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Lymphoma

Finances

In the UK, people who are employed but too ill to work are entitled to basic statutory sick pay for up to 28 weeks (for current rates see GOV.UK). These interviews were collected before the recent changes to the benefit system, so in some cases talk about Incapacity Benefit and Disability Living Allowance, which have now been replaced by Employment and Support Allowance and Personal Independence Payment. The financial impacts and concerns are still valid today. 

Most people we spoke to who were working had needed some time off while they were treated (see ‘Impact on work and other daily activities’) and those who were employed received sick pay. Some employers have their own sick pay scheme and several people said they had been paid their full salary for the first six months, and some had received half their salary for an additional period. Usually a person had to have been working for the same company for at least two years to be entitled to more than 28 weeks' cover. A woman who had been on unpaid maternity leave when her lymphoma was diagnosed was ineligible for statutory sick pay. Those who remained off sick for long periods stopped getting sick pay and had to rely on other state benefits, health insurance policies, their savings or their spouse’s income. Some retired on health grounds so received an occupational pension. Self-employed people are not eligible for statutory sick pay but may be able to claim other state benefits.

 

Was paid her full salary for her first period of sick leave but changed jobs and the second time...

Was paid her full salary for her first period of sick leave but changed jobs and the second time...

Age at interview: 35
Sex: Female
Age at diagnosis: 31
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How did it work out financially? Did you lose any pay?

Yes. Not the first time round. The first time round I had sick pay for the full, the whole time I was off. The second time round because I had been in the job less than two years my sick pay wasn't nearly as good. And yeah, I went onto statutory sick pay after I'd been off sick for three months. Accidentally I have an insurance policy, one of those that was sold when we got the mortgage. And it was free for the first six months and then you started paying for it and we just didn't stop. We just let the payments go out so it was kind of accidental, but thank goodness I did. Again I'm really lucky and I keep saying that and I am, my parents can afford to help me if I'm not earning. And I have a partner, a husband who is healthy and can earn and I know that, I know very well that I'm in a very fortunate position. Because yeah, the money ran out after three months on this occasion. 

A general practitioner was paid his basic salary by his practice for six months but lost his usual additional income from out-of-hours work so used his savings to make up the difference. An engineering contractor lost his income when he couldn’t work so lived entirely off his savings. A woman sold her business and lived off her husband’s income for the duration of her treatment. A writer said he continued to earn money during his illness from his published work, and another said her income dropped substantially but she had just enough to pay her bills.

 

Sold his surveying business but continued to receive part of the fees from his old clients and...

Sold his surveying business but continued to receive part of the fees from his old clients and...

Age at interview: 65
Sex: Male
Age at diagnosis: 52
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You decided you had to give up work'

Mm.

'through your illness and you were self employed?

Yeah.

So were there financial implications for you?

Yes we, as I say, over the first three years of stopping work, the firm I had, in inverted commas, sold my business to, they took over my clients and I got a percentage of the fees that they earned from those clients, which frankly helped pay off the overdraft. And in the very early days of going self-employed my wife had said, 'Right, if you're going self-employed the time is going to come, or may come, when you might be ill and not able to work and you've got employees to pay and you've got other things to pay, mortgages and stuff like that. Do you think you ought to take a permanent health insurance policy?' I had a brother who was involved in insurance and he got me a very good one. It didn't crack in for a year so we had a year when we just lived on my wife's money, but after the year it gave me, after some considerable negotiation, it gave me a reasonable income so that we weren't totally reliant on her money. But unfortunately it only lasted until I was sixty-five so it has now stopped, and now we shall find out whether the investment we made in the small property in Watford and then sold and have reinvested elsewhere, whether that's going to give us sufficient income to live on.

And you must've had some pension schemes?

No.

No?

Well by the time I became self-employed and got to the stage where I actually could put some money by, I was beginning to get to the stage where in fact there wasn't any money to put by because I wasn't able to work the way I wanted to work.  

