Many people of working age who develop leukaemia have to stop work temporarily or permanently (see ‘Work and daily life’) and may lose income. In Britain employed people who are too ill to work are entitled to basic statutory sick pay for up to 28 weeks. Some employers have their own sick pay scheme and several people had been paid their full salary for six months; some continuing on a lower salary for longer. Frances received her full salary for a year. Self-employed people are not eligible for statutory sick pay but may be able to claim other state benefits.
Ann is a civil servant. She is divorced with no children. Ethnic background' White British.
Presumably your job was secure all the time that you were off…
…given who you work for? And presumably they had no excuse but to give you everything you were entitled to?
And you knew your rights I would imagine?
Yeah, I mean I’ve worked for the Department [of Work and Pensions] for over 20 years so at the time it was probably about 13, and I’d got about 13 years service so I had all my entitlements that, I knew what I was entitled to, yeah.
So for the benefit of other people watching this, what did you get from your employer?
I got six months full pay. I got six months half pay. Possibly the benefit rules have changed since but during that six months I also claimed Incapacity Benefit. And then after that six months I got onto what they call pension rates, sick pay at pension rate, which is, it’s sort of not reckonable towards your years of service and your pension. And I was on that for about three to four months.
So you managed your finances all right. Was there any hardship?
Well because I was married I mean obviously my husband was working but my husband’s self-employed. So not necessarily between us there wasn’t, but obviously I was bringing in about a third of what my normal wages were.
Employed people whose sick leave continues beyond the 28-week limit for statutory sick pay can claim Employment and Support Allowance (formerly Incapacity Benefit). Unemployed and self-employed people who have paid appropriate National Insurance contributions can also claim this. Those whose illness means they cannot look after themselves can claim Personal Independence Payment (PIP) if aged under 65 or Attendance Allowance (after age 65); there are different rates depending on the level of disability. The terminally ill can apply under special rules which enable their claim to be dealt with quickly; they should automatically receive the highest rate care component of this benefit. People caring full-time for someone who receives Personal Independence Payment (PIP) or Attendance Allowance may be eligible to claim Carers’ Allowance.
It can be difficult for people who are feeling ill to think about financial issues or find out about state benefits, so it is important that family members or professionals help with this. Many people had learned about their entitlement to benefits through a charity or a hospital social worker, who often helped to fill in the applications forms. Dianne suggests that professionals will paint a more realistic picture of a person’s incapacity, making a successful application more likely. Kerry waited weeks for a social worker to help with her application. Some people’s applications were refused and they had to reapply or appeal. Thelma’s husband tried to claim the Carer’s Allowance but was unsuccessful.
Gilly is a therapist and yoga teacher. She has no children. Ethnic background: Irish/American / Turkish/English.
So you weren’t eligible for any state benefits?
You did get something?
Miniscule, yes. But that was only because the welfare rights officer was just brilliant at working out, I mean I could not have done it. I mean how on earth you’re meant to apply for stuff when you’re drugged out of your brain? You can barely focus and you’re meant to fill out a fourteen page form, I have absolutely no idea. And you’re meant to do it within fourteen days and provide all the documentation and you happen to be four miles down the road. I mean just begin to get real here. And they want sixteen bits of information which you don’t have, and your mobile phone has just gone dead. So I mean the one thing I can say where I was at was the fact that we had a brilliant welfare rights officer who was able to come in with all the various forms, fill them in for me and send them off. And half the time I had no idea even what I was eligible for, and also when they made mistakes, which was interesting.
Age at interview:
Age at diagnosis:
Thelma is a retired waitress. She is married with one adult child. Ethnic background: White British.
Tell me about finances. Presumably I mean you had to give up work, how have you managed?
Well the thing that I got choked about, when I applied for disability I couldn’t, I was absolutely gone. Well in actual fact a woman who works for that kind of thing brought the forms round and helped me fill them in because I didn’t, so many pages and that and, God willing, I never claimed sick because I didn’t have to, I was lucky in my life. And it always baffled me. I should have said something but I didn’t. What did you do? And I put exactly, I said exactly, well she was there, the woman, and I couldn’t wash myself, I couldn’t bath, I couldn’t do anything. Couldn’t hardly get to the toilet -- my poor husband, and he’s thirteen years older than me, so I’m 66, he’s 79, but he’s been a tower of strength, thank God he was there - everything. So wrote the truth down for a bit of disability to help because I was getting taxis to the hospital, getting all taxis and that. My husband was getting taxis, we were getting taxis.
