‘Sometimes you just need someone to guide you through the maze’ – Improving cardiac care services in the North of England: suggestions from a patient-led project

Cardiomyopathy is a disease of the heart muscle, thought to affect around 160 000 people in the UK. It is often inherited and can be life-changing, with symptoms including tiredness, breathlessness and palpitations. The role of the patient in NHS care is no longer that of a passive recipient of care. There is an expectation that patients will be engaged in their own health, care and treatment. Initiatives exist where patients are encouraged to become involved in the design, planning and delivery of services. A patient-led service improvement project was designed and carried out by members of a local Cardiomyopathy UK support group, in order to capture the experiences of people affected by cardiomyopathy as they journeyed through the healthcare system in the North of England. This has enabled an evaluation of service provision, highlighting examples of good practice and areas for improvement. A total of 21 people, both patients and family members, shared their story through in-depth interviews. The overall picture that emerged was of a group of people deeply affected by a diagnosis of cardiomyopathy, who had experienced both positive and negative aspects of a healthcare system that does not appear to fully understand cardiomyopathy or the impact the condition has on the lives of patients and carers. The project highlighted a need for information and support at key times on a patient's journey through cardiomyopathy—at diagnosis, on discharge from hospital, when dealing with a device, when issues around family screening arise, or when the condition changes in some way. Many respondents had experienced a lack of information and support at these key times and communication between patients and health professionals was sometimes inadequate.