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Multiple Sclerosis: friends & family experiences

Financial impact of MS

For many people we interviewed there were financial implications of living with Multiple Sclerosis (MS) when the household income was reduced because of unemployment, part-time working or retirement. A few older people felt lucky to be financially secure because of having good pensions, a very generous employer or, for one person, long term investments which had matured. Sometimes people had financial concerns about how they would manage in the future, when their income might be reduced. Emma, whose husband was in his late twenties, was worried about how they would cope financially if they had children and she had to work fewer hours.

Many of the people with MS had received Disability Living Allowance now replaced by PIP - Personal Independence Payment (which Karl calls, ‘a lifeline’) or other welfare benefits, and some of the people we spoke to got Carer’s Allowance. Many people talked about very high costs of paying for equipment like stair lifts and ceiling hoists or of adapting rooms in their house to meet the needs of a person in advanced stages of MS. Most were not eligible for grants to pay for these things because, as Louise said, ‘the threshold for help is so low.’ Jeff discovered that he needed to apply for the grants to fund any adaptations to the house before the work was done. He found out later that having these adaptations installed might qualify for a reduction in council tax. Some people received a lot of help with rent or house purchase from charities. The costs of full-time care could be very high and a source of conflict with social services or nursing homes.

 

Having a good occupational pension gives Tony financial security, so the loss of Carer’s Allowance when he reached 65 didn’t make that much difference.

Having a good occupational pension gives Tony financial security, so the loss of Carer’s Allowance when he reached 65 didn’t make that much difference.

Age at interview: 72
Sex: Male
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I think I ought to say that I appreciate that I’m fortunate in the sort of job I did gave me a pension and an ability to do things that I want to do to support my wife. I appreciate I’m fortunate. And I made the issue about Carer’s Allowance, but I appreciate that that’s not really an issue. And we can do within our limitations roughly what we want to. And if I need to get something, something material in support then I can do that. I appreciate I’m very, I’m lucky and that there are a lot of carers who are not in my position. And for them I’m, you know, I acknowledge that it’s difficult for them. So I do appreciate I’m lucky. Nonetheless I’d much prefer it if we didn’t have this burden around our neck because we could do a lot of other things that we would have liked to have done. That said, we, I think we’re getting on fairly well within our limitations.
 

Jeff took out life insurance and investments at an early stage of his wife’s MS and, even though he retired early, they don’t have money problems.

Jeff took out life insurance and investments at an early stage of his wife’s MS and, even though he retired early, they don’t have money problems.

Age at interview: 62
Sex: Male
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I think my main concern I suppose is what would happen if something happened to me. So I haven’t mentioned this in fact, but because this had happened quite early in our lives and having done research on MS and you read the worst things it can do, and you have to think, “Well, what would happen if something happened to me?” So I made sure I took out life insurance first, made sure we did a will. And I mean I made myself become something of a financial expert. I swotted up initially through a relative of mine who knew a lot and gave me a lot of good tips actually. But I made some long-term investments, which have recently come to fruition. So financially I’m very fortunate in that respect. But I don’t really have that problem.
Although one or two people didn’t want, or need, to claim it PIP - Personal Independence Payment is an important source of financial support for many people with MS. The process of claiming is not that easy and for some it was off-putting. Betty struggled with the forms at first and several people had claims rejected because they had been too positive about their abilities. Even when a claim was successful, there could be a long wait before getting any money. This wasn’t a problem for everybody, but it was for Betty who was living on savings and the support of her elderly mother. In some areas an organisation called Disability Information Advice Line (DIAL) will give advice on completing the benefit form.
 

Dave explains how the Motability scheme works.

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Dave explains how the Motability scheme works.

Age at interview: 73
Sex: Male
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If you get Disability Living Allowance there is a two components, there is the care component and the mobility component. If you get the higher mobility component you can swap this for a car through the Motability scheme. I think it’s very good, not only do we get an MPV but it is serviced, the tyres are put in, the insurance and the tax is all paid, all I have to do is put fuel in and in three years time, or next week as it’s going to be, you get another car and that’s the way it is and that’s for putting in your Motability component.

And that’s free of charge, free of cost to you?

Free of cost, yes.
 

Although she does not ‘gripe’ about money, Kate is annoyed that nobody has explained the system to them and that they haven’t been able to get a Blue Badge.

Although she does not ‘gripe’ about money, Kate is annoyed that nobody has explained the system to them and that they haven’t been able to get a Blue Badge.

