Motor Neurone Disease (MND)

Finances and benefits

Many people talked about the bewildering array of welfare benefits and funding from other sources which people living with MND could claim. Benefits include: Personal Independence Payment, Employment and Support Allowance, Income Support, Tax Credits and Universal Credits. Grant funding may be available from Social Services, the MND Association, Access to Work and Motability for specific aids and adaptations.The MND Association provides a range of information sheets on benefits, entitlements and working with MND. They also have a Benefits Advice Service for people with or affected by MND.

People described two key problems in claiming financial support' firstly, finding out what is available and who is eligible to claim it, and secondly, filling in long forms and dealing with bureaucracy. Some people only found out by chance from friends or people they met at support groups that there were benefits and grants they could claim. Others felt well advised by the MND Association, social workers, hospice welfare staff or Citizens Advice. These staff or organisations often gave valuable help in completing the forms, which most people thought were needlessly complicated. Only a few people said they had no trouble filling them in.

They met a social worker on the day he was diagnosed. She organised claims for Disability Living Allowance (now Personal Independence Payment) and Carer's Allowance without them even realising.

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Age at interview: 60

Sex: Male

Age at diagnosis: 57

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I mentioned earlier that one of the people we saw at that initial visit was a social worker, who at the time got us to sign two forms. When we came away, we hadn't got a clue what we'd signed. And in actual fact the consultant that we saw had been instrumental in getting MND recognised as a' illness which qualified for Disability Living Allowance. And that was one of the forms I signed, and my wife actually signed a form for a Carer's Allowance. So yes, we have made benefit from what is available to us. Other benefits that have become available is we get a free pass on the M6 Toll Road [laughs], which is great.

Wife off camera' And your car tax.

And road fund licence.

Oh right.

Yeah, that is free.

He was glad to have help from Citizens' Advice in filling in the forms. Waiting for claims to be processed can take a long time.

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Age at interview: 58

Sex: Male

Age at diagnosis: 56

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One of the things that one encounters when one has a condition like this is a huge amount of paperwork. And, and I was interested to see in a recent television programme that the, they, they, they said which of the various government forms were the, considered, generally considered to be the worst ones. And one of them it turns out was the Disabled Living Allowance form, and another one was the Carer's Allowance form. Both of which are quite important when you have a condition like this. We filled in the Disabled Living Allowance form ourselves initially. Which, you know, even with a university degree and so on and so forth was really quite hard work. It was about, I can't remember, it was about forty pages, something like that. When it came to getting the higher level, the highest level of the, oh, dear, what is it called? 'Attendance Allowance, we were offered, it was suggested to us that we should bring the Citizens Advice Bureau into it, because they had people who knew these forms pretty well. So anyway we contacted the CAB and somebody came out and helped us. But they really were very good. That actually speeded things up quite a lot. Certainly saved a lot of sort of scratching of heads and sort of wondering what the best answer was. Now again the Carer's Allowance form is over thirty pages I think. So anybody who doesn't like filling in forms, they would probably be well advised to consider their local CAB, who will usually have somebody who is very familiar with the forms. I think that's probably all one needs to say there.

Has there been any, and actually getting the Disability Living Allowance, did that come through okay finally?

Yes, it took I think about six weeks maybe, something like that, for the Disability Living Allowance, for the, for that to come through. So you do have to be prepared for that. It does take time. And I think the same is true of things like the Carer's Allowance. These things don't happen instantaneously. Although obviously providing you make sure that things are properly time-stamped when they go in, you should get everything backdated.

And have there been any other financial implications from your illness?

I mean I suppose I'm fortunate enough, fortunate enough to have quite a, quite a well-paid job. So on occasion we've bought things ourselves rather than going through the system and sort of waiting a long time to get it. Of course not everybody has that option. But on the other hand, on the other hand things like, we, we converted a utility room to a downstairs shower room with special facilities for me. We, we could have gone through the sort of local authority support with that. But we, we, we worked out that in fact the cost really wouldn't, when you looked at what I was earning and so on, we would probably not be getting much help for it anyway. So there was little point in hanging around waiting for it to come through, since it could have taken six months to get. So that was another of the things that we paid for ourselves.

