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Living with dying

Financial help when you have a terminal illness

People with a terminal illness may experience financial hardship, and most are entitled to one or more government benefits. But people don't always know how to claim these benefits, or whether they would be likely to qualify for them. A woman who recalled being shown how to apply for a Disability Living Allowance (now replaced by Personal Independence Payment -PIP) said that no one had asked her or her husband if they were managing financially.

Statutory sick pay is usually paid up to 28 weeks of sickness (not for the first three days) to people who earn more than the minimum (for current rates see GOV.UK).  Employment and Support Allowance is usually paid after Statutory Sick pay has stopped.

For a person to qualify for Employment and Support Allowance a Work Capability Assessment needs to be carried out. GOV.UK explains what this involves:

“After your initial claim for Employment and Support Allowance, you have to complete a questionnaire about how your illness or disability affects your ability to complete everyday tasks.

Your own doctor may be asked to provide a medical report.

An approved healthcare professional will consider the questionnaire and any medical reports, along with any other information you may have provided.

If the approved healthcare professional feels that the DWP will need more information to make a decision on your benefit claim, they will recommend that you attend a face-to-face medical assessment.”

For more information on Employment and Support Allowance our practical matters resources.

People need to know about what benefits they are entitled to and to claim as soon as a diagnosis of serious illness is made, because there is no legal right for these benefits to be backdated. They can be backdated only at the discretion of the Benefits Office.

Personal Independence Payment (PIP) is a benefit for people of working age (16-65) with disabilities (or those that are terminally ill) who need help with daily living activities or help getting around, or both. It has replaced Disability Living Allowance (DLA) for anyone making a new claim. PIP isn't based on National Insurance contributions and isn't means-tested. You can claim it whether you're working or not.

Attendance Allowance is a tax free and isn’t means tested. It is paid to people over 65, to help with the cost of their care or supervision needs, which should have existed for six months before claiming unless you are terminally ill and then you can apply straight away (under DS 1500 special rules). Any level of Attendance Allowance can increase your entitlement to Pension Credit, Housing and Council Tax Benefits, and health benefits, etc. You can get the benefit even if you live alone with no help. As long as any help or supervision is reasonably required you could still qualify for Attendance Allowance.

Disability Living Allowance (DLA) for children is tax free and isn’t means tested. It is for people looking after children under 16 to help with the extra costs of looking after a child who needs supervision or help with their daily or nightly care needs or has mobility problems. They must have had these difficulties for at least 3 months unless they are terminally ill and then you can apply straight away.

For more information on benefits and how to apply see GOV.UK’s website.

One elderly man who we talked to was pleasantly surprised to find that he could obtain Attendance Allowance even though he lived alone. He was also glad to find it wasn't taxed.

 

He was pleasantly surprised to find that he was eligible for Attendance Allowance, even though he...

He was pleasantly surprised to find that he was eligible for Attendance Allowance, even though he...

Age at interview: 75
Sex: Male
Age at diagnosis: 73
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The other thing that happened was that I'd had one or two MacMillan nurses and the first one who came was a lady and she said, 'Do you get any financial help?' and I said, 'Oh no, I don't. I don't think I qualify'. She said, 'Do you get an Attendance Allowance?'  and I said, 'Well, no, because nobody's attending me'. She said, 'No, that is a bit of a misnomer really. You're entitled to apply for some money to help with the bills and get the garden done and I said, 'Oh no, I don't... I'm pretty sure that I shan't... I don't qualify'.  

So she filled in a great form and signed it and she said, 'I'll send this off and if you get a reply which says you don't qualify tell me and I'll reapply'. And I got it straight off. It's very useful money and it's not taxed and so that was quite an unexpected piece of help. Yeah.

So you didn't realise you, you were entitled to it?

No I didn't. No idea.  But it has been useful. I've got two nice ladies who come and do the garden. So that was nice.

One woman said that the Disability Living Allowance had made a huge difference to her and her husband, and another said that her Disability Living Allowance enabled her to pay for someone to do her cleaning.

If a person is terminally ill and not expected to live longer than six months, under Social Security Special Rules he or she can obtain Attendance Allowance or Personal Independence Payment (PIP) immediately, instead of having to wait a number of months. For more information see GOV.UK’s website. claimants will be asked to get and send in a DS1500 medical report to support the claim. These can be obtained from GP's, consultants or certain other professionals including Macmillan nurses.

 

The nurse helped him apply for Attendance Allowance under Special Rules because he was not...

The nurse helped him apply for Attendance Allowance under Special Rules because he was not...

Age at interview: 72
Sex: Male
Age at diagnosis: 70
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Well the first thing was a Macmillan nurse is the one who sort of got the forms out [for Attendance Allowance] and all that and she more or less quoted that for me. Immediately you leave hospital. When you're diagnosed with a cancer like that you're put in touch with Macmillan's and with the local district nurse and they all phone up and find out if there is anything I need and how are things going to be... 

