A delay they can ill afford: delays in obtaining Attendance Allowance for older, terminally ill cancer patients, and the role of health and social care professionals in reducing them

Abstract

Despite a growing interest in holistic care for the terminally ill, financial needs are often not addressed. This is reflected in the fact that some people with a terminal illness are not accessing disability benefits, despite eligibility. The present paper is based on a study investigating delays experienced by cancer patients in obtaining Attendance Allowance (AA) by special rules, and missed opportunities for professionals to assist with claims. The study took place in a hospice where patients were referred to social work professionals for assistance in claiming AA. In each case, the patient had been eligible for some time before the referral. Over a 5-month period, all 22 patients who were referred completed a questionnaire. Data were collected to show their personal characteristics, how they came to be referred for assistance and their level of knowledge of AA. The length of time that people had already been eligible and the time taken to claim were recorded to show the amount of lost benefit. The health and social care professionals whom these patients had seen since becoming eligible were also recorded. A wide range of people experienced delays in accessing AA. Their total lost income ranged from pound 110.60 to pound 1106.00. The median was pound 387.10 and four people died before being awarded AA. Only four patients were fully aware of their eligibility. Every person had seen between one and four professionals since becoming eligible for the benefit, without the meeting resulting in a claim. Increased income aids the management of illness, and information and assistance to claim disability benefits need to be made available in a consistent manner at the earliest opportunity. Health and social care professionals are in a position to provide this. However, changes to the claims process, proposed by the present author, could ensure that AA is received automatically, without delay and without extensive paperwork.

Living with economic hardship at the end of life

“…Research by the UK-based MacMillan Cancer Support organisation found that terminally ill patients with cancer of working age were repeatedly required to undergo work capacity assessments and work-focused interviews to gain access to income support payments and that the assessment processes were not sensitive to the problems faced by people with cancer 13. Policies such as these result in unnecessary delays for patients and carers seeking support and also lead to underutilisation of programmes that are designed to buffer the economic impact of illness 5. A streamlined process for assessment for government-funded support would improve access to and the use of these programmes; and minimise the burden faced by patients and carers.…”

“…While out-of-pocket costs account for only a small proportion of the total cost of care provided to patients receiving end-of-life care, their impact on the household can be severe as costs can escalate rapidly, often depleting a household's economic and social resources at a time when they are already burdened by a loss of income and assets. Furthermore, rapidly changing needs of terminally ill patients and their family carers are not accommodated well in the assessment and eligibility processes of social welfare programmes5 and other support services such as respite care.…”

“…This burden can have a lasting effect by significantly reducing the future economic stability of the household. Studies have found illness-induced poverty was not merely a stress for couples at the end of life, but that out-of-pocket costs from that period continued to keep surviving spouses poor 5. Spouses carry most of the responsibility for providing the support and care required for their family members to remain at home.…”

"Done more for me in a fortnight than anybody done in all me life." How welfare rights advice can help people with cancer

“…Relating the findings to the limited available literature backs up existing research that individuals in the UK struggle with the benefits system when left to deal with it alone [40]. Furthermore, people affected by cancer in the UK miss out on benefits to which they are entitled in the absence of specialist services [3,4] and that there are considerable additional costs associated with cancer treatment [22]. Uniquely, this study has a longitudinal element, and follow-up interviews are currently underway which will enable a more in-depth examination of the impact of the cancer trajectory on finances.…”

“…This may result in difficulties affording the additional resources required to cope with illness [2], as well as adding further strain to the process of dealing with cancer. However, such financial pressures are not often discussed with health professionals [3,4]. Evidence shows that cancer is likely to affect patients' incomes although there appear to be differential effects depending on the type of cancer [5] and whether those affected are still in employment or retired [6].…”