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.
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.
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.
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.’

Last reviewed July 2018
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