It's very good support you know, a very good support system. And then it was the Macmillan nurse who got the forms and put in for that and she more or less said, it's given when you've not got long to go and then the doctor said to me that I can have it 'I've got to write a letter and say that you're not expected to last more than six months' and it actually says it on the literature that it's a six month expectancy.

Some people did not know that they might be eligible for benefits. Others didn't want to apply for benefits. One man didn't think he would qualify for benefits and said that he hated bureaucracy. A woman who had cancer of the kidney said that she hadn't applied for benefits or chosen to see a palliative care nurse because at the moment she was managing and she didn't want to think of herself as disabled.

 

Explains that he would not like to ask the State for anything and that he loathes bureaucracy.

Explains that he would not like to ask the State for anything and that he loathes bureaucracy.

Age at interview: 59
Sex: Male
Age at diagnosis: 57
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Do you feel in the situation you're in now you've got everything you need? If you think of it from really practical things like financial advice to the other end of the spectrum, what, we talked about emotional support, you're getting that from your family, but there are really practical things like Disabled Living Allowance and things like that. Have you come across all those kind of things?

I don't think I would be eligible.

Don't you think so?

I'm not disabled. Well I'm registered disabled in terms of... because of my back but I don't think I'm eligible for any living allowance. So...

So -

And I wouldn't want... listen if I... I am OK. I don't have wealth and riches but I don't go hungry.

No.

I have never asked the State for it even when I've been unemployed - which hasn't been very long - but I've never asked the State for anything. That's not the way I go.

So thinking -

If I had to I would but... I loathe to the bottom of my boots bureaucracy and that, now that really would make me feel ill.  

Some people had struggled to get their benefits and delays had occurred. One woman explained that if a person is expected to live for more than 6 months, to get Disability Living Allowance that person has to fill in a long form to demonstrate that benefits are really needed. She suggested that when filling in the form people should think about the help they need on their bad days rather than the help they need on their good days.

 

He waited many weeks to get financial benefits and found the process very unsympathetic.

He waited many weeks to get financial benefits and found the process very unsympathetic.

Age at interview: 32
Sex: Male
Age at diagnosis: 31
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I feel on benefits I've waited... I waited fourteen weeks for one benefit. I waited another twelve weeks for another. For what reason I don't know. Why? You explain the reason why you're out of work and it seems to be, 'Oh well, you and like fifty thousand other people'. But I'm not like fifty thousand other people.  

Where did you go to get the information on benefits?

I had to 'phone them.There is... the hospital do give out help for the benefits but it doesn't seem to... they still seem to take as slow as they like, you know. 

Okay, I'm ill. I'm not as ill as some people but I'm a lot iller than some others and they don't seem to appreciate that. They seem to think, you know, everyone's pulling their leg, you know, that it's not genuine. And you fill in forms for this and forms for that. But then, at the end of the day they just don't seem to want to help. You try, you ask them, and it's, 'Oh you can do this, you can do that', and that's it.There's nobody on the other end of the 'phone, explaining to you. You know, it just seems very robotic. That's it, you know?

 

Suggests that when applying for Disability Living Allowance people should indicate what they can...

Suggests that when applying for Disability Living Allowance people should indicate what they can...

Age at interview: 61
Sex: Female
Age at diagnosis: 57
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We've just had another break and we were talking about conditions for getting DLA [Disability Living Allowance] weren't we? 

That's right yes.

Could you just clarify that?

Yeah. As I was just saying the DLA is hard to get and if you are able to walk... without... too much pain for more than say 100 yards then they probably wouldn't allow you to have the mobility, but for care, if you need help basically for everyday living perhaps you won't be able to prepare your food or you may have... 

There's a whole stream of questions in there to come up to that criteria you must really read or get somebody to come and help you with the forms. Try not to fill in anything yourself because a lot of people will put down their good days, and good days normally are not as often as bad days and so one has to really think about what your putting down and basically you've got to put down your bad days. How you are on a bad day. Whether you can cope with things like this every day or not, so I would say, yes but you know get somebody... go and find an advocate. Go to... they do have a helpline number on there but do try and see if there is somebody who will come and help you fill in your forms. 

CAB [citizen's advice bureau] will probably help you and there are organisations around that have advocates that could probably help.

Many people were grateful that their Macmillan nurses or social workers had helped them to fill in the benefit forms. One woman said that her Macmillan nurse 'miraculously' produced the relevant form and helped to complete it. Nurses also helped a woman with myeloma to obtain benefits while she was in hospital. The money she received from her Disability Living Allowance helped her to buy a wheelchair. Some hospitals and some GPs have a Benefits Adviser or Care Advisor.

 

Her social worker helped her to fill in the forms to obtain Disability Living Allowance.

Her social worker helped her to fill in the forms to obtain Disability Living Allowance.

Age at interview: 67
Sex: Female
Age at diagnosis: 56
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And what about... Thinking now about finances and money and benefits. Have you got enough information?

I've got... because the hospice has got a social worker and she helps you with that very much. She's very good so they don't keep you short of money. 

What kind of benefits do people need in your circumstances if you've got to advise someone?

What do you call it there? I don't know these benefits...

Disabled Living Allowance?

