Introduction and aims Heart failure (HF) is as ‘malignant’ as many common cancers. It is known that end stage heart failure (ESHF) symptoms have a negative impact on the daily lives of patients who also feel unsupported. The aim of this study is to examine patient experiences of managing their condition, with a particular focus on their ‘treatment burden’, defined as the ‘work’ they do to manage their condition, including reference to the services they use and how they negotiate and mobilize these. It is essential to understand these issues if we are to be able to design more patient centred services.

Methods This study involves semi-structured interviews with ESHF patients focusing on the work they do to manage and ‘live’ with their condition. Qualitative data analysed using framework methods informed by Normalization Process Theory. Inclusion criteria: at least Grade 3 or 4 NYHA classification HF; who have ongoing symptoms despite optimal therapy; and have a history of admissions for this condition.

Results 33 patients identified, 21 consenting to participation. 16 male; 5 female. Patients described a vast range of treatment burdens many which were secondary to the health care systems and the lack of a patient centred approach. Issues raised included: the work imposed by disorganised systems of care necessitating multiple attendances for check-ups and investigations; lack of continuity; inadequate communication between health professionals; polypharmacy; and difficulties accessing services.

Conclusions This study has highlighted a range of challenges for patients posed by current health care systems, highlighting clear points for intervention.