The unclaimed millions: DLA and cancer patients
Sally Lee, Campaigns Manager and Duleep Allirajah, Senior Policy Analyst at Macmillan Cancer Relief describe the charity's recent research project.

Background
The research
The figures
Barriers to access
Next steps

Background
Macmillan commissioned this research because, although there was a great deal of anecdotal evidence provided by patients and health and social care professionals, there was no robust evidence about disability living allowance (DLA) and attendance allowance (AA) take-up amongst cancer patients. Historically, Macmillan has supported people financially through its patients grant scheme and more recently has set up welfare rights projects in a number of regions and a national benefits helpline. Evidence from Macmillan's benefits advice projects indicated that, while people undergoing treatment for cancer incurred substantial extra costs (eg, hospital travel, extra heating, prescription charges, higher phone bills, replacement clothing due to weight loss/gain), they were encountering significant problems obtaining DLA and AA. A small qualitative study conducted in June 2002 suggested that financial concerns are frequently second only to physical pain as a cause of stress for people affected by cancer. [Footnote 1] Furthermore, a recent analysis of grant applications to Macmillan showed that as many as 25 per cent of the applicants might be eligible for social security benefits.

The research
Macmillan's report The unclaimed millions is based on two pieces of research. Macmillan commissioned the Centre for the Economics of Health at Bangor University to quantify the extent of DLA and AA take-up amongst cancer patients in the UK and to explore the factors that affect take-up up. [Footnote 2] Estimating DLA take-up is notoriously problematic and there are no reliable estimates of the level of take-up in the general disabled population. In the Macmillan study the researchers were only able to estimate the DLA and take-up rates for terminally ill patients because there are no primary sources of data about the prevalence of care needs among cancer patients. Office for National Statistics figures for cancer deaths in 2001 were compared with cancer-related DLA and AA claims in the same year. It was felt that cancer-related deaths was a fairly reliable indicator of potential DLA/AA entitlement because it is reasonable to assume that these cancer patients would either qualify through the special rules or else have substantial care needs.

Macmillan also conducted a qualitative study, in conjunction with the Northern Ireland Social Security Agency, looking at the barriers to claiming benefits faced by cancer patients. [Footnote 3] The Northern Ireland research project utilised a variety of different methods including focus groups, questionnaires, and in-depth interviews with a range of health and social care professionals, Social Security Agency staff, voluntary sector advice services and people affected by cancer.

The figures
The results of the quantitative research showed that an estimated £126.5 million DLA and AA goes unclaimed in the UK. That is, 54 per cent of patients (almost 83,000 people) are dying as a result of cancer but not claiming DLA or AA. The £126.5 million figure was arrived at by calculating the amount of higher rate AA or higher rate DLA care component a person would have received over a six month period – ie, the notional length of time a terminally ill patient would be receiving DLA or AA under the special rules (using 2004/5 benefit rates).

Broken down by devolved country this means that:

• in England 55 per cent of people dying from cancer (69,000 patients) are not claiming DLA or AA – worth £106 million;
• in Scotland 64 per cent of people dying from cancer (almost 10,000 people) are not claiming DLA or AA – worth £15 million;
• in Wales 32 per cent of people dying from cancer (almost 3,000 people) are not claiming DLA or AA - worth £4 million;
• in Northern Ireland 23 per cent of people dying from cancer (nearly 900 people) are not claiming DLA or AA – worth £1.3 million.

There was also significant variations between the Government Office Regions in England. See table in the hard copy version of this article.

In order to explain the regional variations, the researchers at Bangor developed an economic model, based on Welsh data, to test which social or economic factors potentially affect DLA/AA take-up. The researchers concluded that three factors in particular affected the rate of take-up amongst cancer patients:

• death rate from cancer;
• the number of people claiming other benefits;
• population density.

Unsurprisingly DLA/AA take-up rates are highest in socio-economically deprived areas. One of the limitations of the research was that local health administration boundaries are not aligned with other government sectors, and this prevented the researchers from 'drilling down' deeper to explore variations in take-up at a local level. For example, while the take-up rate is lower in the more affluent South East there are bound to be pockets of economic deprivation and unmet need within that region. More research is needed to gain a more complete understanding of factors affecting take-up at a sub-regional level.

Barriers to access

"I found claiming benefits more stressful than having cancer itself" – Lyndsay from Luton

The qualitative evidence from the Northern Ireland research can help to explain why so many cancer patients are not claiming DLA or AA. Although the administrative arrangements for benefit delivery in Northern Ireland differ from the rest of the UK, the DLA and AA system is, to all intents and purposes, identical and the problems faced by claimants in Northern Ireland will be shared by those in Great Britain. The research identified a number of factors which serve as barriers to entitlement to DLA and AA for cancer patients:

• the difficulty determining eligibility for DLA and AA;
• the definition of 'terminal illness' – 74 per cent of nursing and social care professionals questioned the definition and said it was too restrictive;
• health professionals' reluctance to discuss prognosis – 35 per cent of GPs said they found it difficult;
• health professionals' lack of knowledge of the benefit system;
• patients' lack of awareness about benefits to which they may be entitled how to claim them;
• the complex claim forms; and
• social security staff's limited understanding about the impact of living with cancer.

Next steps
It is clear from Macmillan's research that the gateways to DLA and AA, and the terminal illness rules in particular, are failing large numbers of cancer patients. The fact that so many people are dying from cancer but not receiving DLA or AA suggests that the qualifying conditions are in need of urgent review. Now that the Government has officially abandoned the Activities for Managing Life assessment model that it had been piloting, it should be prepared to consider where changes are needed to the existing disability tests.

Macmillan's research also highlights the absence of collaborative working between the NHS and DWP. One of the major reasons that cancer patients are not receiving DLA and AA is the dearth of benefit advice services in health settings. Despite the rhetoric about joined-up government this is one area that remains distinctly disjointed.

To receive a copy of the report The unclaimed millions please email campaigns@macmillan.org.uk.

Footnotes
1. Quinn, A, Macmillan Cancer Relief Study into Benefits Advice for People with Cancer, University of Reading (2002) [back to text]
2. Tunnage, B, Tudor-Edwards, R, Linck, P, Estimation of the extent of Unclaimed Disability Living Allowance and Attendance Allowance for people with a terminal diagnosis of cancer, Centre for the Economics of Health, University of Wales, Bangor (2004) [back to text]
3. Martin S, Benefits Access for People Affected by Cancer in Northern Ireland, Macmillan Cancer Relief/Social Security Agency (NI) (2004) [back to text]

Welfare Rights Bulletin 181 August 2004