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.
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.
Dave explains how the Motability scheme works.
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Dave explains how the Motability scheme works.
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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.
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.
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.”
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.
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.’
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?
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.
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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.
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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