Many of the people we talked to had found it difficult to continue work because of their pain. Expectations and plans often had to be drastically revised, which left people feeling frustrated and disappointed (see also ‘Unemployment and return to work‘). These interviews were conducted before the 2015 benefit changes but a lot of the issues are still relevant today.
Reflects on how her life differs from what she had expected it to be.
Had to give up his well paid job and now has to be very careful with money.
Some people who had been in long-term employment received full pay from their employers for the first 3 months they were off work, then half pay for the next 3. One woman described the good sickness pay arrangements at her work while another, who had never had a paid job, explained that she was not entitled to some government benefits.
Her company has a good sick pay policy and she has a good salary but chronic pain still affects…
Has not worked so is not entitled to incapacity benefits but claims a top up disability benefit…
People who are declared medically unfit to return to work after 6 months may transfer to Employment and Support Allowance. For a person to qualify for Employment and Support Allowance a Work Capability Assessment needs to be carried out where you have to complete a questionnaire about how your illness or disability affects your ability to work and can include a medical assessment.
People under the age of 65 who need care and attention may qualify for Personal Independent Payments (PIP), while those over the age of 65 can claim Attendance Allowance. These benefits are not means tested and may be claimed by people who live alone, find it difficult to do domestic tasks, or look after themselves.
People under 65 who have difficulty walking may also get the mobility component of PIP if they need help with going out or moving around. These people can also apply for a disabled badge for parking (Blue Badge Scheme). Motability is a voluntary organisation which enabled some people to run cars, which made a big difference to their lives.
Claims mobility allowance and uses this to keep his car on the road which has made a big…
Many of the people we talked to said that the process of claiming benefits had been difficult and in some cases distressing, demeaning and degrading.
People sometimes felt that they were suspected of being ‘malingerers’ or ‘frauds’ and stressed that they really wanted to be able to work and that benefits should not be seen as ‘charity’. Completing the forms could be difficult and time consuming and the medical assessments could be traumatic, although a few said it was less unpleasant than they had expected.
Says that some people who claim benefits worry about being thought of as a ‘malingerer’ but she…
Had to leave a well-paid job and was initially reluctant to claim benefits. He finds the…
Had a home assessment for her benefits which she found demoralizing and painful.
Had a home assessment for Disability Living Allowance which she said was quite personal but not…
Some people found the focus on walking bizarre. Or pointed out that the way that the system is designed disadvantages people who aren’t willing to focus on the worst aspect of their disabilities. Many disliked having to answer questions about their ability to perform personal care and hygiene tasks.
Applications are not always successful, although several eventually succeeded after an appeal. Some suspected that that, in their area, benefits were never awarded until after an appeal.
Some had avoided claiming for as long as possible, using savings and hoping that the problem would resolve. They didn’t advise others to do this, as benefits often cannot be backdated. Many felt angry and bitter that they had found it so hard to find out what they were entitled to: several had only found out about benefits by chance, or through friends or family who worked in the system.
Put off claiming benefits because he believed he would get back to work but now regrets using up…
Several people that we talked to were working but are registered disabled and told us that they were entitled to some financial help including benefits, working tax credits and mobility allowances. One woman recommended looking up information on the internet. Others had found out about schemes through the employment agency return to work schemes.
Apart from the loss to household income, people described many other financial consequences of their illness. Prescription costs mounted up – those who use more than 4 prescriptions in 3 months are advised to buy prepayment certificates.
Says that prescription charges can mount up but found out about pre-payment certificates which…
Some paid for their own medical treatment or complementary therapies, other costs included buying special furniture and mattresses, having to take taxis, having groceries delivered, and paying for other people to do jobs in the house.
One man said he regretted having to hand back all of his credit cards. A few had calculated the cost, in terms of lost income and additional expenses, as many thousands of pounds.
Loss of income also meant that people were unable to participate fully in a social life, especially with friends who had jobs and a comparatively comfortable life. Often families and friends were generous in subsidising social events, or even in helping with bills or medical expenses.
Several people stressed that mortgage lenders and utilities companies would be likely to accept repayments over a longer period, and it was better to talk to them than take out more loans and get further into debt.
Some had needed to claim settlements because of accidents or industrial injuries. One man was able to pay off his mortgage and have a couple of good holidays, but pointed out that it could not compensate for his lost income.
Received a settlement after an accident but feels nothing can replace his lost income.
Another found that when he eventually won his case he had to repay all of the benefits he had received. A woman who had claimed after an accident said that it could be more trouble than it was worth. All those who had been through litigation advised getting independent advice first.