Call our Nurse Helpline
Call 0800 018 1024
Monday to Friday, 8.30am to 4.30pm
(not open on bank holidays)
Our helpline is staffed by our team of specialist cardiac nurses: Jayne and Emma.
Speak to our cardiomyopathy nurse specialists
If you are worried about cardiomyopathy, you do not have to work it out on your own. Our Cardiomyopathy UK Specialist Nurses are here to listen, answer your questions and share their expertise for as long as you need.
You can speak to our nurses for:
- General advice and support about cardiomyopathy
- Specialist advice about genetics and inherited risk
All of this is free and confidential.
You can talk to our nurses about anything that is on your mind, including:
- Worries about possible symptoms
- Whether you should see your GP or specialist
- Understanding your diagnosis
- Treatment options and side effects
- Genetic testing
- How cardiomyopathy is affecting your life, mood or relationships
Anyone can call, including:
- People who think they might have cardiomyopathy
- People who have just been diagnosed
- People who have been living with cardiomyopathy for a long time
- Partners, family members, friends or carers.
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What our nurses cannot do
To keep you safe, there are some things our nurses are not able to provide.
They cannot:
- Access or update your medical notes
- Liaise directly with your GP or hospital team
- Give medical clearance for work, driving or sport
- Interpret electrocardiograms (ECGs), rhythm strips, echocardiograms, cardiac MRI
scans or any other clinical tests - Interpret direct to consumer genetic test results or genetic variant reports
They can, however, help you understand the type of test you have had and suggest helpful questions to ask your healthcare team.
You can speak to our nurses about anything - worries about potential symptoms, whether you should see a GP, understanding your diagnosis, treatment, side effects, genetic testing or simply about how you’re feeling.
Anyone can call our helpline, whether you have a diagnosis yourself or care for someone else with cardiomyopathy. Whether you’re unsure if you might have cardiomyopathy, are newly diagnosed or have been living with the condition for some time, our nurses are here for you.
Genetic advice and support for you and your family
As part of our Nurse Helpline, we also offer specialist genetic advice and support.
Many people feel unsure about what a cardiomyopathy diagnosis means for their family or future children. You might want to talk about:
- Whether cardiomyopathy can run in families
- Who in the family might need screening (tests)
- Whether genetic testing is right for you
- How to talk to relatives about possible inherited risk
Our Genetic Advice Helpline can help you make sense of this information and support you to make informed choices that feel right for you and your family.
Our nurses have experience working in inherited cardiac conditions, including cardiomyopathy. They offer a safe, confidential space to talk through your questions and concerns.
How our genetic advice service works
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If you contact us about genetics, our specialist nurse team will arrange a call back within our working hours. During this call, they can talk through any questions you have about cardiomyopathy and your family, whether you:
- Are right at the start of your journey
- Have been diagnosed for a while
- Know that another family member has been diagnosed
Our nurse team can help you to:
Understand your family history
For many people, the first step is working out whether cardiomyopathy could run in the family. We can:
- Talk through your family history information
- Help you complete a family history questionnaire
- Help you feel confident that you are giving accurate and useful information
Get advice on referrals and next steps If family screening or a specialist assessment is advised, we can:
- Provide a supporting letter by email for you to give to your GP
- Explain national guidance and why a referral to an inherited cardiac conditions service might be appropriate
- Help you prepare for talking to your GP, including what to say and what to ask
Get clear information about genetic testing Genetic testing can feel like a big step. Our nurses can explain:
- How genetic testing works
- What happens during the process
- How long results usually take
- What different types of results can mean
- What testing can and cannot tell you
We will also talk through the practical and emotional sides of testing, including what it might mean for children, siblings or wider family members.
Important: Our nurse team cannot interpret clinical genetic results, genetic variant reports or direct to consumer genetic testing results. They can explain common terms and signpost you to the right specialist services.
Understand results and inherited risk
If you have already been referred for genetic testing, our nurses can:
- Help explain common terminology you might see in letters or leaflets
- Talk about who in the family might need screening and what that could involve
- Help you think through how to share information with relatives
A supportive space to talk
People often contact us because they feel worried, confused or unsure how to talk to their family. Others simply want to check they have understood information correctly.
Whatever your situation, our nurses offer a calm, supportive and non-judgemental space where you can:
- Ask questions at your own pace
- Explore your options
Feel heard and understood
Extra support you can tap into
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Alongside our nurse helpline and genetic advice, we offer a range of resources so you can choose the support that suits you best:
- Nurse led genetic online support groups
Meet other people affected by cardiomyopathy, share experiences and ask questions in a friendly group setting. Find out more: cardiomyopathy.org/find-support-groups - Specialist nurse webinars on genetics
Watch our webinars on genetics and genetic testing, including sessions with an NHS genetic counsellor, on our YouTube channel.
https://www.youtube.com/watch?v=i5ij1q_M-wg - Podcast: "Cardiomyopathy, is it all in the genes?"
https://youtu.be/KaxPrmw85vk?si=5E38gpL6t_iuCUfq
A clear, plain English explanation of inherited risk and genetics in cardiomyopathy.
These resources can help you build confidence with the basics or share clear explanations with family members.
Quality assured support you can trust
Your call to the Nurse Helpline is strictly confidential so you can talk openly and know that our helpline is a safe, confidential space.
Cardiomyopathy UK is committed to:
- Providing non-discriminatory services
- Treating everyone with respect and dignity
- Taking all complaints seriously and investigating them promptly
You can read more in our confidentiality and complaints policies on our website:
We're also a member of the Helplines Partnership
The HLP help us to:
- Deliver the best service we can
- Connect and work in partnership with other helplines Promote excellence, innovation and inclusivity
- Maintain high standards across our helpline
Speak with our Nurse Specialists
If you would like to talk things through:
Call our Nurse Helpline:
📞 0800 018 1024
🕒 Monday to Friday, 8.30am to 4.30pm (not open on bank holidays)
If you prefer online support, you can also reach us through website live chat at: www.cardiomyopathy.org
Whether you need general advice about cardiomyopathy or specialist genetic support, our nurse team is here for you.
More Information