That's right. That's a good one because once they give it to you they don't come every month nagging you, you know. They gave me a supplementary what's it called, this one?

Is it the supplementary benefit to the disabled living allowance?

No. I don't have... my pension doesn't pay me enough so they make it up. I forget what that one called...

Is that called income support?

That's right. And every year they come and they nag you like 'you not working', you know? They just nag you and you have to be searching for forms and papers and once I put down anything I just forget where I put it. 

 

The nurses at the hospital gave her advice about Disability Living Allowance, which she found an...

The nurses at the hospital gave her advice about Disability Living Allowance, which she found an...

Age at interview: 56
Sex: Female
Age at diagnosis: 55
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The Macmillan nurse immediately came to see me to talk to me about what chemotherapy might be and what the nursing care would be and was exceedingly helpful. 

Both places were exceedingly helpful in getting straight on to ordering a blue badge for the car so that when your bit of an old crock as I am you have a disabled badge in the car and also benefits that might be available to you. 

I immediately applied for, on their advice, and got Disability Living Allowance, which is not means tested and is an enormous help in paying for the extra help that you need in the house or this and that. I bought a wheelchair straight off and it was about '100. That was an extremely useful thing to have because you need to conserve your energy for seeing friends or going out, whatever, and in the early days when I couldn't walk very much at all because I'd been in hospital for so long that the muscles in my legs rather wasted away, so I had that problem as well as the just general lack of energy and the wheelchair meant I could go out and about and people could come and pick me up complete with wheelchair and take my blue badge in their car and life could go on as near as normal.  

That sort of information was wonderful. I hope all the hospitals give it.

People under 65 who have difficulty walking can claim the Personal Independence Payment (Mobility Component). Motability is a voluntary organisation which helps people gain access to a car, they have more information about the new arrangements as part of the Personal Independence Payment on their website. These people can also apply for a Disabled Badge for parking (Blue Badge Scheme). (For more help see 'Practical Matters - Mobility' section listed in the 'Resources and Information'.

 

Says that state benefits are generous and have enabled him to buy a new car.

Says that state benefits are generous and have enabled him to buy a new car.

Age at interview: 58
Sex: Male
Age at diagnosis: 56
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I've no problems at all really. Financially, I think for being in the state I'm in I think it's pretty generous and I find it's we don't have problems at all like you know. No problems financially like you know.

Can you tell me what sort of benefits people are entitled to?

Well the benefits mainly are the Disability Allowance. You have the Mobility Allowances you know, if you're a driver you know, which is a great thing like you know, a great thing and then you have your general sort of allowances like... I can't recall them now like.  I get about two allowances. They're more than adequate that's all I can say like for our way of living you know. I mean to say we're not extravagant by any stretch of the imagination like. It's afforded us a new car which I needed. That's pretty good.

 

Explains that the charity Motability has helped a lot and has helped him get a car.

Explains that the charity Motability has helped a lot and has helped him get a car.

Age at interview: 52
Sex: Male
Age at diagnosis: 37
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I get Disability Living Allowance. I get the top rate for care because of all the tubes and things that I have inside me.  

I also have a car via Motability which is great because I could never afford to run... I mean everything is done, it's serviced and Motability are very, very helpful. I've got to terminate this one early because since getting the car that I have, I'm using a wheelchair a lot more so we've got to find a place to put the wheelchair so I need a larger car and they're helping me through with that.  

There is a person who comes here once every two weeks to the block who is employed by the charity and they help me with all my benefits and all the other things. I think the local social services could be more helpful than they are.

Some people are entitled to Industrial Injuries Disablement Benefit (see GOV UK for more details). It will be paid, for example, if a person can demonstrate he was in contact with asbestos during the course of 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. (For advice about mesothelioma, see Macmillan Cancer Support).

 

His employers have accepted liability for his exposure to asbestos and he has obtained compensation.

His employers have accepted liability for his exposure to asbestos and he has obtained compensation.

Age at interview: 54
Sex: Male
Age at diagnosis: 53
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In fact, I have got a compensation claim and my employers have accepted full liability for my exposure. But it is one thing that I didn't actually want to start. When I was first diagnosed I think nearly every doctor I saw said that you should be starting to claim compensation, which struck me as a bit strange that doctors were worried about this. I said at the time that I didn't want to be distracted by compensation. 

My head was full of so many things already with being diagnosed with a terminal illness. I didn't want to be distracted from recovery by what I knew could be quite a sort of long drawn out process, but one of the cancer specialist nurses came and talked to me and she said, 'You really must think about claiming compensation'.  And she gave me some ideas of how to go about it and I contacted a solicitor who was recommended to me who deals with industrial diseases. 

He was wonderful. He understood my condition and the thing that he said to me which made me want to go ahead was, he said, 'You have to decide whether you want to claim and get the benefit of compensation while you are alive or whether your widow claims when you are dead'. I thought, well, putting it that way if we can get some compensation it will help us have a better life for my remaining years. In actual fact, it hasn't been a problem at all. The solicitor has been really good. 

Last reviewed July 2017.

Last updated July 2017.

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