Personal experiences of cardiomyopathy care

The experience of being diagnosed, and living, with cardiomyopathy can have a great impact on an individual's physical and emotional health and wellbeing. It can also impact on the lives of families, friends and carers.

Four researchers from the north of England carried out some patient-led research into the impact of cardiomyopathy, and have published their findings in a report called 'Cardiomyopathy Patients’ Experiences of Cardiac Care Services'.

During 2016, Cathy Stark, Ian Mackersie and Vera Mackersie, along with Julie Goodfellow, a cardiac genetics nurse, carried out the research. 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.

“I want to know what patients want from health staff when they are diagnosed, going through a crisis. What they get. What is done well? What could be done better? I need their experiences.”
Julie Goodfellow

The group wanted to find out what parts of care service work well (and what didn’t work so well), what patients found helpful on their journey (and where and when the holes in services appeared), and what would improve experiences of care services.

What their research found

The report found:

  • there is a need for information and support at key times on the 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 (as respondents experienced a paucity of information and support at these times);
  • respondents would have liked ’someone’ to go to with their unanswered questions and concerns. The idea of a ‘specialist nurse for cardiomyopathy’ was suggested to help guide respondents ‘through the maze’;
  • respondents’ experiences of medical care were mixed across all elements of the health care system (consultant cardiologists, GPs, specialist nurses, secondary and tertiary hospitals). Confidence in tertiary hospitals and specialist nurses was evident and examples of ‘good practice’ emerged;
  • psychological support was often lacking at diagnosis and as people continued to live with cardiomyopathy, emotional issues arose such as fear for the future and the impact of the condition on family members;
  • practical concerns arose for patients and carers around exercise, work and social activities; and
  • overall, the respondents were deeply affected by a diagnosis of cardiomyopathy, and had experienced both positive and negative aspects of a health care system that does not appear to fully understand cardiomyopathy or the impact it has on the lives of patients and carers.

Read the full report

The four researchers are all supporters of Cardiomyopathy UK, and have kindly agreed to us publishing their research report here. The image above is taken from the report.

© Cardiomyopathy UK. April 2017.