When the letter came back it was a refusal. ‘Sorry, we’re going on what your general practitioner said, no, you don’t come in for anything.’ So I said to my sister, ‘I’m not going to argue. What’s the point of arguing? I don’t want to argue over anything like this. I’m too ill to argue. I don’t care.’ So she, ‘No, no. What do you mean what the general practitioner has said? What has he said?’ And I thought, ‘Have they made a mistake then?’ Because the general practitioner to say, my general practitioner is the doctor, not the hospital doctor. So I said, ‘Leave it.’ So my sister said, ‘No, I’m not leaving it.’ When I told the lady who filled it in, she went, ‘What?’ My sister went up and see her. She went, ‘What? But she can’t walk, you’re bathing her, you’re doing everything for her.’ She said, ‘Well here’s the letter back.’ So my sister sent a letter back to say we come out and wash her and everything, but what we didn’t go to say, well what did the general practitioner say? The general practitioner hadn’t even been out to see me so how could he diagnose when he hadn’t come out to see me? My hospital doctor could have done. But she said, ‘The general practitioner.’ So I got refused and I was diagnosed as terminal. Well I am diagnosed as terminal.
Anyway when my sister wrote they sent 16, said, ‘Give you £16 a week.’ I said, ‘I don’t argue anyway.’ Then all of a sudden a letter came through to say, ‘We’ve reviewed your case and we’re going to give you £44 a week.’
But I thought I should have really, what I should have done really is gone up to that general practitioner, when I was well, well enough to say, ‘What did you diagnose on your thing? You hadn’t even been called out to me. I’ve never. When I did come to the doctors I got a taxi up to you. I didn’t call you out. I got a taxi. I phoned a minicab because I couldn’t get up that hill.’ I thought, I never, I didn’t, I thought, ‘No I don’t. I don’t want to argue over anything like that.’ But anyway I’ve got this £44 and I don’t know why they reviewed it or something and yeah but I never had any care come out to me because I had my family. They all did it for me. So that was that.
Several people had succeeded in getting one or more benefits. Ian’s Disability Living Allowance enabled him to buy a car which he used for attending hospital appointments. He received some Incapacity Benefit in error and had to pay it back with his employer’s help. Frances’ partner was entitled to claim Incapacity Benefit as she was taking time off work to look after her. People who reached retirement age had their benefits replaced by a pension. Some were eligible for a disabled parking permit or exemption from road tax. For links to more information about state benefits see our practical matters resources.
Some people received payments from health insurance or critical illness policies that made up part or all of their lost income. Jim received payouts from two policies that amounted to more than his usual salary. Others regretted not having such policies. Some people had applied for grants from charities such as Macmillan, Leukaemia Care or CLIC Sargent. Ian received a payout from the police force for whom he worked; Kerry’s colleagues had a collection for her. Others received financial help from family.
Marilyn is a retired administrator for Oxfam. She is married with one adult child. Ethnic background: White English.
So before you had your treatment?
Yes, before I had treatment. Yes, there was no real problems with finance. Obviously, going from full-time work to part-time work there was quite a drop. But we just adapted and we’re not huge spenders, we don’t go abroad particularly, we’re very sort of home-lovers really. Go on holidays and things like that, so we still managed to maintain the lifestyle that we were happy with, so that was all right.
When I had to actually give up work, well, in fact I decided to retire on health grounds, that was a little bit of a worry. So I investigated Incapacity Benefit. I thought, “Well, there’s no point in wondering if I was entitled to it. I’ll just do it.” Luckily, I was entitled to it so that took over from my part-time salary, which was probably about half of what I was earning. The firm I worked for were quite generous paying holidays and things like that.
That was okay for the start because again the work that my husband was doing was coming in quite well so it wasn’t too much of a problem. When I was 60 the Incapacity Benefit stopped but then I got my pension. So again things weren’t too bad. We were still running two cars although every time we sort of had to get tax and stuff like that we kept thinking, “No, we can’t.” But to cut a long story short we ended up lending the car out to my daughter so it was being used, so that was all right.
Some people had no financial difficulties, either because they had retired before their illness, had remained in work, or received payments equivalent to their usual salary. Some people’s reduced income had been balanced by spending less, partly because they had gone out less. Others adapted their lifestyle and reduced outgoings further to make ends meet, particularly those whose partners had also lost income (see ‘Support from a spouse or partner’). Gilly considered selling her home but decided not to. Elsa had downsized her home and lived off her savings and benefits. Dianne cashed in some endowments to supplement her pension. After returning to work, Julie moved to a less stressful job and learned to live on a much reduced salary.