Several people, both employed and self-employed, were glad they had taken out sickness insurance to provide for them if they got ill; this had helped offset the shortfall from loss of earnings. One man said he would have been in trouble without his insurance cover as he had no financial reserves. A woman had used her insurance money to pay for organic food, massages which lifted her spirits, broadband internet access for finding information about her illness, and a new television and sofa because she knew she would be spending a lot of time watching TV.

 

Went down to half pay after six months off sick but she didn't worry about paying the mortgage...

Went down to half pay after six months off sick but she didn't worry about paying the mortgage...

Age at interview: 27
Sex: Female
Age at diagnosis: 25
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So were there any financial implications? Did you lose income?

Yeah. I was very lucky with our sick pay scheme with my job. I'd managed to keep my full-time salary for six months. I was off work for ten months altogether so did lose some money towards the end, which'

What happened after the six months? Did you go to half pay or no pay?

Half pay for, I would have been entitled to half pay for another six months. But living in the south-east of England your living costs are so high you naturally have concerns about how you're going to pay your mortgage and all of your bills and just keep yourself afloat. But I had been quite lucky because I'd had a critical illness insurance policy. Insurance companies being as they are it took a little while to get all that sorted out but that was such a weight off my mind knowing that the financial side wasn't going to be an issue. It took about six months to sort all of that out but it was so good knowing that you wouldn't have to worry about whether you could pay your mortgage.

Employed people whose sick leave continued beyond the 28 week limit for statutory sick pay could claim Incapacity Benefit now called Employment and Support Allowance*. Self-employed people who have paid appropriate National Insurance contributions can also claim this. Those whose illness affected their mobility or needed help in looking after themselves could claim Disability Living Allowance (now replaced by Personal Independence Payment). People who are terminally ill can apply for both Employment and Support allowance and Personal Independence Payment under special rules which mean their claim will be dealt with quickly and they may receive a higher rate of benefit. People over 65 who need help in looking after themselves can claim Attendance Allowance. An unemployed man with a wife and daughter to support said his social worker had claimed Disability Living Allowance for him with the help of a letter from his GP but the application was rejected. His Macmillan nurse successfully reapplied and he received backdated payments. Many people found out about their entitlement to state benefits from friends, social workers or Macmillan nurses, who often helped with the application forms. Some people found they were entitled to a disabled parking permit. A woman said she didn’t find out about her entitlements until she was nearly ready to return to work, so didn’t claim. For more information about state benefits contact the Macmillan Benefits Helpline (freephone 0800 138 6568), GOV.UK the Department for Work and Pensions or DSS Benefit Enquiry Line- freephone 0800 882 200 or Citizen's Advice Bureau.

 

When his sick pay stopped he received Incapacity Benefit and Disability Living Allowance at the...

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When his sick pay stopped he received Incapacity Benefit and Disability Living Allowance at the...

Age at interview: 44
Sex: Male
Age at diagnosis: 33
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What about financially though, have you continued to be paid?

Obviously being off that time now, the money that obviously my salary has stopped now so I'm just getting now like Disability Living Allowance. The reason, how it came about is, I'm actually classed as having a terminal illness because obviously there's not a cure for it and a couple of times I've, well when it came back the second time it was quite, I don't think they was, they was saying there wasn't a lot more they could do for me so possibly didn't have long. So I then was able to get the higher rate Disability Living Allowance and the mobility part. And then obviously once my wages stopped, once my company stopped paying me I then would be able to qualify for Incapacity Benefit. So that's basically what I'm getting now, the higher rate Disability Living Allowance and all the components that go with it, the care side, the mobility side and the Incapacity Benefit.

How did you find out about those benefits?

Just basically through word of mouth really. You see no one really came forward with all this, we didn't really know what we was entitled to, but obviously the personnel department then put me onto Incapacity Benefit and I think my local hospital, in the treatment room they then put me onto, you know, and also my cancer counsellor she sorted all that out for me as well, she was really good, so she put me onto like the Disability Living Allowance and got me the higher rate. So yeah there was people there to help.

Good and so you've been claiming all these benefits, is it enough?