Age at interview: 75
Sex: Female
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And the other thing I found, we had no, we had no financial help at all. I didn’t know until, until we came to live here that you could get, I don’t know what it’s called actually, oh, what’s it called? Whatever they give people as a Disabled Living Allowance. But we never had any of that. And it wasn’t until a friend of ours said, who, who actually was in the RAF, who did something in the RAF, they, they said, “You know, you really could get Attendance Allowance. Have you ever tried for that?” So we did. So we have, we are fortunate, we’ve had Attendance Allowance for 4 years. Which really, but really, Bernard really should have had Living Allowance. But nobody, nobody ever tells you, nobody tells you these things at all. 

We’re lucky, Bernard has a pension. We never consider ourselves, we, our, our, our, obviously all our savings go. We don’t, we can’t save for our old age because we’ve lived on a pension for so long. But we live, we live well, so we don’t complain. But we don’t get anything. 

I’m not griping about money really, because I know it’s short. I do gripe about the fact that some people seem to be able to get cars and things. I don’t know how they do it, but they do it. And they can seem to, here parking is extremely expensive, but we always have to pay for it because Bernard doesn’t have this special, but I suppose it comes with the Disability Living Allowance. 

I do know that when I was talking to a man in the car park, he, actually because I put the wrong money in, I said, “Would you like this ticket? Because I need it for longer.” And he said, “Oh, I don’t have to pay.” He said, “My wife’s got MS, you see.” So I said, “Well, my husband has, but we still have to pay.” And he said, “I don’t understand that.” In any case I didn’t bother to argue because I didn’t, it’s not worth fiddling about with it. So, but actually she walked past the car better than Bernard did actually and I thought, “Oh, well, you know, there must be something in this if they can get it.” But we can’t get it. 
 

Anthony and his wife, ‘psyched themselves up’ to ask their GP about a Blue Badge, but it was all very straightforward.

Anthony and his wife, ‘psyched themselves up’ to ask their GP about a Blue Badge, but it was all very straightforward.

Age at interview: 43
Sex: Male
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Looking back, we should have applied for it before we did. I don’t think there was such a stigma about applying for it as there was for starting to use a walking stick, for example, because it is practically so useful but we held off, for some reason. I’m not sure why and we psyched ourselves up to ask our doctor about it and we had nothing to fear. I don’t know why we built it up to be such a thing. Maybe because we had heard stories that people had had to jump through hoops to get them and our doctor’s reaction was, “Of course. I have people walking through that door asking me for a blue badge when they’re perfectly fit and able. Of course you can have one.” So for us, it was it was straightforward.

And once she’d got one, it did help. Work have been very good in that they’ve allowed her to park in a disabled space for quite some time before she’d actually got a blue badge and then they tightened up the parking and she was told she could no longer use the disabled spaces and it was that that really, I think, told us that we really ought to apply for a blue badge. You know, there’s no reason why she shouldn’t have one. So, but when it actually came to ask for one, the doctor was absolutely fine and he said, “Yes, I’ll sign it off. No problem at all.” And it’s been such a help. It really is. And also, the fact that the spaces are wider in that we have room to open the car doors fully because some car parks are terrible and the chances of my wife being able to extract herself and twist herself round to get out in a tight car parking space, sometimes it’s just not possible. So the fact that you can open the doors wider and have a good chance of getting in and out unrestricted, that helps an awful lot as well.

So, was the application process itself simple? Because I’ve heard people talk about having to do the whole DLA application to get a blue badge.

Right.

Did you have to do that or?

No.

Did you just apply separately? 

We applied. 

For the blue badge?

To the doctor for a blue badge and he granted it. That was that. There was a little form to fill in, not an awful lot. But no, it was absolutely fine. Like I say, we should have done it a lot earlier than we did but, you know, the doctor is very familiar with her case and said, “Sure. No problem.”
Some benefits and grants are means-tested and this meant that some of the people we spoke to had to pay for expensive equipment, like ceiling hoists, or adaptations to their house, like wet-rooms or downstairs bedrooms, themselves. Even though he has a good pension, and savings, Robin has found the costs of caring for his wife have been very high. John is still working and, because he is a builder, has done all the adaptations himself but he resents having to pay for it all.
 

John used his savings to pay for adaptations to the house. He feels that his wife should be entitled to financial help in her own right.

John used his savings to pay for adaptations to the house. He feels that his wife should be entitled to financial help in her own right.

