Contact Info

North West, North Wales & The Isle of Man Congenital Heart Disease Network, Alder Hey Children’s NHS Foundation Trust Email:

northwestchdnetwork@alderhey.nhs.uk

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Join us for a new ❤️AEPC Heart beats for education - #Pregnancy in complex #CHD

🤰🏼Case presentation
🫀Pregnancy in Fontan
❓Challenging cases & key learnings

🗓️ Join us on 3 June 2026 | 17:00–18:30CEST
🔗 https://bit.ly/3OFXBse

#PediatricCardiology #YoungAEPC #ACHD

Our Network Lead Nurse attended the Liverpool and Sefton Mencap Conference to learn about the I’m In campaign. Some people with CHD also have a learning disability, joining the Learning Disability Register is key in ensuring they receive the adjustments and support they need.

As a CHD patient, you may have been told to avoid certain activities or be concerned about side effects but carefully-chosen exercises suitable for your health conditions, will provide benefits that outweigh the risks.

Read more in our Exercise leaflet:
https://sfhearts.org.uk/leaflets/

Living with CHD means you need to be mindful in the heat. High temperatures can put extra strain on your heart so take care of yourself...

💧 Stay hydrated
🧢 Wear a hat and light clothing
⛱️ Stick to the shade or stay indoors
📱 Let someone know if you feel unwell

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News

Patient Voice at the Heart of Local ACHD Care

Lucy, (featured left above) one of our North West CHD Network patient representatives, recently joined the Adult Congenital Heart Disease (ACHD) outreach clinic alongside Anna Harrison,  ACHD nurse specialist lead nurse for the ACHD service, (featured right above) and Dr Vas Papaioannou, ACHD cardiologist. Together, they form part of the dedicated ACHD team from Liverpool Heart and Chest Hospital, who run monthly outreach clinics at Blackpool Victoria Hospital to bring specialist care closer to the patients home.

Outreach Clinics

These outreach clinics mean people can access the same expert ACHD care they would receive at Liverpool Heart and Chest, but without having to travel as far. For many patients, this makes a real difference, reducing journey times, easing stress, and helping them fit vital appointments more easily into everyday life.

Lucy spent time speaking with both staff and patients, gaining valuable insight into the clinic experience. She was made very welcome by the team and by fellow patients, highlighting the supportive and inclusive environment created at these sessions.

Ensuring the patient voice is central

Importantly, Lucy’s involvement reflects our commitment to ensuring the patient voice is central to service development. Hearing directly from patients about what works well and where improvements could be made helps shape care that truly meets people’s needs. Having patient representatives present in clinics like this strengthens partnership working between services and the community, ensuring lived experience continues to inform and improve ACHD care across the region.

Thank You

We would like to thank Lucy and the ACHD team for their warm welcome and ongoing dedication to delivering high-quality specialist care closer to home

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