Families across Tameside, Saddleworth and the wider North West are joining a growing call for the NHS to formally recognise Congenital Heart Disease (CHD) as a lifelong condition.
The appeal comes during CHD Awareness Week, which runs until 14 February 2026, and is being led by volunteers representing patients and families from across the region — including Greater Manchester, North Wales and the Isle of Man.
CHD is the most common birth condition in the UK, with a baby born every two hours with a serious heart defect. While modern surgery means many children now survive into adulthood, the condition cannot be cured. Most patients require ongoing monitoring, specialist care and support throughout their lives.
The North West Patient Public Voice (PPV) group — made up entirely of people living with CHD or caring for someone who does — says formal recognition would make a meaningful difference for local families. They argue it would help GPs, nurses and emergency teams provide faster, more consistent care, while giving NHS planners clearer data on the number of CHD patients and the additional health needs they may face.
The group also works closely with a new Learning Disability Forum to ensure that CHD patients with additional needs are not overlooked.
Janet Rathburn, Chair of the PPV group, said the impact of a CHD diagnosis is felt across entire families in towns like Ashton, Hyde, Stalybridge and Mossley:
“Whether your child, grandchild or another close family member is diagnosed with Congenital Heart Disease — or you’re living with CHD yourself — it can feel like your world has been turned upside down.
We aren’t clinical staff, but we are families and patients who have walked this path. We’re determined that everyone with CHD gets the support they deserve from prenatal care through childhood, early adulthood and into later life.”
She added that recognising CHD as a lifelong condition would be a major step forward:
“An important part of our volunteering is making sure NHS leaders hear the patient voice. Official recognition would help build wider understanding and ensure people with CHD can live as full and supported a life as possible.”
The PPV group is encouraging families in Tameside and Saddleworth affected by CHD to share their experiences and support the campaign during Awareness Week.
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