Lung cancer patients' perceptions of access to financial benefits: a qualitative study.
Chapple A., Ziebland S., McPherson A., Summerton N.
BACKGROUND: Financial worries may add to the stress experienced by patients and their families, but they are often not discussed with health professionals. People with lung cancer usually have to give up work, and many are terminally ill. AIM: To explore the financial concerns, perceptions and experiences of claiming benefits of people with lung cancer. DESIGN OF STUDY: Qualitative study using narrative interviews. SETTING: United Kingdom. METHOD: Interviews with a maximum variation sample of 45 people with lung cancer, recruited through general practitioners, consultants, nurses and support groups. RESULTS: Some people did not know that they could claim financial benefits, others found claim forms complicated, or were unaware that they had no legal right for important allowances to be backdated. Some people had to 'struggle' to obtain much needed benefits to which they were entitled. Patients below retirement age said that they would prefer to be working, and many were shocked by how hard it was to obtain the information needed to make claims. There was some evidence that even those who are seriously ill, and life-time tax payers, feel stigma in claiming financial help. Nurses, doctors and other patients sometimes offered valuable guidance, but many patients did not receive timely advice. The special social security rules (and DS1500 report form), which might have allowed them to claim benefits more rapidly than usual and at a higher rate, were not always understood. CONCLUSION: Many reasons were found as to why people with lung cancer have difficulty getting the benefits that they are entitled to. Hospital and primary care staff who handle the issue sensitively and help set claims in motion provide a valuable service that should be replicated throughout the National Health Service.