People with chronic illness may experience financial hardship. Some people we talked to had given up work or reduced their working hours because of illness and so earned less. Some received a pension because they had retired due to ill health (see 'Work'). Chronic illness can have various cost implications. Many people talked about the cost of medication and those regularly taking several types of drug had found it more economical to buy a pre-payment voucher. Some people had purchased special equipment for around the house e.g. bath lifts, riser chairs, handrails and sometimes had to replace things they already had e.g. a higher bed or sofa, a walk in shower or had bought a microwave oven to make things easier. People had to be paid for ironing, cleaning and gardening which were additional expenses. Living alone could add to costs e.g. a few women had to pay for a hairdresser to visit to wash their hair.
Transport costs invariably increased. Automatic cars with power steering, taxi fares and air travel rather than train travel were all mentioned. Shopping for food at local shops rather than supermarkets, having groceries delivered and buying specific clothes and shoes added expense. One woman summarises the additional costs she experienced. Social outings to theatres cost more as the expensive seats are downstairs and people with a disability are often charged a higher premium on holiday insurance. (See 'Personal life and changes to the home', 'Mobility, driving and transport'.) Extra money was also spent on complementary treatments and food supplements (see 'Diet and food supplements' and 'Complementary and alternative approaches').
Help from Social Services
Sometimes social services can help. People can contact social services and request a Health and Social Care Assessment. A social worker then visits and decides what equipment or services are needed and works out a 'Care Plan' - a written statement of a person's needs. Some people are given cash payments in lieu of social care services. These 'Direct Payments' are made to people who have been assessed by social services as needing assistance. One woman explained how the Direct Payments scheme helps people to make their own decisions about how care is delivered. Another young woman said that she had had to pay for most things herself but that social services had paid for a bath lift, a special chair that lowered her into the bath. Financial help may come from other sources too. An elderly man said that the local council had borne most of the cost of adapting his house.
Government benefits
Many people with chronic illness are entitled to one or more government benefits. Statutory sick pay is usually paid during the first 28 weeks of sickness (not for the first three days) to people who earn more than the minimum (£97 per week in June 2010) For current rates see Directgov. Employment and Support Allowance is usually paid after Statuary Sick pay has stopped. A woman we interviewed found this benefit invaluable and wished she had known about it sooner.
In order for a person to qualify for Employment and Support Allowance Incapacity Benefit a Work Capability Assessment needs to be carried out.
Directgov explains what this involves:
“After your initial claim for Employment and Support Allowance, you have to complete a questionnaire about how your illness or disability affects your ability to complete everyday tasks.
Your own doctor may be asked to provide a medical report.
An approved healthcare professional will consider the questionnaire and any medical reports, along with any other information you may have provided.
If the approved healthcare professional feels that the DWP will need more information to make a decision on your benefit claim, they will recommend that you attend a face-to-face medical assessment.”
For more information on Employment and Support Allowance see Directgov’s website.
For a person to qualify for Disability Living Allowance a form (DS1500 Report Form) may be used to support a claim. A doctor has to complete a DS1500 Report Form and may have to examine the person to see whether or not s/he can perform certain tasks. Several people we interviewed objected to certain aspects of this process. One young woman found doctor's examinations 'most dehumanising' while another thinks that the qualifying process is fair and that the assessment ensures that everyone gets what they are entitled to.
Some people were reluctant to apply or delayed applying for benefits because they didn't feel they were that disabled or they thought they would get better or were used to earning their own money. Some people said that they had not been awarded benefits because they had been assessed on a good day and not on a day when symptoms were bad.
People younger than 65 who need care and help may be able to claim Disability Living Allowance (Care Component). Those over 65 may claim Attendance Allowance. Those living alone who find it difficult to do domestic tasks, gardening or look after themselves because of pain or fatigue, may also qualify for these benefits.
People under 65 who have difficulty walking can also claim Disability Living Allowance (Mobility Component). People who receive this can also apply for a disabled badge for parking (Blue Badge Scheme). These benefits are not means-tested ie. do not depend on existing income.
Motability Scheme
An independent organisation, Motability helps people gain access to a car. One woman explained that people need to have Disability Living Allowance for three years to qualify for a Motability car. She suggested that people should get help when filling in the forms for benefits. One woman said the limited mileage allowed per year in this scheme was a disadvantage because she needed to use her car a lot and so exceeded the limit and had to pay extra.
More advice and information
People had mixed experiences but many felt that health professionals did not give them enough information on financial benefits. People may be unaware that they can claim benefits. One woman said that she only learnt from other patients in hospital that she was eligible for Disability Living Allowance. Another said that it took years to sort out her benefits and that she only heard about them from other people with arthritis. (For more help see our 'Resources' sections. The DSS Benefit Enquiry Line is 0800 88 2200, Directgov and Citizen's Advice Bureau).
Last reviewed August 2010.
Last updated September 2010.
