Lymphoedema secondary to cancer is a relatively neglected and under-researched condition. Few studies report people's experiences of care and treatment provision when living with the condition. Current practice focuses on the physical treatment yet psychosocial needs often remain unmet. A previous study examining the patient perspective identified the theme of being ‘abandoned by medicine’. Perceived lack of support may result in a delayed adaptation and acceptance of this long-term condition and can significantly impact on psychological well-being. We explore this emerging theme alongside others in order to provide a guide to action for improvements for patient benefit.

The central aim was to explore women's views of their care and treatment following a diagnosis with lymphoedema secondary to cancer. This forms part of a larger study aimed at assessing appropriate screening tools to measure psychosocial distress.

A mixed-methods approach was used for the main study. Here we report the qualitative component, derived from in-depth semi-structured interviews conducted in the homes of the participants (n = 14) and focus group discussions (n = 15). In addition, qualitative comments from questionnaire data from a large-scale postal survey are included (n = 104).

Participants identified considerable deficiencies in health care workers’ knowledge and awareness of lymphoedema, which subsequently impacted on the patients’ needs for information, support and understanding. Access to appropriate treatment was patchy and problems were identified with the process of obtaining compression garments, massage and other sources of help. Although lymphoedema is a long-term disfiguring condition, and much is known about how this impacts on patients’ emotional well-being, little attention was paid by health professionals to potential psychosocial consequences. In essence women had to become experts of their own condition and cope as best as they could. We provide recommendations to improve service delivery and address these unmet needs.