It was difficult to get advice about benefits. He was assessed for Disability Living Allowance by...

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It was difficult to get advice about benefits. He was assessed for Disability Living Allowance by...

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Age at interview: 76

Sex: Male

Age at diagnosis: 61

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I did have a little trouble at the start. Again, I felt that there was no-one to really advise you. I mean, I went for quite a long time not getting any money for my wife until this girl rang up one day. And this was after several weeks - well, months, really - and I mean it did make quite a difference getting the extra money. But as far as I know I'm getting everything I'm entitled to now.

But it was waiting for somebody to tell you?

Yes, and there was no-one sort to come along and say, 'Well, this is what you're entitled to.' Really you have to depend on the Citizens Advice rather than some sort of troubleshooter come to see you and say, 'Well, yes, I can see what you're like and you should getting this and you could get that, and this is what you're allowed'. It took a long time.

I had to go to another GP who didn't know anything about me, who was a retired GP, and he had the say-so whether I got disability living allowance or not, which I thought was ridiculous' They had all these people to refer to, and yet I was sent to see this retired GP, who had never seen me between the eyes before, and that was the consultation, which took about thirty minutes. And I thought there was any amount of any information about me without having to do that. Fortunately he was a very understanding man, and he said, 'As far as I can see you're minimising your problems.' He said, 'You must understand that I deal with a lot of people who are maximising their problems'. And he told me there and then that he would - he said, 'I shouldn't tell you this but I'm going to put down that you should have your disability living allowance.,' which I thought was very nice, but at the same time I didn't think it was necessary. There was any amount of information available but I suppose if that's the way the system works.

There are different rates of benefits, depending on each person's level of disability and dependence. Some people said they had made the mistake of being too positive or optimistic in what they put on the form, and as a result were given lower levels of benefit. One woman explained she had to reapply to get a higher level of benefit as her symptoms progressed. The MND Association recommends providing as much detail as possible on relevant claim forms, about the impact of the disease on the individual. For example, how long tasks take (such as getting dressed) and how much support you might need during each task. This level of detail may help get the level of award required.

A friend helped her with complicated benefit claim forms. She advises people to be realistic...

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A friend helped her with complicated benefit claim forms. She advises people to be realistic...

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Age at interview: 39

Sex: Female

Age at diagnosis: 38

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I was very lucky. A friend of my mother's actually assisted elderly people with attendance allowance, and the carer's allowance form was very, very similar. And so she assisted me with it. But as you say, how most people fill these forms in I don't know, because there's myself, my sister and the lady who helped and it still took us five hours to fill in the form. And you know, this is someone who is quite articulate, and so how other people cope I don't know' And then they only gave me the lower rate allowance so when I became increasingly ill I asked if I could re-apply and I had to complete the entire form all over again. So it's not easy, and lots of people don't like to put down when they're at their worst, because you don't like to be negative. You always want to be positive. 'Oh well, I can do this on certain days,' but unfortunately if you do that on the form then you're going to get penalised, so you have to write down what you're like on your worst days, otherwise then you won't get far.

I have known a lot of people with MND to be turned down and I think it's a shame because I think if you've got terminal illness it should be enough that you write the diagnosis down and that it's confirmed by your consultants that you have that disease. But unfortunately it doesn't work that way. And the system can be quite frustrating.

Several people felt a diagnosis of MND should automatically qualify for certain benefits and grants, and found it distressing that they needed to persuade people they were eligible. Adaptations to the house and equipment required to maintain quality of life are expensive. Given the uncertainty over how fast the condition might progress, people were upset by having to wait for claims to be processed. Several people advised others to apply for benefits as soon as possible after diagnosis.

