Introduction Patients with chronic heart failure (CHF) have a prognosis worse than many cancers. Despite national policy, those receiving specialist palliative care (SPC) remain low. This study provides an updated overview of CHF symptom burden as well as carer experience.

Aim(s) and method(s) 33 out-patients with NYHA class III/IV CHF were randomly selected from routine cardiology follow-up and completed the Minnesota Living with Heart Failure Questionnaire (MLHFQ) and the Hospital Anxiety and Depression Scale (HADS). Additional questions regarding advance care planning (ACP), community support and integration of SPC were asked. 16 informal carers completed a Modified Carer Strain Index (CSI).

Results MLHFQ revealed high physical symptom burden, particularly: difficulty with hobbies (82%), dyspnoea (82%), needing rest (81%), restricted walking (79%), fatigue (79%), worry (73%) and difficulty sleeping (67%), with nearly half rating dyspnoea and fatigue as severe. 39% had anxiety and 24% depression as measured by the HADS. Evidence of ACP was poor (13%). 52% were in receipt of professional social support, 82% informal support and none received community SPC. Mean CSI score was 7 (of possible 26) with 63% having disturbed sleep, 63% finding the changes in the patient upsetting, and 56% feeling overwhelmed. All participants were supportive of an integrated SPC and CHF out- patient service.

Conclusion(s) This study confirms that despite best practice recommendations, there remains unmet SPC need for patients/carers with CHF. Improved integration of services is needed to address both symptom burden and quality of life as well as ACP uptake; ultimately enhancing end of life care.