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.

October 2017

During 2016 we have been working with our service users to gather more information about their experiences of their own diagnosis care and treatment. This information was gathered from face to face meetings, feed-back from service users and a national survey that received over 750 responses.

We have also been talking to NHS leaders and members of our Clinical Advisory Group, which represents leading experts in the field of cardiomyopathy, to get their views on what improvements could be made and the barriers that they face in providing appropriate care and treatment

We have brought all these ideas together to create our national plan for cardiomyopathy. You can read the full plan here

The plan lists 15 key action points :

1. Create a simple GP card for patients to take with them to appointments. 

2. Offer short online GP training and work with the Royal College of General Practitioners to promote GP resources. 

3. Work as part of the Alliance for Heart Failure and in partnership with the British society of Echocardiology to lobby for improved access to testing nationally. 

4. Bring together the Association of European Cardiovascular Pathologists, the UK Cardiac Pathology Network and leading coroners to identify how they can improve detection and communication of cardiomyopathy among their colleges. 

5. Work with the British Heart Foundation as part of their steering committee to help direct their work to increase access to genetic testing in hospitals nationwide.

6. We will work with cardiologist and commissioners in local areas to help them to agree local care pathways and create the infrastructure they need to share knowledge. 

7. We will provide learning opportunities for cardiologists nationwide enabling them to access and network with leading cardiomyopathy experts. 

8. We will work as part of the Alliance for Heart Failure to give evidence to the All Party Parliamentary Group on Heart Disease that shows the value of specialist care and treatment. 

9. We will work with the Health Quality Improvement Partnership to ensure that cardiomyopathy data is collected and reported on as part of their national audit of cardiac services. We will also persuade the British Society of Heart Failure to include cardiomyopathy data in their public reports.
10. We will support efforts to develop patient centred outcomes measurements that can give a really useful indicator of how well a person have been treated and how their life has changed following treatment.

11. We will bring together patients, clinicians and experts in the field of mental health to develop clear guidance on how best to support the emotional needs of people with cardiomyopathy. 

12. We will work to grow the network of local cardiomyopathy support groups throughout the country and demonstrate the impact of these groups in helping individuals to cope with cardiomyopathy. 

13. We will work to develop support services for young people, especially those who are moving into adulthood so that they can make the appropriate lifestyle and attitudinal changes they need to help them live with cardiomyopathy. 

14. We will work with the British Association for Nursing in Cardiovascular Care and the British Society of Heart Failure to provide education support to heart failure nurses so that they can better understand the needs of people with cardiomyopathy. 

15. We will encourage people with cardiomyopathy to participate in local health decision making organisations and forum to help ensure that the long-term needs of people with cardiomyopathy are considered and that the voice of people with cardiomyopathy is heard.

We know from discussions with individuals, family members and professionals that the emotional impact of having a diagnosis of cardiomyopathy and subsequently living with the condition can be significant. However, this is something for which there is currently little support available.

In order to understand more about the experiences of people with cardiomyopathy, and those close to and supporting them, we created two surveys to focus on the experiences, needs and wishes of people with cardiomyopathy and family, friends and carers of people with cardiomyopathy.

You can read a full report on this survey and its conclusions here

In October 2016 we brought together leading mental health experts and cardiologist to look at the results of these surveys and draw up some recommendations on how the psychological needs of people affected by cardiomyopathy could be met. These include;

1) To make sure that we acknowledge the psychological impact of cardiomyopathy in our literature, events and everything that we do. This way we can make it easier for people to talk about this issue.

2) To offer mental health "first aid" training to our staff and volunteers so that we have the skills we need to offer support.

3) To create a new  resource for both people with cardiomyopathy and for their carers and loved ones that highlight the importance of mood management.

4) To increase the availability of peer support by running more support groups, some just for carers, and offering more people the chance to talk to one of our support volunteers.

5) To persuade clinicians to add a measure of emotional well being as a "vital sign" to be checked by cardiologist 

The charity will be acting on these recommendations over the next year.  

Cardiomyopathy UK supports organ donation, and encourages you to consider joining the NHS organ donor register.

Cardiomyopathy is the leading reason for heart transplants.

Right now, there are around 295 people waiting for a new heart in the UK. The majority of these people have cardiomyopathy.

There is a real shortage of organ donors in the UK, with only one in three people registered as donors. Only with a significant increase in the number of people on the organ donor register can we increase the number of heart transplants, which currently sits at around 180 a year.

The recent agreed change in law in England to an “opt-out” system, which will come into play in 2020, means an individual is automatically presumed to have consented to being a donor. 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.

There is however a lot more work to be done to ensure that this change in the law will save as many lives as possible. We need

1.    A well-funded national campaign to ensure the public is aware of the changes to the system

2.    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

3.    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.

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.

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.