Age at interview: 55
Sex: Male
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In the end it was becoming so difficult to move her around the house especially the toilet, you have to lift her off the chair, when she was downstairs, put her on the toilet downstairs there was a tiny toilet. I had to take time, I couldn’t just do it straight away she has to be relaxed certain things like that and then help her off the toilet, clean her, pull her pants up, wash her sometimes. During that time about six or seven years ago I adapted the bathroom upstairs so she can climb or come near the shower, got rid of the bath and put a shower tray, a low shower tray so she can step over it. It became a little bit easier just for a short while, afterwards it was becoming very difficult to lift her from the wheelchair into the shower cubicle so we decided to extend the house downstairs to have her own bedroom and her own walk in shower and I didn’t get any help from the government or the local council because I was earning, I was working I was earning more than £17,000 a year and that doesn’t entitle my wife. And I resented that because I said why do I have to pay for it, I’m not asking for the help my wife is asking for help, we worked all our lives we’ve never been out of work, we pay our taxes and things like that so I resented having to pay but I had to do it in the end, I had to do it. So with the few savings I had I decided to start building the extension because I’m a builder myself. It took me about three years to finish, not even completely finish because I haven’t got a floor yet.
 

Robin warns to be prepared for substantial loss of income and high expenses if ‘the disease gets very bad.’

Robin warns to be prepared for substantial loss of income and high expenses if ‘the disease gets very bad.’

Age at interview: 72
Sex: Male
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I think having talked about money a bit I’d better say that one thing you’ve got to be prepared for if you’re a carer for someone with MS is your income going down quite substantially. I mean first of all you probably won’t be able to hold down your job if you’re a full time carer I had to give up my job it was only a part time job because I couldn’t manage but that was £10,000 a year income off xxxx. There are things like the converted vehicle which cost about £4,000 more than a normal vehicle and all sorts of gizmos. There’s a thing called Lifeline which consists of a lanyard you hang round your neck and you have a connection to a distant call station where if you have a fall you just push the button on your lanyard and they come on the line and say 'Are you alright?’ and if you say ‘No I’m not, send paramedics round,’ they send the paramedics round. So what you do then is you install what you call a wall safe outside the front door and you put your key in it and you tell the Lifeline people what the code is so that the paramedics can let themselves in even if you’ve collapsed somewhere in the house and can’t get to the front door to let them in. It’s a wonderful thing for the carer because it means you can go out for half an hour without driving yourself potty wondering what’s happening to the person you’re looking after. 

And other expenses are for instance that if the disease gets very bad you’re probably going to have to bring whoever it is downstairs because they can’t get up and down the stairs anymore, that’s another expense by the way, stair lifts. they can’t get up and down the stairs anymore even on the stair lift so we’re in the process of having the two downstairs rooms, two of our downstairs rooms converted into a bedroom and a wet room for my wife. It’s going to cost me about £25,000 and there is no grant available for this because I own my house and therefore I’m a rich man aren’t I? 
Some people on low incomes received help with their basic housing costs. Although living on benefits is not easy for Mike and his partner, he says they ‘are lucky’ to have their rent paid by a housing association. Patience and her husband live in a house which was bought for them by a charity which supports people who have been in the armed forces. 

The costs of full-time nursing or residential home care could be very high and were sometimes a source of conflict. Patience’s husband was admitted to a nursing home when he had a pressure sore. He stayed there longer than intended, leaving Patience with a bill of £8000 which she did not want to pay. Eventually, with the help of solicitors, her MP and a professional advocate, along with her own determination, Patience persuaded the social services to cancel her debt. 

Kay Z has been in dispute with a local council over the costs of her brother’s care, in particular over whether she should be forced to sell a house which she partly owns to pay his care home fees. She is glad to have found a solicitor who is an expert in this field but wishes she had taken legal advice sooner. She has had to, ‘stumble my way through trying to understand the care system, trying to understand the rules, what we’re responsible for, what we’re not responsible for.’
 

Patience felt strongly that, because health professionals recommended that her husband go into a nursing home, she should not have to pay the costs.

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Patience felt strongly that, because health professionals recommended that her husband go into a nursing home, she should not have to pay the costs.

