Living with Dying

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 (now replaced by Personal Independence Payment -PIP) said that no one had asked her or her husband if they were managing financially. (For more help see 'Practical Matters - Benefits and money ' listed in the 'Resources' section, GOV.UK the DSS Benefit Enquiry Line Tel: 0800 88 2200 and Citizen's Advice Bureau.)

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).  Employment and Support Allowance is usually paid after Statutory Sick pay has stopped.

For a person to qualify for Employment and Support Allowance a Work Capability Assessment needs to be carried out. GOV.UK 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 our practical matters resources.

Personal Independence Payment (PIP) is a benefit for people of working age (16-65) with disabilities (or those that are terminally ill) who need help with daily living activities or help getting around, or both. It has replaced Disability Living Allowance (DLA) for anyone making a new claim. PIP isn't based on National Insurance contributions and isn't means-tested. You can claim it whether you're working or not.

Attendance Allowance is a tax free and isn’t means tested. It is paid to people over 65, to help with the cost of their care or supervision needs, which should have existed for six months before claiming unless you are terminally ill and then you can apply straight away (under DS 1500 special rules). Any level of Attendance Allowance can increase your entitlement to Pension Credit, Housing and Council Tax Benefits, and health benefits, etc. You can get the benefit even if you live alone with no help. As long as any help or supervision is reasonably required you could still qualify for Attendance Allowance.

Disability Living Allowance (DLA) for children is tax free and isn’t means tested. It is for people looking after children under 16 to help with the extra costs of looking after a child who needs supervision or help with their daily or nightly care needs or has mobility problems. They must have had these difficulties for at least 3 months unless they are terminally ill and then you can apply straight away.

For more information on benefits and how to apply see GOV.UK’s website.

People need to know about Personal Independence Payment 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.

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 Personal Independence Payment (PIP) immediately, instead of having to wait a number of months. For Personal Independence Payment (PIP) the patient (or a relative or representative) must telephone the PIP new claims line  (0800 917 2222) where you will be asked questions about basic eligibility for PIP and extra questions about how your condition affects your ability to get around. GOV.UK have a guidance factsheet about ‘Special rules for terminal illness’ on their website. If the claimant has not proved that they are terminally ill as part of an Employment and Support Allowance (ESA) form they will need to get a medical report from their doctor, specialist or consultant on form DS1500, which should be sent to the Department of Work and Pensions. Attendance Allowance is paid to people age 65 or over who have difficulty looking after themselves. If a person is terminally ill, they can apply for Attendance Allowance under the ‘special rules’. Under these rules they don’t need to meet the six-month qualifying conditions. Their claim will be dealt with quickly and they will receive the benefit at the highest rate. For more information about Attendance Allowance or for an application form, call the DWP's Disability Benefits Helpline on 0845 712 3456. You can also apply online at GOV.UK.

Some people did not know that they might be eligible for benefits. 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.

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.

Many people were grateful that their Macmillan nurses or social workers had helped them to fill in the benefit 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 wheelchair. Some hospitals and some GPs have a Benefits Adviser or Care Advisor.

People under 65 who have difficulty walking can claim the Personal Independence Payment (Mobility Component). Motability is a voluntary organisation which helps people gain access to a car, they have more information about the new arrangements as part of the Personal Independence Payment on their website. These people can also apply for a Disabled Badge for parking (Blue Badge Scheme). (For more help see 'Practical Matters - Mobility' section listed in the 'Resources and Information'.

Some people are entitled to Industrial Injuries Disablement Benefit (see GOV UK for more details). 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 Macmillan Cancer Support).

Last reviewed August 2014.

Last updated August 2014.

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