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Living with dying

Financial help

People with lung cancer may experience financial hardship, and are usually entitled to one or more government benefits, such as Statutory Sick Pay or Industrial Injuries Disablement Benefit.

Statutory sick pay is usually paid during the first 28 weeks of sickness (not paid for the first 3 days) to people who earn more than the minimum (for current rates and information on benefits see
GOV.UK).

One man found Statutory Sick Pay inadequate. After 28 weeks he claimed Incapacity Benefit (now Employment and Support Allowance) and he described the forms that he had to complete as 'absolutely horrendous'. Many people thought it was unfair that they had regularly paid their taxes yet found it so hard to obtain benefits.

 

The forms for claiming financial benefits were 'horrendous' and difficult to understand.

The forms for claiming financial benefits were 'horrendous' and difficult to understand.

Age at interview: 57
Sex: Male
Age at diagnosis: 56
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Right you were going to say a bit more about benefits?

Yeah SSP you only get SSP which is Statutory Sick Pay for 28 weeks, after that you then have to, you then get a form from the, your pay people, whoever does your salary for you which is called an SSPL which is Statutory Sick Pay Leaving, that's what the L stands for. And that has to go to social security and what happens then is they will then give you this form here which is your claim for Incapacity Benefit, because after 28 weeks you don't get any SSP so you have to claim for that.  

And that's what the doctor has to help you fill in, is it that form?

No, the doctor fills the first one in yes, the doctor fills the first one. These ones, well you'll probably the doctor to help you fill that one in as well but some of the forms are absolutely horrendous. You've got to be, 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.


One woman said that a Macmillan nurse helped her fill in the forms for benefits. She received the money after a couple of months, backdated from the day the claim was made.
 

A Macmillan nurse helped her by filling in forms to get the Disability Living Allowance.

A Macmillan nurse helped her by filling in forms to get the Disability Living Allowance.

Age at interview: 55
Sex: Female
Age at diagnosis: 50
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That day, but then about three days later when I had to go back to the Chest Clinic again for the actual diagnosis and I saw a proper doctor, as I like to put it, she explained what sort of type of cancer it were, which it's small cell.  And in most cases that would be inoperable, it's better with chemotherapy. 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. You know it's, 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. And like I say, then it didn't particularly bother me, but now I find it a very helpful benefit.

Is that available for anybody?

Anybody that gets a terminal diagnosis, anybody.

And do you mind me asking how much it is?

I think it's about '52 if you don't get the Mobility with it and its '95 if you get the mobility with it as well.

Do you just have to fill in a lot of forms?

No, the Macmillan Nurse did it all for me. And I got it within a couple of months, backdated of course, you know so any, any of the health people, probably if you, because it is a big thing, they just, if they're the medical person and they know your problem they can just skip through a lot of it, whereas we'd be going through trying to fill in every single thing, so it's better probably to get somebody from, your doctor or your support group or hospital to go through and do it for you.

People need to know about benefits to claim as soon as the diagnosis of lung cancer is made, because there is no legal right for these benefits to be backdated. They can only be backdated at the discretion of the Benefits Office.

One man, diagnosed in 2002, argued that there should be more financial advice for people with lung cancer. Although many got advice from their doctors and nurses, others had little help. One man obtained benefits with the help of a Macmillan nurse and a Welfare Rights Officer from the city council. Macmillan also gave him a small grant to help him cover expenses.

 

Argues that more advice should be available so that people know which benefits they can claim.

Argues that more advice should be available so that people know which benefits they can claim.

Age at interview: 43
Sex: Male
Age at diagnosis: 43
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Were you given any information in hospital about sort of social security, if you needed help at home, that sort of thing?

Yes, we were, and the problem here is that you have all this information coming in, and to actually take it all and deal with it is very difficult, so I think although I'm sure we were given, I actually had a conversation with somebody about this, and it is there, they give you a booklet, or several booklets about different things and so forth and so on about benefits and so on and so forth, 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, two months down the line you suddenly realise that, ah hang on a moment I should be doing this or that and that and this, any claim for any benefit will start form that point onwards, whereas you should really be hooked into that system from the day of your diagnosis.

And for me I think I would like to see that, 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." But if you don't claim for them then, you're not entitled to them, and as a lung cancer patient you could be dead before that happens, so you wouldn't even have access to any benefits for a partner for instance so that all then becomes really difficult, you wouldn't be entitled to certain benefits towards funeral costs for instance, and so forth and so on.  

You have to do this, it's not made clear to you and if somebody gives you a booklet that says "Right here's all the things you can claim for', that's great so you know what you can claim for, whether or not you can actually get that benefit is another thing altogether. 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 of you know what's this, what's that, all the rest of it.  And then they just write back and say, "Oh you're not entitled to that benefit because you haven't done this," or whatever, "You don't qualify for that because you're not within this criteria or whatever." They don't tell you what you can't do until you actually claim for it. It's a really weird system and it must cost millions whereas if there was somebody there who says, "Okay this is your circumstances, this is what you need to claim for," and that should be it.

There should be specialist advisors and I've been told that there are, however I wasn't able to access them so it obviously needs addressing. 