Many decided to pay for their own equipment or home adaptations rather than wait - but some said it was hard to find reliable and detailed information about suppliers, and to find out about prices. As one woman said, “It's very expensive being disabled.” Often people thought it was wrong that means-testing meant they were not eligible for some funding, which they felt penalised them for having saved for their retirement or owning their own house. Others felt lucky that they had enough money to afford what they needed and were conscious not everyone was so fortunate. One man was thankful he had permanent health insurance which pays his salary and meant they could keep their home and afford holidays.

He is bitter that he had to pay for many things out of his own money. Social services should give...

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Age at interview: 45

Sex: Male

Age at diagnosis: 42

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The people who could do more is Social Services and, you know, the fact that we've, like, received no financial help. I mean, it absolutely staggered me, to be honest. I couldn't believe that that was what could happen. And you know we've had to pay 30, '35000 and that's before we started considering the loss of earnings that I'm going to suffer now that I've finished work. How, and that my wife might suffer if she has to finish work to look after me. There's a huge financial thing, you don't get any help with it. And it's like, well what have I been paying taxes for, then? So that, and, and it isn't just the money, although the money's obviously big, it's the fact that you feel abandoned, you know. You go to all these people and they say, 'Well we can't really help you'. You know, and it just, you, you sort of think you're living in a really wealthy society and everybody's getting on and doing things and so on, and you've got this illness which you never expected to happen and you don't know why it's happened and nobody can do anything about it and they don't give you any help. You know, they just let you sort of fall by the wayside and you can feel, you can feel quite bitter about that. And it can make you feel quite lonely. And I think it would add to the depression that people sometimes have with motor neurone disease. The fact that people aren't helping. So, I think Social Services could help more. Instead of just giving advice they could give more money and pay for more of the stuff that people need. But I don't think that's going to happen [laughs]. But that's what, that's what would really make a big difference.

Hmm.

And, and for the people that, that, you know, do get the financial help, because they've kind of, on the means test they get, they get the help, then they need things faster. That's the other thing. It, for instance like wheelchair services, their, their sort of timescale of doing things just doesn't fit with a person with motor neurone disease. And they, they, they sort of go along the lines of, 'Well, let's see what you're like now,' and you say, 'Yeah, well I'm like this now, but I know that in the future I'm going to be worse.' And they don't seem to want to take that into account. And I think it would be pretty helpful if they did do that, so instead of waiting until you can't walk before they'll give you a wheelchair they should give you one straight away. Because you're going to need it anyway. It's not really costing them any more and it would make you feel so much better that somebody was stepping in and helping out. So, so I think those things would be good.

OK. That's something you've got to sort out yourself.

Yeah, and, and that when you try to sort it out yourself you sort of interact with these bureaucracies that have got their own rules and the rules aren't really made for motor neurone disease. You know, they're sort of, they're made, you sometimes feel like the rules are made for people with a disability that is static. So they can take quite a while to figure out what kind of wheelchair you want and to order it and to get it for you, and to assess this and to do that, and you haven't really got that sort of time.

Means-testing is unfair. He'll miss years of pension, and worries about his wife's financial...

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Age at interview: 60

Sex: Male

Age at diagnosis: 59

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But certainly the means-tested part of it I think is unfair. And I say it's unfair for two reasons. One, we probably contribute more as higher wage-earners than other people. So we get a double whammy because we've paid more during our life contributing. And I don't resent that. But the other thing is, because we're on a terminal illness, all the pensions we've accrued through our life we now have to take, because we're only going to be here for another year or so. So it's pointless them sitting there and actually going to waste in real terms. So the only form that you can take it in is the biggest lump sum that you can get and the smallest pension. Because, you know, that's the way you're going to maximise the benefits from your lifetime of, of devotion to your old age. And of course immediately you do that, you put yourself out of every allowance that God ever gave you in terms of things. So if I had no money, I could have a wet room. But because I've got money, I have a chairlift, a bath lift to get me in and out the bath. And we struggle, you know. And it's that sort of thing. So it's a double whammy in real terms.

What are the other means-tested things that you?

