Fatal delay

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

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,


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,

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

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