John is retired. He is married with no children. Ethnic background: White British.
Can you talk to me about financial implications? You were away from work for a year.
Well, I was very lucky to be paid on full pay for six months and then half pay for a period, which worked out okay because I eventually ended up with more money than I’d had when I was at work because I didn’t really spend much money when I was in hospital. And I was out of hospital for such short periods that I’d never needed a lot to be bought. So it kind of worked, economically it worked okay but I can understand for a lot of people it really is a problem. So I didn’t worry about money. But to some extent the minute I was diagnosed and going into hospital and going to be there for a while, I stopped worrying about anything else. I stopped worrying about work and I stopped worrying about other things. And I found that was the best way to deal with it.
So did you claim any state benefits or you didn’t need to?
I didn’t claim any state benefits. The only thing I regret not getting was a disabled sticker for the car. And that was simply because when I discussed it with my GP he never seemed to understand that there was a possibility of getting one. Whereas a lot of my friends who also were patients had had disabled stickers and it was terribly convenient in terms of the ability to go backwards and forwards to hospital and visit for their relatives.
Some had spent extra money during the illness on counselling, complementary therapies, moving house or home adaptations. Chanelle bought a life insurance policy. Financial security was a source of worry for some, which added to the emotional stress of the illness. Janet would like to buy-in help at home but cannot afford it.
Janet is a retired NHS Manager. She is married with two adult children. Ethnic background: White British.
And yet, another thing I have done when I had some money maturing I arranged to have an extension built at the back of the house which has got a downstairs toilet. And because I thought as we’re both getting older and I’m getting older faster than he is, that would be useful. And we are buying a car this week which was higher off the ground, easier to get in and out of. And I said, ‘We can stay here. The only other thing we need in due course is a stair lift.’ We’ve had the bathroom changed round as well because I found that getting in and out of the bath was difficult. He agreed so we’ve gone for a shower, completely new bathroom with shower unit etc. with a shower seat in it, none of which have we received any grants for. So yes it is expensive.
Did you try and get grants? Where would you get them?
We’re not quite eligible. Because I have a small pension from the NHS we’re not eligible. My husband has just the state pension and I have a part state pension because I took time off to bring up the children and a private pension from the NHS. And we’re just above the level to claim anything.
So you can’t have any benefits of any sort?
No. We are the poverty trap. My mother who has nothing does far better than we do.
Age at interview:
Age at diagnosis:
'Ace' is a retired musician. He is divorced with no children. Ethnic background: Black Irish/American.
Had you already retired when this happened?
Well, I wasn’t doing a lot, let me put it this way. I mean I couldn’t carry any amplifiers about because of my hip. I was a musician and I couldn’t really, that was it for about twelve months or two years, I couldn’t walk properly so there was no point in me trying to do it. I mean I used to sing in a pub or something like that, playing the piano or whatever after I left the band I was with, and that was that. I had to give it up really. That was it.
So how have you managed for money?
Well, I’ve been on invalidity money, you know what I mean, tell you the truth, it’s been hard but I mean I get the top rate but I mean that’s finished now. And I had a quote, only a quote, I know, but I mean I did find out, you can ask the pensions people how much you’re going to get, and it’s £69 a week. That’s a lot of drop from what I was getting, so they’re going to make it up with pension credits or summat and something else and so I’m hoping I can manage.
So you were on one of the benefits and that’s actually stopped?
Yeah, it stops when you’re 65.
Ah, right. So it hasn’t quite stopped yet?
No, no. I’ve got a couple of months. But other than that I shall be back to poverty I suppose. You know, I’ve got a couple of pounds here and not a lot, nothing to shout and bawl about. But that’s only going to last about four or five months and that’ll be gone, you know what I mean.
So, I mean is…
But I mean it’s obvious that as soon as I can get fit and all that I shall go back on the piano. I mean I haven’t played for such a long time and it’s going to take me a good six months to get back into it. But I haven’t got a piano at home now so I’ve got to find out where I can go and get practice and, as you know, practice makes perfect. And I’m a virgo and I do like to do things right when I do things. So it won’t take me long to get back in. I mean it’s like riding a bike isn’t it? And I was very fast playing the piano so it’ll take me six months, seven months, get back into it and then we’ll start with a new hip and a right frame of mind.
I hope it works out that way anyway.
