News

Since 1993, people with a terminal prognosis have been entitled automatically to the higher rate of attendance allowance or disability living allowance care component, and to have these claims fast-tracked.

Special rules exist so terminally ill people can bypass the bureaucracy around claiming disability benefits. But the efficacy of these "special rules" has never been measured; however, research into take-up shows that many people either don't claim, or have great difficulty doing so, due to lack of information and the system's complexity.


Difficulties are disproportionately experienced by people who are ill or disabled, older people (particularly women) and people from ethnic minorities.¹ Assistance with claiming can drastically reduce the income lost, but health and social care professionals often do not see this as their job.²

In recent research, I found that a significant number of older, terminally ill people were not aware of eligibility for attendance allowance. Of 22 referred for benefits advice over five months, only one was proactive in seeking that help. Even when referred, only four knew of attendance allowance special rules; and four people had no idea of their prognosis. Lack of information was particularly evident among people living alone.

On average, more than five weeks' benefit was lost before people were referred for help to claim - one had been eligible for 129 days. The mean loss of income before claiming was almost £300 and four people died before the benefit was awarded.

Delays in processing applications resulted, on average, in a further loss of more than £100. This was due to waiting for doctors to complete DS1500 forms and to time taken by the Benefits Agency to acknowledge receipt of applications. The agency's target of 10 days to process applications was not met in a quarter of cases. From becoming eligible to the award being made, the mean loss of income was £387.10.

During the time that they had been missing out on attendance allowance, the 22 patients saw more than 50 health or social care professionals (including 21 consultants, 12 GPs, nine district nurses, five specialist hospital nurses and one hospital social worker) without receiving information or help to claim. In every case, it was left to hospice workers to refer patients for help. This resulted in massive variations in delays (from five to 129 days) as patients received hospice services according to need rather than at a fixed point in their illness.


These findings reflect the debate as to whether welfare rights are part of health and social care professionals' jobs. Extra income helps to preserve and promote well-being.³ This, in turn, makes professionals' jobs easier. Patients can, for example, afford to keep warm, obtain better food and employ private cleaners. Increased income also reduces knock-on effects on family members.⁴

Take-up of attendance allowance by special rules can and should be increased. Loss of income while waiting for a DS1500 or for a claim to be processed is prevented if claim forms are requested from the Benefits Agency with start dates already on. To minimise delays before claiming, information and help are needed as soon as a terminal prognosis is made. Consultants are the first people able to provide this and they could at least refer patients. All professionals involved with terminally ill patients should be aware of attendance allowance special rules and how to access information and help to claim. Checking receipt of benefits should be part of any assessment.

However, the need to claim could be eliminated. Everyone over 65 is already known to the Department for Work and Pensions as a pensioner. As attendance allowance is not means-tested, the only extra information needed is notification of a terminal prognosis.

Geraldine Nosowska is a social worker at St Cross Hospital, Rugby

References:

¹ A Corden, Changing Perspectives on Benefit Take-up, Social Policy Research Unit, University of York, 1995

² R Sainsbury et al, Evaluation of Disability Living Allowance and Attendance Allowance, Department of Social Security, 1995

3 L Hobby and S Abbott, More Lolly, More Jolly. Health Service Journal, 9,9,99, 26, 1999

⁴ Department of Health, Caring about Carers; A National Strategy for Carers, Stationery Office, 2000