Barriers to obtaining financial benefits
Threat to moral identity and fear of stigma may make people reluctant to seek help. The stigma attached to claiming benefits seems to affect even those who have a serious illness. A threat to moral identity is apparent in accounts where people stress that they would rather be working than claiming benefits, or point out that they were lifelong tax and national insurance payers and were claiming entitlements, not hand-outs. For example, a man with mesothelioma commented:
‘I suppose in a way it's only money that I'm not going to get in my old age pension, so instead of paying me an old age pension they're paying me the money now I suppose. So in some ways it's the money that you would've got paid anyway.’ (LC18, aged 55 years, diagnosed in 2002, died 2003, ex-welder.)
In our culture the diagnosis of cancer itself can be assoc-iated with stigma.22 One man was diagnosed many years ago but still felt ashamed that he had the disease:
LC15, aged 56 years, diagnosed in 1989, ex-joiner:‘I was ashamed I had cancer.’
Interviewer (I):‘But why did you feel it was something shameful?’
LC15:‘Because I was a man, because I, as a young man I'd boxed, I'd run marathons, I'd played rugby, at the time I was taken ill I was in an advanced swimming club and I just felt, I was at that time in work, you know I was the provider and I just felt ashamed that this disease had come and, come to me. I found that very hard to cope with; even now after all this time.’
Later in the interview he explained that he could have obtained relief from payment of tax that was due, but he refused to tell tribunal judges that he had had lung cancer and so suffered financially:
‘I was given no money, nothing from no-one, it was just buttons we lived on, how my wife coped with it I just don't know. We never had hardly any savings. And then suddenly I had money for tax which I had to pay, which we had spent, we had had to live on. And then later on the tax [man] wanted that and I had to go and see them; to a couple of tribunals, it wasn't a lot of money but I never had it to pay, but they questioned me, it was like a court. And to get me off it I knew if I had told them I had lung cancer they would have just discharged it then, the case. But I refused to tell ‘em that, because I wanted to be normal you know so I wanted to be treated normal, I didn't wanna be treated any different than anyone else … I didn't want them to know that I had cancer. It seems to cat-egorise me down and make me less than them you know and I didn't want the sympathy I suppose neither you know.’ (LC15.)
Barriers imposed by the illness itself. People with lung cancer must claim disability living allowance as soon as possible after diagnosis because this benefit cannot be backdated as a matter of legal right.23 The illness itself may make this difficult. For example, one man was too preoccupied with his illness to think about applying for benefits, and so suffered financially:
‘The problem is that you have all this information coming in [while in hospital] and to actually take it all in and deal with it is very difficult … they give you a booklet, or several booklets about different things and so forth and so on about benefits, but I just don't think you take that kind of information in. It's later when you start to need it more, but then of course it's too late because it's very difficult if, if you have surgery and you go through all of this stuff, may be a month, 2 months down the line you suddenly realise that, ah hang on, at the moment I should be doing this or that, any claim for any benefit will start from that point onwards whereas you should really be hooked into that system from the day of your diagnosis. I would like to see someone say, “Okay, irrespective of your situation we'll book you into a set of benefits now, and we can take you off them later if they're not applicable”.’ (LC12, aged 43 years, diagnosed 2002, ex-rigger.)
This man went on say that he found the benefits system difficult and confusing:
‘We claimed for two or three benefits before I was actually told which one I should be claiming for, only to be refused those three benefits, having filled out this huge information pack … There should be specialist advisers and I've been told that there are; however I wasn't able to access them so it obviously needs addressing.’ (LC12.)
Barriers due to failure on the part of professional staff. Some people were not aware that financial benefits were available, and depended on professional staff for information. For example, one man lost benefits because of lack of help at the right time. While in hospital, a nurse told him that a social worker would be along to discuss benefits. However, she never appeared, and he only obtained benefits much later when a community nurse discovered what had happened:
LC13, aged 67 years, diagnosed 2002, retired electrician:‘I received the allowance that the nurse looked for. It wasn't a retrospective payment or anything, it was just from the time that she filled the form in, they never paid me for the amount of time I was off.’
I:‘So what's your view about the sort of support that you got on that side from the hospital?’
LC13:‘Dismal, I can't expand on that, it's dismal, that's how I would call that.’
Barriers owing to bureaucracy and confusion about the DS1500 report form. Many people found the claim forms long and complicated or were not sure which benefits were available in their circumstances. For example, one man, diagnosed too late for surgery, had been misinformed about the DS1500 report form, and it seems that no one had told him whether or not he qualified for benefits under special rules:
‘I've been trying to get on a disability allowance for people under 65, but I was given the wrong information when I filled out the form. So I filled out the form, sent it away and I got it back saying, “no, you're not getting it”. So I appealed, the appeal was rejected so I phoned them up and asked them, “why has it been rejected?” She said, “well, you didn't have a certain form”. I said, “well who's got these forms?” I said, “I'll fill it out and send it in”, she said “well it's not your job to fill it out, it's the Macmillan nurse or your consultant ['s job] to fill it out”. The form is a DS1500 … You get very little help off social security … you've got to have a degree in higher English to be able to understand them because I don't know who makes these forms out but they are not user-friendly, to man or beast.’ (LC07, aged 56 years, diagnosed in 2002, ex-offshore medic.)