 

A Macmillan nurse helped him obtain the Disability Living Allowance (higher rate) and a small...

A Macmillan nurse helped him obtain the Disability Living Allowance (higher rate) and a small...

Age at interview: 48
Sex: Male
Age at diagnosis: 48
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But the Macmillan organisation can open doors that you don't realise are there. And there is a history of people with cancer and their families eventually tackling the benefits agencies and it taking too long, so nowadays they will acknowledge your situation very quickly and put you on the higher rate of Disability Allowance, without having to wait the six month period, because if you've had a malignant tumour there's a high probability that you won't survive much beyond the six month period, so nowadays everybody get the full allowance of 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, but I believe it is easier now than it was in the past. But it's something you have to, something you have to chase for. But there are agencies there that will tell you what you're entitled to and you're entitled to 'Motability' allowance as well.

And did you say the Macmillan's also have small grants that can also help you?

Yes they will, they will give you a one off grant to help you to catch up or to help you in your quality of life. For example one of the consequences of cancer can be enormous weight changes and your wardrobe is inappropriate so they will help you to restock your wardrobe. Yes, I got a grant of about '600 from them as a one off very early on and it was very helpful.

One man, who had difficulty walking, applied for benefits (then Disability Living Allowance) and was initially told he wasn't eligible. He appealed to a tribunal and won his appeal. He used the extra money to help pay for his car so that he could go shopping.
 

He obtained Disability Living Allowance (Mobility component) after an appeal to a tribunal.

He obtained Disability Living Allowance (Mobility component) after an appeal to a tribunal.

Age at interview: 58
Sex: Male
Age at diagnosis: 55
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Yeah, financially I wasn't too bad because I have my pension from the Fire Service but I did initially apply for a Disability Allowance and initially I was, they send you a book out and it's about eighteen pages of all so stupid questions, and I applied for it and was turned down. And then probably the following year I was told by somebody that had got a Disability [benifit], that I should be getting it because I was worse than them. So I applied for it 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. As soon as you're told that you have lung cancer you should apply for your benefits, and hopefully you should get them straight away if you apply. Because when you're initially told; it is life threatening and you should get it instantly. I mean if you've, like with me I've never been out of work in my life, I've paid into the system all my life and then just to be told you're not entitled to it

What's that benefit called, Disability Benefit?

It's, I actually get Disability Living Allowance on the Mobility side of to help me, it helps me pay for my car so that I can go shopping. I live on my own so I have to do my own shopping for obvious reasons. Now I couldn't go to the local shops and carry my shopping back without my car, I just could not do it, I would pass out through lack of breath.

And that's a Government benefit is it?

And that's a Government benefit yeah Disability Living Allowance, I get the Mobility side of it which helps me financially pay for the car.

People can also apply for a disabled badge for parking (Blue Badge Scheme). There is also a voluntary organisation (Motability), which helps people gain access to a car or other mobility aids.

People with mesothelioma are entitled to Industrial Injuries Disablement Benefit if they can demonstrate that they were in contact with asbestos during the course of their paid employment after July 1948 or during military service. It may also be possible to claim a Lump Sum Payment from the government or personal injury compensation from an employer.

 

He obtained compensation and Industrial Disablement Benefit when diagnosed with mesothelioma.

He obtained compensation and Industrial Disablement Benefit when diagnosed with mesothelioma.

Age at interview: 56
Sex: Male
Age at diagnosis: 55
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How has all this affected you financially and what you have to do to get any help at all?

Well when I was first diagnosed and the doctor said, "You'll have to pack up work and sort your finances out because you know if you've only got a year to eighteen months', it did worry me a bit actually because me and my wife has always worked and we never claimed for anything you know and it did worry me because if I had to pack up work and my wage is gone you know. But you can get benefits, Industrial Disease Benefit, which you have to fill a forty page form out, well most of them is like that and we've never done it, and it took us ages to fill these forms but we done it in the end and you do get compensation but it doesn't mean a thing really, you know your health is more important than that. But then again it does help, you know because if you haven't got a wage coming in the benefits does help a bit.

 

Having worked with asbestos he explains the process of claiming compensation from his employer.

Having worked with asbestos he explains the process of claiming compensation from his employer.

Age at interview: 54
Sex: Male
Age at diagnosis: 53
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Yes as soon as I was diagnosed with mesothelioma the lung cancer nurses and the doctors who I was seeing all said that I should be looking into claiming compensation because mesothelioma is generally only caused by exposure to asbestos. And if you've been exposed to asbestos as I was, probably thirty years, ago it's generally down to employer's negligence. At the time, because I was still coming to terms with being diagnosed with a terminal illness I didn't want to sort of muddle my mind up with other things. I thought that claiming compensation would involve forms and things like that but in actual fact one of our nurses, although she wasn't allowed to recommend a solicitor she suggested that there was one in our local town who was a specialist in that field. And I spoke to him on the phone and he seemed very understanding and seemed to be very knowledgeable about it. And so we decided that we'd go and see him and it's been very easy. He, because he's a specialist in industrial disease claims, he's very understanding, he knows that he can't talk to me for too long because I get tired and generally he's just presenting things for me to approve and sign. We've done a lot of that by email which has made it easy and the, the claim has been going really well. And when we first went to him I said that  I didn't want to have the bother of claiming and he said to me "Well you have to decide whether you want to make the claim so that you get the money in your lifetime or whether you wait until you die and your dependants claim." And so that was, we thought well we'll probably want to claim to give us a quality of life for the rest of the life we've got. And so it's all been fairly plain sailing.

