Financial help 

People with a terminal illness may experience financial hardship, and most are entitled to one or more government benefits. But people don't always know how to claim these benefits, or whether they would be likely to qualify for them. A woman who recalled being shown how to apply for a Disability Living Allowance said that no one had asked her or her husband if they were managing financially.

(For more help see our Information and Resources sections. The DSS Benefit Enquiry Line is 0800 88 2200) 

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 the Citizen's Advice Bureau web site www.nacab.org.uk). Incapacity Benefit is usually paid after Statutory Sick pay has stopped.

For a person to qualify for Incapacity Benefit a doctor may have to examine the person to see whether or not s/he can perform certain tasks. People with a terminal illness are exempt from the examination under social security Special Rules, but the doctor must complete a DS1500 Report form. Under the Special Rules Incapacity benefit can be obtained at the highest rate after only 28 weeks of sickness.

People under the age of 65 who need care and attention may be able to claim Disability Living Allowance (Care Component). Those over the age of 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. These benefits are not means-tested.

People need to know about Disability Living Allowance and Attendance Allowance and to claim as soon as a diagnosis of serious illness is made, because there is no legal right for these benefits to be backdated. They can be backdated only at the discretion of the Benefits Office.

One elderly man who we talked to was pleasantly surprised to find that he could obtain Attendance Allowance even though he lived alone. He was also glad to find it wasn't taxed.

He was pleasantly surprised to find that he was eligible for Attendance Allowance, even though he lived alone.

One woman said that the Disability Living Allowance had made a huge difference to her and her husband, and another said that her Disability Living Allowance enabled her to pay for someone to do her cleaning.

If a person is terminally ill and not expected to live longer than six months, under Social Security Special Rules he or she can obtain Attendance Allowance or Disability Living Allowance immediately, instead of having to wait a number of months. The patient (or a relative or representative) must fill in the relevant form and must also ask the doctor to complete a DS1500 report form. Both forms have to be sent to the Department of Work and Pensions.

The nurse helped him apply for Attendance Allowance under Special Rules because he was not expected to live more than six months.

Some people did not know that they might be eligible for Disability Living Allowance. Others didn't want to apply for benefits. One man didn't think he would qualify for benefits and said that he hated bureaucracy. A woman who had cancer of the kidney said that she hadn't applied for benefits or chosen to see a palliative care nurse because at the moment she was managing and she didn't want to think of herself as disabled.

Explains that he would not like to ask the State for anything and that he loathes bureaucracy.

Some people had struggled to get their benefits and delays had occurred. One woman explained that if a person is expected to live for more than 6 months, to get Disability Living Allowance that person has to fill in a long form to demonstrate that benefits are really needed. She suggested that when filling in the form people should think about the help they need on their bad days rather than the help they need on their good days.

He waited many weeks to get financial benefits and found the process very unsympathetic.

Suggests that when applying for Disability Living Allowance people should indicate what they can do on 'bad' days, not 'good' days.

Many people were grateful that their Macmillan nurses or social workers had helped them to fill in the Social Security forms. One woman said that her Macmillan nurse 'miraculously' produced the relevant form and helped to complete it. Nurses also helped a woman with myeloma to obtain benefits while she was in hospital. The money she received from her Disability Living Allowance helped her to buy a wheel chair. Some hospitals and some Primary Care Trusts have a Benefits Adviser.

Her social worker helped her to fill in the forms to obtain Disability Living Allowance.

The nurses at the hospital gave her advice about Disability Living Allowance, which she found an enormous help.

People under 65 who have difficulty walking can also claim Disability Living Allowance (Mobility Component). These people can also apply for a Disabled Badge for parking (Blue Badge Scheme). Motability is a voluntary organisation which helps people gain access to a car.

Says that state benefits are generous and have enabled him to buy a new car.

Explains that the charity Motability has helped a lot and has helped him get a car.

Some people are entitled to Industrial Benefit. It will be paid, for example, if a person can demonstrate he was in contact with asbestos during the course of paid employment after July 1948, or during military service. It may also be possible to claim a Lump Sum payment from the government or personal injury compensation from an employer. (For advice about mesothelioma, see a booklet called Information for people with Mesothelioma and their carers, compiled by M. Robinson, 2003 edition. Tel: 0114 274 4420).

His employers have accepted liability for his exposure to asbestos and he has obtained compensation.