Well obviously my wife gets, with the two children she obviously gets the Child Tax Credits and she's working full-time so with that and my benefit money that I'm getting yes, we're OK at the moment. And we're also getting help with, because I work for the, am I allowed to say the insurance company?

Don't give its name.

Right, I work for an insurance company and because I've been there for quite a number of years there was an insurance charity that came out to see me and they offered to help us financially as well. So I'm also getting help with them, so they're giving us quite a substantial amount a month as well, so we're getting help, so yeah we're OK with that.
 

 

His Incapacity Benefit and Disability Living Allowance paid for a carer, gardener and cleaner....

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His Incapacity Benefit and Disability Living Allowance paid for a carer, gardener and cleaner....

Age at interview: 53
Sex: Male
Age at diagnosis: 51
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Were you eligible to claim any state benefits when your pay stopped?

Yeah what I did was, well initially I've been able to claim Incapacity Benefit and also I did get a Disability Benefit and I had to, I mean I'm not really one for claming benefits to be honest but I was, but necessity was that I needed to. And the Disability Benefit I use that money to pay for my carer so that was good that I had that, and also I sort of used any surplus I would pay for a gardener and a cleaner basically. And the Incapacity Benefit I've been receiving, which has been really good as well but now I've gone onto pension, that needs, I need to sort of, there'll be adjustments for that so I probably may not even qualify for Incapacity. 

But I mean what happened was as I was stopped sick pay at work then I got Incapacity Benefit. But now I don't, actually I don't get Disability Benefit because in the June of last year, after a year of disability I was up for review and I did submit an application, in fact I actually appealed as well but my application was rejected and although I don't, I really think I wasn't much better after twelve months than I was when I first applied, but the thing was to be honest again I'm saying this I'm not one for benefit claims and I thought, 'Well I just want to move on and try and get myself moving more', so I haven't pursued that and I shall manage on my own because I feel like I want to do that.

You weren't offered a carer on the state then, you had to get one privately? 

Well that's right. Initially when I came out of hospital I had a couple of weeks free but because I did have, because of my income I didn't qualify for a free carer. So, but then as I say fortunately I got Disability Allowance and as far as I was concerned I wasn't mad keen to claim it but it was very good because it paid, basically the money that came in went and paid for the carer so I was happy to do that.
 

In addition to losing their own income some people’s spouses also lost income if they had to take time off work to look after an ill partner or their children. Some people talked about the additional costs of travelling to hospital and parking. Patients on low incomes (with less than £16,000 of savings) can get help with the travel costs associated with NHS treatment by asking at the hospital for refund form HC5. Some people who lost hair after chemotherapy had to contribute to the cost of NHS wigs or bought wigs privately. At the time of interview some of the people we talked to had to pay prescription charges for some medicines. Prescription charges for cancer patients in England have since been abolished; there are no prescription charges in Wales and they are being phased out in Scotland and Northern Ireland. One woman had to pay for extra domestic cleaning to reduce her risk of infection after treatment. Others incurred extra childcare costs, but one woman who usually worked had saved on childcare costs by being at home.

 

Her husband missed work to look after the children and lost pay. They paid for extra childcare...

Her husband missed work to look after the children and lost pay. They paid for extra childcare...

Age at interview: 41
Sex: Female
Age at diagnosis: 19
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So how has it worked out financially with you being off work all that time?

That has been quite hard and I've recently done a Cancer Research phone survey about the implications, financial implications of cancer. My husband is actually still working short hours, because at the times when I was ill he had to be the main care giver for the children, so he's been going to work late and coming home early, so getting to work at sort of 10 and coming home at half past 4 in order to be there at both ends of the day for them if necessary. So that's obviously had quite a financial implication. 

I've been on long term sickness scheme at work, which is great, and they pay a portion of my salary, but also I was supposed to get statutory sick pay. Unfortunately that's based on your pay in the last six weeks before you are diagnosed as ill, and because I was on unpaid maternity leave at the time my pay is deemed to be nothing, so I can't get statutory sick pay even though I've been working full-time for something like fifteen years beforehand. So that's a bit of a blow. 