Age at interview: 44
Sex: Female
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That week I got a letter from a solicitor, it was social services’ solicitor. They said that we owed the nursing home over eight thousand pounds. .I just left the letter but after speaking to a couple of people they said, “Go to Citizen’s Advice Bureau and seek advice.” I went to Citizen’s Advice Bureau but they did not want to know [laughs]. So what did I do? I spoke to several people, who gave me some solicitors to go to, and I went to them. They didn’t want to take the case on because the letter was from the solicitor from social services. So I took the courage and I phoned the solicitor and I said to her, “You don’t know what you are dealing with but if I were you, I would just drop this case.” And she thought I was joking so I got my MP involved.

While my husband was in home, we had to call many meetings with the head of the local authority, and with the MP about the payment of my husband’s stay in the nursing home. So I just said to them, “I didn’t make that choice for my husband to go to the nursing home. I did ask for help. All my concern was for my husband but they were supposed to put twenty four hour nursing care at home for my husband and nothing was mentioned.” So I said, “I didn’t put my husband in a home. You people decided, therefore, pay for it.” And in the end, you know, even my MP got a bit scared because the local authority, the managing director, they came here. They asked me to come to a meeting at the local authority. I said, “I’m not going. I haven’t got anybody to care for my husband and my husband needs to be at the meeting.” So they came to my house and then they said, “Well, if anything happened and you go to court with the local authority, and we lost the case, they’re going to take my husband’s war pension to pay for it.” And I said, “I’d rather to court and I’d rather go to jail with my husband to prove a point.”

So my local MP, said, “Oh, Patience, I don’t think this is wise or advisable.” And I said, “Well, I am going to do that because, you know, everything concerning this situation is their fault and I want them to admit it but it seems that nobody wants to and I refused to pay the money.” I had to write a lot of events that happened at the nursing home, which was why I refused to pay the money because my husband’s care at the nursing home wasn’t good. While he was there he had an MRSA. I wasn’t told. A lot of things, his eye drops were put on the radiator, on top of the radiator, whereby it needed to go in the fridge. In the nursing home he got MRSA and they said they can’t have and that they did not put his eye drops into the fridge. So, I think it was negligence by the care staff.
 

Kay discovered that finding out who should be responsible for paying her brother’s care home fees was very complicated.

Kay discovered that finding out who should be responsible for paying her brother’s care home fees was very complicated.

Age at interview: 38
Sex: Female
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Shall I talk about care and funding?

I mean this is still going on. But after, well, just bef-, when my father got quite sick I’d never really looked at sort of the legal situation and if someone needs to go in a care home how that’s paid for. My parents made their will in the 90s when both my brother and I were both healthy and well, showed us the will, s-, “Left to both of you. You know, if you’re not around, your cousins, and so on.” Basic, standard will. Well, I think it was probably left to each other, and then us. When my dad was getting sick we had a conversation about if [name] had to go into a care home and worrying about my parents’ house and whether that would have to be sold to pay for [name] care. My dad immediately said, “Call the solicitors. I’ll change the will. I’ll sign everything over to you.” 

So I phoned the solicitors, who said, “No, we can’t, we can’t really do, we can’t really do that. But what we can do is set up a disabled person’s trust. So your brother’s part gets left in a disabled person’s trust. And that will protect that, any equity or money from being paid for, to be used to pay for his care. And this money would then be for anything he needs other than that.” And I thought, “Well, that sounds great.” So we made an appointment. Unfortunately my father passed away two days before the appointment was supposed to happen. 

So we went into the situation with the will as is, being left to us in equal shares. My brother’s social worker immediately after we discussed the whole [name] going into a care home situation was like, “Well, you’ve, you know, the house will, you know, have to be sold.” I was quite upset about this. I was like, “It’s half my house too.” And I’d started to do a little bit of research about this and said, you know, “I don’t think you can force me to sell my parents’ house if I don’t want to.” 

Not a lot more was said for a little while, because I think there was a feeling then, once it became apparent about moving to London, that “if it was [name]'s choice to move to London” and those were the words, that the council that he was under would not be responsible for his care anymore. So, you know, “You’d have to go off and do your own thing and it’s nothing to do with us anymore.” The home that my brother was in as a temporary respite, there was a key worker there who had another client who had moved, not as far away, but to another borough and found that, “No, actually that’s not true. And you would be responsible still as the home council, even if you choose to live in another council.”

I wish that I’d taken legal advice, you know, before that point. Because I’ve had to stumble my way through for quite a lot, quite a lot of the first year I stumbled my way through trying to understand the care system, trying to understand the rules, trying to understand, you know, what we’re responsible for, what we’re not responsible for. 


Last reviewed March 2020.

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