Sharing this for anyone wishing to get involved - copying this update from PPV

"Patients and families call on NHS to recognise Congenital Heart Disease (CHD) as a lifelong condition

Ahead of Congenital Heart Disease (CHD) Awareness Week (7–14 February 2026), a dedicated group of volunteers representing patients and families is calling on NHS leaders to officially recognise CHD as a lifelong condition – alongside the likes of epilepsy, asthma and type 1 diabetes.

Every 2 hours a baby is born in the UK with a serious heart condition, making it the most common birth condition in the UK. Although surgical repairs can help many congenital heart patients live long and largely healthy lives, the underlying condition cannot be ‘cured’ and most patients need ongoing support and medical follow-up over many years and decades.

The Patient Public Voice (PPV) group for the North West, North Wales and the Isle of Man is made up entirely of individuals and families with first-hand experience of living with CHD, working alongside a recently-formed Learning Disability Forum for CHD patients with additional needs. Now these volunteers are calling on NHS leaders to formally recognise Congenital Heart Disease as a lifelong (long term) condition.

The move would help doctors, nurses and other medical professionals to streamline access to primary care and a range of specialised support, especially in emergencies. It would also give the NHS commissioners planning and developing services more accurate, in-depth data about the number of CHD patients nationally, the support they are accessing and additional health conditions and illnesses which may affect their care.

Janet Rathburn, Chairperson of the PPV group in the North West, North Wales and the Isle of Man, said: "Whether your child, grandchild or other close family member is diagnosed with Congenital Heart Disease, or you are 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 and are determined that everyone with CHD gets the support they deserve from prenatal care through childhood and early adulthood into their later years.

“An important part of our volunteering activity centres on lobbying NHS leaders to help influence the decisions they make from the perspective of patients. That’s why we’re calling on the NHS to officially recognise CHD as a lifelong condition and make an important step towards more widespread understanding and tailored support to help people live as full a life as possible”.

Further background detail -

The Patient and Public Voice Partner (PPV) group for the North West, North Wales and the Isle of Man represents patients who receive/have received specialist congenital heart care across the North West, North Wales and the Isle of Man. The group has recently created this video featuring real-life stories of people born with heart conditions and their families, which is being used in health and education settings regionally.

The PPV is an extension of the region’s Congenital Heart Network, which has just launched a new-look website to coincide with Congenital Heart Disease (CHD) Awareness Week 2026, offering practical information for families from prenatal diagnosis through to adult care: https://www.northwestchdnetwork.nhs.uk/

How to get involved in the PPV:

The Patient and Public Voice Partner (PPV) is keen to hear from families and patients throughout Lancashire, South Cumbria, Cheshire, Merseyside, Greater Manchester, North Wales and the Isle of Man. To find out more about getting involved with the PPV group, contact: northwestchdnetwork@alderhey.nhs.uk

Save the Date: Saturday 7th March 2026

The PPV group’s next Patient Information Day will take place at the Institute in the Park, Alder Hey Children’s Hospital, Liverpool on 7 March. This event is a chance for both patients and families to hear from leading experts in both paediatrics and adult congenital heart care and, most importantly, from patients who are thriving while living with CHD. Register at: www.northwestchdnetwork.nhs.uk"