We’re delighted to share the results of a regional research project led by Dr Helen Widdrington, exploring the wellbeing challenges faced by those living with congenital heart disease (CHD). Many patients, families, and healthcare staff from across the region took part by completing questionnaires, identifying key challenges, and sharing ideas to improve support services.

The study highlighted nine main challenges that children and families find most difficult when living with CHD — including limited facilities and support, the impact on family life, and psychological difficulties.

Participants also offered valuable suggestions for improvement, such as increasing education and awareness about CHD for families, schools, and healthcare teams, and developing practical resources like videos, leaflets, and websites.

The NENC team are now using these insights to create new resources, support tools, and educational materials for both staff and families.

But the work doesn’t stop here — your input is still needed to help shape and develop future services!
If you’d like to get involved, please email nuth.enquiries-nencchdn@nhs.net

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