Programme objectives
The aim of the Caring Together programme was to develop pioneering models of palliative care for patients in the advanced stages of heart failure.
These models would:
- meet the needs of patients and carers
- complement the optimal management of heart failure (and other diagnosed long-term conditions)
- promote equity of access to palliative care for heart failure patients
- acknowledge the patient’s preferences in place of care, including home
- enable increased choice of place of care for patients
- improve co-ordination of care among stakeholders.
To inform the development of the models, the programme funded the University of Glasgow to undertake a detailed study examining perceptions of advanced heart failure from patients, carers and professionals, and barriers and facilitators to improving care in Greater Glasgow and Clyde.
Patient and carer perspectives
Patients raised how difficult it was to make sense of their illness and the processes of care. They seldom described themselves as having ‘heart failure’ and failed to recognise the deterioration of their condition. They frequently had a number of other long-term conditions, making it harder for them to understand their diagnoses and symptoms.
Patients disliked having to ask others to help with their care, and felt some people didn’t realise how unwell they were. They valued continuity in their care and found being admitted to hospital unpleasant, so were less likely to seek help for fear of this.
No, they don’t really tell you what the problem is, they just say your heart is bad and that’s it.
Health professional perspectives
Professionals felt that patients didn’t fully understand their condition or how serious it was. As such, they found it difficult to introduce the subject of palliative care.
They felt that healthcare systems, as currently configured, did not promote integrated care. A lack of clear pathways meant their patients had unscheduled admissions to hospital, often out of hours.
Some professionals, particularly GPs, district nurses and palliative care professionals, felt they lacked experience of advanced heart failure patients.
They will say ‘oh, at least I haven’t got cancer.’