Yes, so do I. So will you be going back to work purely for the money or because you want to?
Oh yes, I mean I have to, you know what I mean, I have to. I don’t think I can manage because I do like a dram. I mean there’s nothing worse than walking in a pub, have one pint and then have to walk back out again because you can’t afford it. And I’ve never done that in my life, but I mean you have to watch your pennies. And mum’s, you know, I mean I don’t know how long I’ve got mum for. I live in a council house so I mean obviously, it’s a three bedroom house and they ain’t going to let me stay there. They’ll have to chuck me out and give me a small flat somewhere, I don’t know, or whatever. It’s got to, I mean if I can’t walk properly then it’s got to be on the basement. I’d like to get somewhere like a, with the warden there, or something like that. I’ll have to, you know, it’ll have to be somewhere like that. But it’s all worry you don’t think about but you have to plan things for t
Another financial outlay associated with the illness was travel to hospital appointments and parking. Some people travelled long distances to hospital by car or taxi. Aley also used taxis to go shopping after his hospital discharge in order to avoid catching infections on public transport. Hospital parking fees were considered extortionate, especially when hospital visits were made daily by the sick person or their partner. A disabled parking permit not only made parking easier but could also reduce the cost. Patients on means tested benefits can apply for help with travel and parking costs. Those on low incomes can also get help with travel costs by asking at the local hospital for form HC11.
Ann is a civil servant. She is divorced with no children. Ethnic background' White British.
Were there any other costs to being ill? Financial costs?
I would say it would be to do with the travelling. I mean I know they always explain to you that you can get the transport services but I’m actually a member of a health society, which is for, I think it used to be the old sanatorium society or something strange like that, for civil servants and post office workers, and they were absolutely fantastic with me. And they used to do on a monthly basis, I used to tell them which hospitals I’d been to and I used to get petrol money. But they also explained that if I wasn’t well to get a taxi and they would reimburse me the cost of the taxi.
Some people had to pay NHS prescription charges for oral chemotherapy and other drugs taken at home, whereas all inpatient treatment was free. Although buying a prepayment certificate could reduce the cost, some people thought the charges unfair for essential treatment. 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.
Kelly is a sales executive. She is married with two children aged 12 and 6. Ethnic background: White British.
The thing I don’t like, not with the nurses or the hospital, it’s the government really, because when I was on tablet form of chemo you have to pay for your own. When you’re not in hospital you have to pay for your own chemo, so all the oral tablets I had I had to pay for and I don’t agree with that at all. Because if they can give drug abusers methadone on the NHS then they should give it to cancer patients who are much more deserving because they didn’t put their self in that situation.
That’s it. And I still had to pay for my own chemo out of that and to have a pre-payment card that’s like £40 for a 4 month one, which is only £40 but I don’t see why you have to pay it when you’ve got to have the treatment because if you don’t you die.
So you did get that pre-payment card.
I had to pay for it though. Yeah.
But it nevertheless probably saved you some money.
Yes. It did definitely. I would suggest that and I’d suggest you get the shorter one rather than the longer one and then as you’re coming to the end of it order some drugs so you’ve got and then order another one.
Travel insurance policies become more expensive after cancer. As a result some people limited themselves to short trips to Europe that were cheaper to insure than travelling further afield. Others took the risk of travelling without insurance. Len used to spend the winter in Tenerife but his insurance now limits him to a maximum of six weeks. Charities such as Macmillan and Leukaemia Care can suggest suitable insurance companies.
Susan is a retired teacher. She is widowed with 2 adult children plus 4 step-children. Ethnic background: White British.
I mean my story may be better than average but I mean it’s really not affected my life that much except I cannot get travel insurance. You have to declare your conditions, I mean apart from five hip operations and all this other sort of stuff that goes with it, they don’t really want to cover you except at an exorbitant price, and certainly not for the States and Canada where one of the sons lives, which is a bit upsetting.
So do you go anyway without the insurance…
…or do you not go?
No, not across the Atlantic, no. I think it’s the height of folly really because you could end up with an enormous bill for somebody else to sort out.
Have you asked Cancerbackup, for instance, about companies that will insureyou?
Because I know that they have a list of insurance companies that will insure people with cancer. I’ve no idea what the premiums are but they do have a list of special companies.
Well, Leukaemia Care produced some and I managed to do that for ordinary short trips of ten days or something in Europe, and it’s not exorbitant. But you’ve still got to declare everything through their normal sort of medical check system.