The other means-tested things that you come up against are allowances and, etcetera, living allowances and things like that. Anything that requires you to be below - because I get pensions then I'm not entitled to those sorts of things, and what have you. But it's all right, you know, you can sit there and probably people listen to you and say, 'Well, he's only got a year to live. What's he bloody worried about?' My wife's going to be here for another thirty years. You know, that money's hers, and she's got to live on that money for the next thirty years. You know, that's our future, not my future - our future, and it was always deemed to be our future. And I can't waste it, you know, because I'm coming, you know, in the last sort of year or so of, of what I've got.

What about equipment and so on? Have you had to pay for other bits of equipment yourself? Or have they been provided?

General equipment that looks after me within the confines of the house has been provided, which is very good. No fault there, brilliant. In terms of mobility, I have a Motability car. I bought a scooter, the electric scooter things, off the Internet second-hand. And I got a wheelchair that we bought from Argos, which is the best place to go for them. They're brilliant quality and '200 cheaper than anywhere else. Go to Argos. And I was told that by a girl at the Motability shop, and I won't say who [laughs]. But brilliant value. We wanted a, a lightweight wheelchair that my wife could manage, particularly as we were going abroad, that we could take on the plane and what have you. And we went to Argos and got it on recommendation. Absolutely superb. They do a wonderful range of disability products. So look in your Argos catalogue.

I never knew that. That's amazing.

No. It's phenomenal, the products they do and, and the value. You, I mean if you go to - one of the things I, I found was that, not everywhere, but the majority of places selling disability products, particularly on the Internet, which is where you would get the widest choice, they never tell you what the price is. Every time we've rung up for a quote for something, the first question they ask me is, 'Do you have a whatsit, a grant?' or whatever it is, you know. 'No, I'm paying for it myself.' And the price immediately rockets, because you go outside of the two and a half or three thousand, or whatever it is might be, the, the grant situation for something. I mean we started with a, a wet room, that was '800 for the tray and the sides. To install it in my bathroom, by the time we’d finished, was £6,000. You know, we had no comprehension. Obviously we, we can’t afford that sort of money, to go ahead. But that’s the sort of thing. If you go and look on the Internet for a, a chair, or a scooter, you will get a price that is their recommended retail price, which is far away and above, but mostly no prices at all. “Contact us.” Then they look at your background, the registration number of your car, what sort of house you live in, you know. And I, I honestly, that’s my honest belief, that it’s priced according to your ability to pay, not to the product. And I think the more Argoses that get involved will bring the price down. And I’ve even seen it on shopping channels on the television that they do similar products. Because it’s so expensive to be disabled.

She felt direct care payments were too much paperwork. She hates the benefit system and having to...

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Age at interview: 45

Sex: Female

Age at diagnosis: 37

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They did ask me to go on direct payments for my holiday, short holiday break. But when I got all the rigmarole and paperwork, and then I, it was at the time that I fell and broke my hand, and I kind of rang my social worker up and said, 'Look, just book wherever it's disabled access and sort it out.' Because I really couldn't be bothered with it all. You've got to open up a bank account and then you've go to do all the auditing at the end of the year, and I don't really know anybody else that's doing it. But my theory as well is I've got enough on my plate. And no disrespect to my social worker, she's lovely, but that's what she's paid for. And it was kind of, it's a, it's a hassle I really don't want. And I know that if you go on direct pay, payments for care, you have to do the interviewing. And, and I, I'm not very good at, at that sort of thing. I, I'd be frightened that they'd be the wrong person. You don't know that until you - whereas coming from a care agency they're police-checked. And that's all done, done for you.

So you'd rather just delegate it to them?

Yeah.

Yeah. And in terms of finances, since, having to give up work and be dependent on benefits, how has that affected the family financially?