We've had to run two cars and that's obviously got financial implications. That's partly to do with having the kids as well, but I've had to carry on having a car really because I've been ill, that's helped out a lot. 

One of the biggest things is the cost of keeping everything clean. I spent a fortune on a cleaning company who are lovely but, and very good, and they come and clean the house, when you leave the hospital having had a high dose therapy and a stem cell transplant you're very, very, very open to infection, and they give you all these lists of things about boiling your towels and having your house cleaned and wiping your surfaces down with bleach every day and everything, which I'm afraid I just couldn't do. And so yes keeping everything clean costs a lot and probably over '200 a month we spend on cleaning bills, and still do try and keep everything under control so that I don't get infections. 

Childcare has been enormously expensive. It would have been, if I'd been full-time back at work again, my daughter would have been at nursery, but we've had to give that up through the time that I was ill, so that's over '500 a month for childcare, I think it's '550 or something. Fortunately my son's at school but he's had to go to holiday clubs and after school club so that's ratcheted it up as well. 

So it's been quite a hard year financially but I know that we're not in a terrible state, we were in the fortunate position of having some savings that we could use, so I'll wait another few years for my new kitchen.

So it hasn't put you in debt?

It hasn't put us in debt, thank God, because we had some savings. But I know that other people have, I've spoken to other people up at the hospital who've suffered a lot. I was fortunate that my job did have a long term sickness scheme attached to it and that they're still holding my job open after nearly two-and-a-half years.

And what about state benefits, were you eligible for any of that?

Yes I get, I'm going to forget the name of it, but I do get the sick'

Incapacity?

Incapacity benefit, yes. I didn't get Disabled Living Allowance, but I do get Incapacity Benefit.

And is that ongoing until you're back at work?

Yes that will obviously stop when I go back to work.
 

Costs of her illness included buying products to treat her itching before diagnosis, prescription...

Costs of her illness included buying products to treat her itching before diagnosis, prescription...

Age at interview: 47
Sex: Female
Age at diagnosis: 42
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In that case, presumably there weren't any financial implications of your being ill?

No, no, no. No, I mean it does cost money actually all the medication that I had to have, a lot of it I had to pay for. Some of it I didn't depending on whether it was dispensed by the hospital doctors or my GP. And certainly prior to my diagnosis it cost me a fortune because I was paying for anti-histamine tablets because of the itching and products to put in the bath and the shower, which didn't do any good. But you just carry on in the hope that they might do. So' and parking charges for the carparks and petrol, certainly when I had my radiotherapy, fifty-four miles every day multiplied by twenty-five, was quite a lot. But we were in a financial position for it to not to make too much of an impact. So we were very fortunate. 

Did they not say you could perhaps claim some of that money back, through the hospital?

I was told that it, you would have to be means tested and we didn't even try because, to be honest, we knew that it wouldn't happen. 

A mature student lost her PhD stipend when she became ill and chose to rent a second home in another city to become eligible to receive a particular treatment. A young woman on learning that her treatment might make her infertile considered having embryos frozen but the NHS took too long to decide whether to pay for it. She couldn’t pay for it herself so didn’t have it done (see ‘Treatment-induced infertility’). She also considered paying for a drug to boost her red blood cells rather than have blood transfusions but eventually her consultant agreed to prescribe it (see ‘Blood cell counts and infection risk’). A man chose to pay over £1000 from his savings to have diagnostic tests done privately. Several people had private health insurance but found that after they used it to pay for some aspect of their treatment their premiums increased; one man cancelled his policy. Others found that travel or life insurance policies became more expensive after their illness. Macmillan Cancer Support has a guide to travel insurance which lists companies that will insure people with cancer.

Some people who could continue working, or had already retired before they became ill, said their illness had had no financial implications. Some even found that their outgoings had actually decreased because they went out less.
*Employment and Support Allowance replaces Incapacity Benefit and Income Support that is paid because of an illness or disability for new claimants from 27 October 2008. If you are already receiving Incapacity Benefit, you will continue to get it as long as you are eligible.

Last reviewed February 2016.

Last updated February 2016.


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