People with cardiomyopathy need information and support at many key times

27th April 2017

Cardiomyopathy patients need information and support at key times on their journey from diagnosis to learning to live with the condition, new patient-led research has shown.

As well as at diagnosis, patients particularly need information and support on discharge from hospital, when issues around family screening for cardiomyopathy arise, when their condition (such as symptoms) change in any way and when having a heart device, such as a pacemaker or internal defibrillator (ICD), fitted, said the small study carried out with support of Cardiomyopathy UK’s North East England Cardiomyopathy Support Group.

Last year cardiac genetics nurse Julie Goodfellow, from the Freeman Hospital, Newcastle carried out the study with support group organiser Cathy Stark, Ian Mackersie and Vera Mackersie.

They interviewed 21 people (16 people with cardiomyopathy and 5 carers) about their experiences of the healthcare system and cardiac care services in north England. Through in-depth interviews, they also looked at the impact of the condition on the physical and emotional health of those with the condition, as well as their families.

Many respondents experienced a paucity of information and support at the critical times.
They said there was a need for specialist cardiomyopathy nurses to answer their questions and help guide them “through the maze.”

Respondents’ experiences of medical care were mixed across all of the health care system, including consultant cardiologists, GPs and specialist nurses. Confidence in specialist hospitals and specialist nurses was evident but psychological support was often lacking at diagnosis and as people continued to live with cardiomyopathy. Emotional issues that required support included fear for the future and the impact of the condition on family members.

Patients and carers also had concerns around practical issues such as exercise, work and social activities.

Overall, the respondents were deeply affected by a diagnosis of cardiomyopathy, and had both positive and negative experiences in the health care system. They felt it did not fully understand cardiomyopathy or the impact it has on the lives of patients and carers.

The findings have been published in a report called Cardiomyopathy Patients’ Experiences of Cardiac Care Services. For the full report, see here.