Patients with a terminal illness, identified by palliative care teams working in Manchester, and patients attending a heart failure clinic, were asked to participate in a prospective survey to determine their main concerns. Data were collected from 213 palliative care (PC) patients (mostly with cancer) and 66 patients with heart failure (HF). The median ages of the two patient groups were similar, but the HF patients were more likely to be male and living with a partner; 13% of PC and 7% of HF patients reported that they had no carer. The PC patients had more district nurse, hospice, social work and physiotherapy input. The most frequently reported troublesome problems for PC patients were pain (49%), loss of independence (30%) and difficulty walking (27%). HF patients reported dyspnoea (55%), angina (32%) and tiredness (27%) as the most troublesome problems. From a checklist of symptoms, the frequency of tiredness (PC = 77%, HF = 82%) and difficulty getting about (PC = 71%, HF = 65%) were high in each group. Psychological problems were reported by 61% of PC and 41% of HF patients. Cardiac patients reported more breathlessness and cough than PC patients (83% vs 49% and 44% vs 26%, respectively). Reduced libido was more common in cardiac patients (42% vs 21%). Patient disclosure of troublesome problems to professional carers was high (>87% in both PC and HF patients). Documented action was greater for physical than social or psychological problems. For PC patients, documented action was recorded for 83% physical, 43% social/functional and 52% psychological problems. For HF patients documented action was recorded for 74% cardiac, 60% physical - non-cardiac, 30% social/functional and 28% psychological problems. Clearly many patients' troublesome problems were not being addressed. As a result of this study, specific action by health care professionals was taken in 50% of PC patients and 71% of HF patients. We plan to target specific educational events on the treatment of physical problems, psychological assessment and social service provision.

Much within existing services works well for people with chronic obstructive pulmonary disease, but opportunities to enhance palliative care for this underserved group remain. Future research might focus on prospectively evaluating the impact of key components of palliative care on core patient-centred outcomes. Additionally, work must be done to raise awareness of the benefits of specialist palliative care for non-cancer patients, as negative associations can form a barrier to access.

The majority of SPC services accept ESRD patients, but limited numbers are referred. Respondents indicated that this barrier could be addressed by closer collaboration and better communication and education between renal and SPC services. Other initiatives to enable delivery of SPC to increased numbers of ESRD patients include the use of specific referral and clinical care guidelines and expansion of joint MDT meetings and out-patient clinics.

Background Patients with end-stage chronic obstructive pulmonary disease (COPD) experience health-related quality of life comparable to, or worse than that of people with advanced non-small cell lung cancer. Access to specialist palliative care is poor for those with COPD, and comparisons with lung cancer patients demonstrate inequalities. National COPD guidelines state that patients ‘should have access to the full range of services offered by multidisciplinary palliative care teams’. Services are being developed to address this inequality, but it is not known whether current models of specialist palliative care are appropriate to the needs of COPD patients. Aim To understand the experience of patients with COPD who access specialist palliative care. Methods Eight patients accessing any service for one month (outpatient) or one week (inpatient) undertook semistructured interviews (mean duration 34 min). Recordings were transcribed verbatim and analysed using hermeneutic phenomenology. Results Perceived benefits of specialist palliative care included reduced frequency of hospital admission, improved physical symptoms, reduced social isolation and a broadened physical environment in which participants could function. Improvements in psychological wellbeing (including improved mood, confidence and self-worth) were also described. Patients were aware of their poor prognosis, but some were initially distressed at the prospect of palliative care referral, mainly due to prior associations between palliative care and death. Perceptions changed following engagement with services, with fear of discharge becoming problematic. Conclusions There is much within existing services that works well for people with COPD, but some features of care could be modified, such as patterns of service provision and discharge policy. In contrast with previous literature, participants were aware of their poor prognosis. However, work is needed to dispel negative perceptions of specialist palliative care among COPD patients, as they may form a barrier to access.