Work or welfare after cancer? Explorations of identity and stigma.

With increasing numbers of people living with cancer, a greater focus is required on the social consequences of the disease. This article explores the connections between cancer and employment and the constraints imposed by ill health and wider structural conditions. Narrative data from 23 people of working age with cancer in north-east England collected longitudinally over 16 months highlight the impact of financial strain caused by temporary or permanent interruption to employment, and the positive benefits of an upstream welfare rights intervention in enabling participants to claim benefit entitlements and boost incomes. Returning to work, for those who were able, helped repair the disruption caused by the illness. For those unable to work, reliance on welfare benefits, while necessary, conferred a stigmatised identity that compounded the disruption wrought by cancer. While stigma occurs at the individual level, the structural dimensions of stigma need to be acknowledged in order to analyse the forces that cause, maintain and perpetuate the stigma associated with claiming welfare while ill. We conclude that current UK policies and welfare reforms to reduce sickness-related welfare claims will lead to greater hardship during periods of ill health and increase inequalities.

Addressing the financial consequences of cancer: qualitative evaluation of a welfare rights advice service.

BACKGROUND: The onset, treatment and trajectory of cancer is associated with financial stress among patients across a range of health and welfare systems and has been identified as a significant unmet need. Welfare rights advice can be delivered effectively in healthcare settings, has the potential to alleviate financial stress, but has not yet been evaluated. We present an evaluation of a welfare rights advice intervention designed to address the financial consequences of cancer. METHODS: Descriptive study of welfare outcomes among 533 male and 641 female cancer patients and carers aged 4-95 (mean 62) years, who accessed the welfare rights advice service in North East England between April 2009 and March 2010; and qualitative interview study of a maximum variation sample of 35 patients and 9 carers. RESULTS: Over two thirds of cancer patients and carers came from areas of high socio-economic deprivation. Welfare benefit claims were successful for 96% of claims made and resulted in a median increase in weekly income of £70.30 ($109.74, €84.44). Thirty-four different types of benefits or grants were awarded. Additional resources were perceived to lessen the impact of lost earnings, help offset costs associated with cancer, reduce stress and anxiety and increase ability to maintain independence and capacity to engage in daily activities, all of which were perceived to impact positively on well-being and quality of life. Key barriers to accessing benefit entitlements were knowledge, system complexity, eligibility concerns and assumptions that health professionals would alert patients to entitlements. CONCLUSIONS: The intervention proved feasible, effectively increased income for cancer patients and was highly valued. Addressing the financial sequelae of cancer can have positive social and psychological consequences that could significantly enhance effective clinical management and suitable services should be routinely available. Further research is needed to evaluate health outcomes definitely and assess cost-effectiveness.

Survey of speech and language therapy provision for people with Parkinson's disease in the United Kingdom: patients' and carers' perspectives.

BACKGROUND: Communication and swallowing changes are prominent in Parkinson's disease, but there remains a lack of information regarding the experiences and expectations of people with Parkinson's disease in respect of speech-language therapy (SLT) services. AIMS: To conduct a survey of people with Parkinson's disease and their carers in the United Kingdom to elicit their views concerning communication and swallowing changes in Parkinson's disease and the support they envisage in helping with these changes. METHODS & PROCEDURES: A national survey utilizing a questionnaire developed for the project, accessible by people with Parkinson's disease in web-based, e-mail or paper forms. OUTCOMES & RESULTS: A total of 168 people with Parkinson's disease (median = 7 years since diagnosis, range = 0.5-30) and 47 carers who provided their impression of the experience of the PwPD responded. Of these 215, 92 (43%) had no contact with SLT services. In general those who had seen an SLT found it a positive experience. Pointers for improvement centred around timing, intensity, duration and access to SLT as well as issues around transfer and maintenance of gains outside of clinic and (lack of) attention to psychosocial dimensions. Availability of ongoing support as the situation evolved and access to SLT when it was needed were two prominent features desired of a responsive service. CONCLUSIONS & IMPLICATIONS: Responses suggest that when SLT is available it offers positive support, but respondents felt (re)access when and where SLT is needed could improve, as well as what aspects of swallowing and communication were addressed in assessment and therapy. We reflect on possible recommendations to address the challenges for SLT services in considering organization and content of provision.

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

BACKGROUND: In the UK many people with cancer and their carers do not have easy access to the welfare benefits to which they are entitled adding further strain to the process of dealing with cancer. It is estimated that nine out of ten cancer patients' households experience loss of income as a direct result of cancer, which, due to its socio-economic patterning disproportionately affects those most likely to be financially disadvantaged. In the UK proactive welfare rights advice services accessed via health care settings significantly increase benefit entitlement among people with health problems and this paper reports on a qualitative study examining the impact of a welfare rights advice service specifically designed for people affected by cancer and their carers in County Durham, North East England (UK). METHODS: Twenty two men and women with cancer or caring for someone with cancer who were recipients of welfare rights advice aged between 35 and 83 were recruited from a variety of health care and community settings. Semi-structured interviews were undertaken and analysed using the Framework method. RESULTS: Most of the participants experienced financial strain following their cancer diagnosis. Participants accessed the welfare rights service in a variety of ways, but mainly through referral by other professionals. The additional income generated by successful benefit claims was used in a number of ways and included offsetting additional costs associated with cancer and lessening the impact of loss of earnings. Overall, receiving welfare rights advice eased feelings of stress over financial issues at a time when participants were concerned about dealing with the impact of cancer. Lack of knowledge about benefit entitlements was the main barrier to accessing benefits, and this outweighed attitudinal factors such as stigma and concerns about benefit fraud. CONCLUSIONS: Financial strain resulting from a cancer diagnosis is compounded in the UK by lack of easy access to information about benefit entitlements and assistance to claim. Proactive welfare rights advice services, working closely with health and social care professionals can assist with the practical demands that arise from dealing with the illness and should be considered an important part of a holistic approach to cancer treatment.