While in hospital, a patient asked to see someone from Social Services to discuss financial benefits. He was referred to a Macmillan nurse, who gave him useful advice, but he still had to see a welfare rights officer, who helped him fill in the necessary forms, before he finally obtained benefits:
‘But it did take a long time and it did seem to be a bureaucratic process to get it, but I got the welfare rights officer from the city council came to see me, and one or two pestering phone calls and some close family members who fought my corner. But it was a tussle; it was a tussle to get all the benefits acknowledged.’ (LC10, aged 48 years, diagnosed 2002, ex-merchandiser.)
A man, who was dying of mesothelioma, had to ‘tackle’ the benefits agencies for nearly 6 months. He emphasised that he did not want to be off work claiming benefits and spoke bitterly about his experience:
‘And of course, all you want to do is to get back to work, but when you're diagnosed with cancer you can't go back to work and then you've got to tackle the Benefits Agency. And to be honest it takes months, it takes months, it's one long worry. You can sit on the phone for days and days on end, for months on end just to get what you're entitled to.’ (LC18, aged 55 years, diagnosed 2002, died 2003, ex-welder.)
He went on to describe how his family had suffered because of the slow bureaucratic process, and he explained that it was hard to cope with financial problems when he was feeling so ill:
‘But it took me nearly 6 months to get my benefits sorted out and in that time I had the television licence people round knocking on the door telling me my television licence was out of date, I got fined for that. The gas board was going to cut my gas off, the electric people was hammering on the door. We went from a quarter meter onto a payment card and that is very difficult when you're not well and you really don't feel well enough to cope with all that.’ (LC18.)
Occasionally benefits are backdated. The man quoted below applied for a disability allowance and was turned down. He was encouraged to reapply by another patient and the same thing happened. His struggle was eventually rewarded when a tribunal unanimously awarded and backdated the money:
‘So I applied for it [disability allowance] again and I was turned down. I then asked them to re-look at it, they did do and I was turned down again. So I finally took them to a tribunal. When I got to the tribunal I was awarded it by every member of the tribunal and it was backdated a whole year. So I was quite lucky, but there's an awful lot of people out there miss out on benefits because they don't apply for them at the right time.’ (LC28, aged 58 years, diagnosed 2000, ex-fire-fighter.)
Better access to benefits
When looking for examples of less difficult experiences we found that some patients had received timely financial advice. Both doctors and nurses had played an important part in helping people to obtain benefits. One woman explained how a nurse had helped on the day she received the diagnosis, even though finances were ‘the last thing’ on her mind:
‘And then I spent some time with a Macmillan nurse who actually got me disability living allowance. I mention that because there's a lot of people that get cancer that don't know that they're entitled to it and it's quite a help. I know finances are the last thing on your mind but it's enabled me not to worry too much about not working. And it's a benefit that you get whether you're working or not, it's, you know it's not taxable so whatever you get it's all for you.’ (LC09, aged 55 years, diagnosed 1997, ex-accounts assistant.)
Another man was grateful for a specific grant he received from Macmillan:
‘But the Macmillan organisation can open doors that you don't realise are there [discusses benefits] … and they will give you a one-off small grant that can help you to catch up or help you in your quality of life. For example, one of the consequences of cancer can be an enormous weight change and your wardrobe is inappropriate so they will help you restock your wardrobe. I got a grant of about £600 from them as a one off, very early on, and it was very helpful.’ (LC10, aged 48 years, diagnosed 2002, ex-merchandiser.)
Others received invaluable help from their GPs, as this patient explained:
I:‘Can you say a bit more about benefits?’
LC05, aged 55 years, diagnosed 1997, ex-paint sprayer:‘Oh right, actually the doctor got a form and, saying that, at my age I couldn't go back to work and he called us down, filled in the forms and all that and the claim went into the benefit offices and they sorted everything out. I got an allowance for not working and I also get a “mobility” [allowance], which you can either keep the money or get a car. And that's really what it's all about is getting out and about and just get back to normal life as much as you can.’
These experiences highlight how much easier it is for patients if the doctor or nurse takes the initiative about benefits, rather than waiting to be asked for help, or assuming that someone else is dealing with it.
Some patients attended support groups where they received help and financial advice:
‘They tell you all what's best to claim, how is the best way to claim unemployment benefit or incapacity benefit. We have a different person come now each month, it's one day a month for an hour and a half, we have a lady come from the pensions bureau that tells you about pensions or one that tells you the best things to claim, what you can claim according to your age and your sex and all that sort of thing.’ (LC41, aged 57 years, diagnosed 2002, ex-furniture retail manager.)
One man, whose wife worked in the ‘Benefits Agency’, found it easy to obtain his benefits because his wife obtained the relevant forms, and another man — uniquely — asserted that the situation had improved. However, he was a lecturer in social work, which might explain this unusual or ‘deviant’ case.24
I:‘Did you find the forms difficult to fill in or was it easy?’
LC44, aged 54 years, diagnosed 2003, part-time university lecturer:‘No, they're very straightforward. I mean I think that's one of the things that's improved with social security forms is they, they might be very lengthy sometimes but generally they, they're very clear and easy to follow … I know some people find them confusing um, but then there's usually somebody who will give you some help and advice to complete them.’