Survey highlights problems in the care pathway

9th July 2019

Our latest survey shows that people with cardiomyopathy and myocarditis are being left at risk due to inefficient 'care pathways' – the journey from diagnosis to treatment. 

Family members are also at risk, as individuals are not told the condition can be genetic and screening for parents, siblings and children is being overlooked.

The survey identified severe gaps in services that are leaving the lives of people with cardiomyopathy  and thousands of family members at risk. The research has also revealed longer waiting times and an indirect and inefficient care pathway.

We questioned more than 590 people living with the condition and found declining standards throughout the entire care pathway:

  • Care pathway: only a small number of individuals (13%) are experiencing the ideal care pathway, from first reporting symptoms to treating the disease. This has become more inefficient since 2017, with 16% experiencing the ideal care pathway two years ago. A third (32%) of patients were not satisfied with their experience.
  • Family screening: half of patients are not being told that the condition could be genetic, leaving thousands of family members at risk.
  • Cardiologist referral times: waiting times to see cardiologists are lengthening – 54% of patients are being left unprotected for more than a month before seeing a cardiologist, with 13% waiting for four months to a year.

In response, we will work with local healthcare providers and commissioners to share best practice, identify improvements and help to find local solutions that will improve the diagnosis and treatment pathway across the UK.

We are also calling on the government to ensure that funding is available to improve access to the specialist services that people with cardiomyopathy need.

Joel Rose, Chief Executive at Cardiomyopathy UK, said:

“Left unmanaged, cardiomyopathy can lead to cardiac arrest which makes efficient diagnosis and treatment of the disease absolutely critical. As such, it’s deeply concerning to see from our research that standards in the care pathway for cardiomyopathy are declining.

“Over the last 30 years, improvements in genetic screening and medicines have completely transformed the potential to diagnose and treat cardiomyopathy – and we’ve also seen that detection amongst GPs has improved, with numbers being immediately referred to cardiologists going up by more than 10%. But these improvements and breakthroughs in detection, genetics and medicine are pointless unless healthcare professionals are able to screen and treat cardiomyopathy patients and their families efficiently.

“It’s clear that we need to work together to ensure cardiomyopathy patients are receiving the right tests, treatment, specialist care and support, which could save lives. A diagnosis of cardiomyopathy can be life-changing. But with the right treatment and support most cardiomyopathy patients can live full and active lives.”

The charity has worked with our service users, clinical advisers and other stakeholders to develop the ideal care pathway:

1) Direct referral to a cardiologist when symptoms of cardiomyopathy are recognised

2) Seen by a cardiologist and diagnosed within a month

3) Told about the genetic nature of the disease on diagnosis

4) Family history of heart disease drawn up and/or genetic testing used to identify "at risk" family members

5) Family members who are identified as potential "at risk" to be tested within one month

6) Supported throughout the family screening process by a genetics counsellor or other appropriate clinician.

Dr. Gerry Carr-White, Consultant Cardiologist at Guy’s and St Thomas’s Hospital, said:

“It’s clear where we are falling down in treating cardiomyopathy patients, and we need to work in a different way to improve outcomes for these patients and their families. We have to work across networks, train more specialists in inherited cardiac disease, and improve education across both primary and secondary care. These issues can only be addressed by appropriate funding and national prioritisation.”