One man with mesothelioma found the Benefits Agency unhelpful. He advised others to try to talk directly to the head of the department. His car, which he obtained through a charity (Motability) had been a godsend. Another man obtained compensation with help from a support group.

 

He found it very hard to obtain financial benefits after he was diagnosed with mesothelioma.

He found it very hard to obtain financial benefits after he was diagnosed with mesothelioma.

Age at interview: 55
Sex: Male
Age at diagnosis: 54
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Yes when you first, when you first can't go to work you get sick pay, the firm I worked for didn't actually pay sick pay, so you go from that to state benefits, which is very little money. And of course all you want to do is 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, it's one long worry. You can sit on the phone days and days on end, for months on end just to get what you're entitled to. Everybody, every department is split up, so you can claim this benefit from this office and they have to send you a form from another office to claim another benefit and then you have to claim another benefit and the people there I'm sure think that they're giving their own money away because they just are the most unhelpful people that I've ever experienced. I mean everybody goes to work and when they go home from work you should feel like "Oh I've done an excellent day's work today," but where these people get their job satisfaction from I really don't know, because they just do not understand what it's like to, for one day to have a wage coming in and the next day nothing, and you're just pushed from this number to that number.  

But in the end I found the secret and that is to find the department head's name first of all, get the manager's name, and then every time you phone up you go direct to that manager. Explain your situation, befriend the bloke, make sure you think he's your friend, and ask him how his wife is and everything else, and in that way you gradually get your money. But it took me nearly six months to get my benefits sorted out and in that time I had the television license people round knocking on the door telling me my television license 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, but there is no choice, you have to cope with it. And these people they just give you the run around and run around, it's so haphazard.

 

Says that once he obtained his benefits and a car via a charity for virtually nothing the...

Says that once he obtained his benefits and a car via a charity for virtually nothing the...

Age at interview: 55
Sex: Male
Age at diagnosis: 54
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What benefits can you end up with if you're lucky enough to get through the system?

You can get Incapacity Benefit, Disabled Benefit, I get an Industrial Injuries benefit. And the other things, I mean there is good out there, once you've got the system and you're into the system you can get your; I got a Mobility car which is a godsend to me. Mobility there's a charitable organisation [Motability] that actually get you a car for virtually free but it gives you so much freedom, and all you have to pay for is the petrol in the car.

Does the government organise that?

No, that's a charity, mobility [Motability] is a registered charity but they are, but you have to get certain benefits, invalidity benefit before you can get that, but then you can also get the little blue sticker for the window of your car, to help you with parking and stuff like that. So once you get there it's fine, you get enough to live on and you get a car and you get free parking. So once you get, beat the system it's brilliant. But it's getting there and it takes months and of course you're in so much debt at the end of it that you really use all your benefit paying the debts off. Its fine if you've been very clever and put a few thousand pounds by, but if like us we live week by week then it was, it was an absolute trauma.

 

He obtained benefits and compensation through a support group that helps those with mesothelioma.

He obtained benefits and compensation through a support group that helps those with mesothelioma.

Age at interview: 62
Sex: Male
Age at diagnosis: 61
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I believe you can get some sort of financial compensation from the Government for asbestos. Have you been advised about that?

I didn't know anything about that whatsoever, and the first time I went for chemotherapy I was talking to one of the guys there, and he said, 'Have you had all the leaflets from the Macmillan nurses?' So I said 'no'. The Macmillan nurses and mesothelioma hadn't really connected in my brain, and he said, 'Oh well, here's the address, give them a ring, they'll send you the leaflets'. And he said, 'Have you thought about, sort of, applying for some sort of financial help?' I said 'No, why?' He said, 'Well, here's an address, write to them', and, it's the support group up in the north. He was using actually one in Liverpool. I contacted them and they've been brilliant, and right from the start they said to me, 'Well you need to apply for an industrial injury', and they asked me lots of questions, and eventually we came to the conclusion that this one particular factory where I had worked for a while is a potential likely cause. And their insurers will sort of pay compensation, so the various things have been put in place, so' yeah. I have applied, and it's just sort of followed its natural course. 

When you said the support group up in the north, is that the Roy Castle Lung Cancer Foundation, or is this a support group specifically for mesothelioma?

Mesothelioma; it's an asbestos-related' most of the cases, or, or the majority of cases are likely to come from the northern counties, because there were asbestos factories up there, whereas we didn't have many in the south. So, there is a support group, and once you're in touch with them, they virtually handle everything, and they steer people in my position through the various things that they think we should do, and I've just followed their guidance really.

When claiming benefits it is best to put enquiries in writing, and to keep a copy.

Last reviewed November 2016.

Last updated November 2016.


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