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).
Describes many things that cost more because she has arthritis.
Sandra says that she has had lots of extra expenses following her diagnosis of RA.
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 persons 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.
Explains how the social services Direct Payments scheme works, which gives people control over…
Social services paid for a chair to lower her into the bath but wouldn’t pay for other items.
The council paid most of the cost of adapting his house.
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 – for current rates see GOV UK. Other benefits can be paid after Statuary Sick pay has stopped. A woman we interviewed found one such benefit invaluable and wished she had known about it sooner.
She finds Incapacity Benefit invaluable and wishes she had known about it earlier.
In order for a person to qualify for certain government benefits a Work Capability Assessment and questionnaire may need to be carried out. For more information on government benefits see GOV.UK website.
We talked to people who had claimed a number of different government benefits and some of the names and types of benefits available have changed since these interviews. Several people objected to certain aspects of this process. One young woman found doctors examinations most dehumanising while another thought that the qualifying process was fair and that the assessment ensures that everyone gets what they are entitled to.
To obtain benefits she needed a doctor’s examination but found it ‘dehumanising.
Melissa talks about the application and assessment process for Incapacity Benefit and thinks that…
Pat is receiving Incapacity Benefit and expects to be assessed again soon. She has been assessed…
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.
She does not receive benefits because she was assessed by a doctor on one of her better days.
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 benefits.
People who have difficulty walking can apply for a disabled badge for parking (Blue Badge Scheme) which is not means-tested ie. does not depend on existing income.
An independent organisation, Motability helps people gain access to a car or scooter. For details about eligibility please see their website. 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.
Explains why she decided to get a car through the charity Motability.
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 certain benefits. 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 section, GOV UK and Citizens Advice Bureau).