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.

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.

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.

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.

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 on practical matters.

Last reviewed August 2017.
Last updated
August 2017.



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