said, “I'm on all these drugs” and they said, “As long as you tell us what you’re on, we’re quite happy to insure you. You’ve never had an accident”.
And they haven’t put my premium up. I have applied for a blue badge and I did get one. I feel a terrible fraud with it.
But I do get very breathless. And ..
Did, how did you apply for your blue badge? Did you have to fill in lots of forms?
I, no, well, yes I did have to fill in a form [coughs] excuse me but I had a Macmillan nurse come to see me ..
And she said, “I, I’ll come to see you while you’re really well” and I haven’t seen her since. She said, “I won’t bother you unless you want me.”
I’ve got her number if I need her. But she did actually fill the form in for me and she sent it off for me.
So the Macmillan nurse helped you get the blue badge for the car?
Yes, she did. Yes. Yes.
Do you have to pay for parking at the hospital?
Oh yes, you still have to pay, well if you manage to get a, disabled badge holder place you don’t have to pay but on a Monday they have a huge travelling unit which comes to the hospital which takes up all the, the disabled parking spaces. So you have to go into the pay park.
You have to pay. Even if you’ve got a badge?
And it’s very expensive. Yes. I think it is slightly reduced for us, but I don’t think I pay the full whack.
Parking space at the hospital was often difficult to find. Hamish complained that he had to allow at least an extra half an hour to find a parking space. Bob noted that one week he had been to the hospital five times for treatment, a 50 mile round trip each day. People on low incomes can sometimes reclaim the cost of transport to and from hospital.
Ben didn’t have a car so he used hospital transport. Hospital transport provides a way for patients who find it hard to use other forms of transport to get to and from their hospital appointments. The transport is usually authorised by a person’s own doctor, not by Trust staff, but Ben said that his trials nurse booked his transport. Any further follow-up visits requiring transport can be authorised by the doctor or nurse in the hospital clinic.
Higher travel insurance was another problem for many of the people we interviewed. As soon as people told their insurance company that they had pancreatic cancer, or if they mentioned the word ‘terminal’, their holiday insurance premiums shot up.
When Anthonys wife was ill they found that travel insurance had become very expensive. When they...
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On that, the bit that, where it always hit Martine, and we found very difficult was travel insurance. Because you do want to travel, specially if you get a terminal, a diagnosis like that and you want to go to other countries, either to see people or do a visit, to see somewhere you’ve never seen before. But you’ve been warned, the moment you apply for this, for any travel insurance, either they will refuse it straightaway when you say pancreatic cancer, or say, “Oh yes we can do that, but we need to ask you a little questionnaire.” And the questions are intrusive, like, “Is your, has your cancer been diagnosed as terminal?” And Martine, she never wanted that word. She said, “I don’t want to know that. That’s precisely what I want to block out.”, and that’s precisely what the insurance company insisted on getting an answer to. And at that point I would, or usually it was on the phone, I would say, “Can I answer on behalf of my wife?” And then they’d talk to her and say, “Is it alright if your husband answers all these questions?” And she would leave the room. And then I would do the rest of the questionnaire to, to get the insurance, because we did want to travel, and we needed the insurance in case.
And was it very expensive?
Not hugely, well we eventually took the decision not to insure for the cancer. Some of the insurance companies will say, “We will give you insurance excluding your present condition”. And because we were always going to France, and we were with either friends or family we felt confident enough to say, if suddenly she got worse we could bring her back, or we knew local people enough. So it wasn’t hugely expensive because we excluded the, the cancer from the, but if you include it, its, it was going to be very expensive indeed.
Some respondents suggested that people can still find ‘reasonable’ insurance if they ‘look around’. John (Interview 40) said that his bank had always covered his insurance. Richard (Interview 22) decided to take out insurance which would cover everything except problems associated with cancer. Dorothy obtained a copy of a letter that her consultant wrote to her GP and used it to obtain insurance cover that was only a ‘little bit dearer’ than ordinary insurance. She stressed that the letter did not mention a ‘terminal prognosis’. Rory decided to go to Europe without insurance. She explained that if she became ill she would use her E111, go to a local hospital and then fly home as quickly as possible. The E111 form is no longer valid. The new, free European Health Insurance Card (EHIC card), also called the EU Medical Card, is available via the NHS. People can apply for one online or visit their local post office.
Macmillan and Maggie’s centres have lists of insurance companies specialising in this area.
Last reviewed September 2018.
Last updated September 2018.