What can a third sector organisation provide for people with breast cancer that public health services cannot? Developing support services in response to service evaluation

Introduction Breast Cancer Haven (BCH) is a national UK breast cancer charity supporting people through the physical and emotional experience of breast cancer. This service evaluation aimed to identify what people expected/ hoped for from BCH, and to evaluate how well those expectations were met. Methods A link to an on-line SurveyMonkey survey was emailed out during November 2014–January 2015 to 4804 people with breast cancer who had attended BCH centres in London, Yorkshire or Hereford since 2000. Frequency analyses of pooled responses to multiple choice questions were downloaded from the SurveyMonkey website. Individual free text responses were analysed by coding into common themes, clustered into categories. Results A total of 980 BCH users (98.0% female, peak age 50–54 years) completed the survey; 20.4% of those invited. Most attended a BCH centre during 2012–14, nearly half travelled 30–60 min, most visited 6–10 times. Emotional (77.6%) and physical (67.2%) were the most frequent concerns. Breast cancer information, nutritional therapy and the Welcome Day were considered the most helpful therapies. Main categories of expected/hoped for factors were information and advice, emotional support, a therapeutic space and therapeutic relationships. 84.0% participants got what they expected or much more than they expected. Conclusions The findings suggest that a third sector organisation like BCH provides a support service that meets the expectations of the majority of those attending. Regular service evaluations are needed to ensure that people with breast cancer receive those aspects of care that are often lacking in the NHS setting.