Hugely. I mean, it's just, a, a lot of it's me, because I've never been - I've worked all my life. So to suddenly find myself relying on state benefit is hard to accept. And, and if I could work, I would work. I'd rather not be on them. But there's just, they're barely enough to scrape by. And if I didn't get my Disability Living Allowance I would have to sell, because the Disability Living Allowance pays my mortgage. If I was in rented I would get my rent paid. But you don't get all your mortgage paid, and you only get about £80 a month help. The rest of it I have to find. So luckily I have got DLA, in order to have my car and my mortgage. And maybe if the children were older - you see, I can't go into sheltered, because you can't take your family. And so I've got to try and keep this for as long as possible. And hopefully so long as the children have, want a home here then - if they up and left I would probably have to rethink. But while it's their home, I'm, I've got to try and keep it. But it isn't easy having to rely on benefits and constant form filling in.

And I don't know at what point they think that somebody who's terminally ill's circumstances are going to change, but I repeatedly get letters and forms to fill in. And one of the hardest ones was I got a phone call saying I had to go for a Jobstart interview. And I kind of said to the girl, 'Well, look, there isn't really any point. If I could do a job I would.' But I explained my circumstances. And she said, 'Well, if you don't come you'll lose your benefit.' I said, 'Well, I'll have to lose my benefit, because I haven't got the energy to come up there for an interview. And I'm not eligible for work. Can I speak to your boss?' 'No, you'll lose your benefit.' And eventually, after being on the phone all day, I got in touch with somebody higher up, who said, 'I'm really sorry, but you will have to come back next year. I'll tick all the boxes now, but you will get recalled.' And you couldn't, so every year I've got to go through it and, 'Nothing's changed.' And actually I'm worse off physically now than I was a year ago. And, and the last time they did it I jokingly said, 'Well, if I'm dead in a year's time that will save us filling in a form.' [laughs].

But you just get so frustrated. And then when I hear people that are on benefits claiming this, that and the other and seem to - I think, 'Well, how on earth do they manage? What am I doing wrong? Why am I barely making ends meet and yet you seem to be able to go on holiday?” And then you think, “No wonder people get angry with the benefits system.” It seems to me that the people who need it the most - because one of the things they did, the minute my son reached 18 they took £40 a week off us, because I’m now classed as having another adult in the house. And I got that because I was disabled. Well, I am still disabled. He’s actually working, but out of the house more, and I’ve upped my care package to compensate for that. But that’s what the law says. And I could understand it if I had, say, a partner living in, but he’s my son and it’s not his job to support me. And that’s what I find hard to swallow, that my children are actually having to subsidise and support me, in order to keep the property.

The direct payment scheme enables people to employ their own paid carers. One woman decided to ask social services to organise her care instead, but others preferred the independence and control of direct care payments. This is discussed in more detail in 'Personal care and care support'.

People who depended on benefit as their only source of income could find it very hard making ends meet.

He finds it hard to live on the benefit he gets, and his mum has to help him out financially. He...

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Age at interview: 24

Sex: Male

Age at diagnosis: 23

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So do you get, do you get benefits, do you get DLA?

Yeah I don't get enough to live on, you know. My mum sorts me out a few more quid. There wasn't nothing to do for me, you know, so I just get out.

Do you get Disability Living Allowance?

Yeah. But it ain't enough, because I got all my bills to pay and all that out of that as well, like, you know. I've got a hundred quid like my cable and that, I gets a hundred, hundred quid a, I've got to pay a hundred quid a fortnight for bills and that you know? Because that puts a dent in it already like. I don't get a lot. I should get more really, because they don't know. A blind man yeah? Now I'm not, no disrespect to a blind man, yeah? But he could do stuff what I can't do, if you know what I mean, like, you know? I'm glad I got my hearing and my sight but, you know, I'm limited to what I can do and I expect he is. But at least he can feed hisself and, like, move his arms, whereas me I can't, you know what I mean? And they said, 'No you don't fit into a category.' So fair enough and that's why I look at like, you know, there's stuff what he can do and there's stuff, you know, what I can't do.

For more experiences of getting financial help see sections on 'Work and career' and 'Aids, equipment and adaptations'.

For more information on benefits and financial support see our resources page document on practical matters.

Last reviewed August 2017.
Last updated August 2017.