Cardiomyopathy is the leading reason for heart transplants.
If you’re fit and healthy, then donating your organs is likely to be the last thing on your mind – but it’s a vital decision you can make now that could save lives in the future.
Right now, there are around 295 people waiting for a new heart in the UK. The majority of these people have cardiomyopathy. The number of heart transplants per year is around 180.
In the UK, one in three people are registered as donors.
The law around organ donation in England has now changed. The introduction of Max and Kiera’s Law (bought in May 2020) now makes all adults potential organ donors unless they opt out. This law will greatly increase the number of people on the donor register and make a clear statement about the importance of organ donation.
This is a positive first step that presents an opportunity to have much-needed conversations about individual wishes and helps create a culture where organ donation is the norm. However we have a lot more work to do to ensure that this change in the law will save as many lives as possible.
- A well-funded national campaign to ensure the public is aware of the changes to the system
- More work to encourage individuals to make active decisions to sign up to the organ donation register and discuss their wishes with their family. If individuals haven’t had conversations with loved ones and something does happen, their next of kin can challenge or delay any donation, which could lead to a wasted heart
- Appropriate funding and training for NHS staff in the donation and transplantation service and continual assessment of the system to ensure no opportunity to achieve successful transplantation is missed
Without these measures, any change in law is in danger of having little impact. Put simply, if we double the amount of available hearts but do not double the capacity to transplant them, these potentially life-saving organs could be wasted.
A donated heart can mean a whole new chance at life for someone living with advanced heart failure due to cardiomyopathy. That’s why we encourage everyone to consider signing up to the register and telling their family about their wishes.
Visit the NHS organ donor register for more information about organ donation and how to register your decision.
While Cardiomyopathy UK understands the pain that the death of a loved one causes, and why cardiac deaths heighten desire for introducing national, un-targeted cardiovascular screening for young people, we know this is not the answer.
While the issue should continue to be reviewed, evidence from the National Screening Committee has shown that un-targeted screening would not work. This is because it only provides a snapshot of an individuals’ heart at that moment and heart conditions, such as cardiomyopathy, can develop at any time. To allow for changes in heart health, screenings would have to occur regularly, which the NHS cannot provide.
Instead of an un-targeted approach, the immediate obligation for the government, NHS, clinicians, and researchers should be on targeted cardiac screenings. With the majority of heart conditions, including cardiomyopathy, being inherited, it is most efficient for screenings to be focused on families where we know cardiomyopathy to be present. This way, we can strategically focus on diagnosing those who are most likely to have, or develop, heart conditions.
To reduce the number of deaths caused by cardiomyopathy, we must also focus on education for clinicians and the public that raises awareness of cardiomyopathy and its hereditary nature. By encouraging people to have conversations with their families about any history of heart disease, and letting their GPs know, means those at risk will be better prepared.
If you would like to speak to somebody about screening for cardiomyopathy please contact 01494 791224.