Two South Cumbrians have spoken out on the importance of a volunteer group which supports people born with congenital heart disease (CHD) and their families.

The Patient and Public Voice Partner (PPV) group, which was set up at the height of the pandemic, is part of the Congenital Heart Network for the North West, North Wales, and the Isle of Man.

It is made up of 13 volunteers aged between 18 and 79, ranging from parents or close relatives of children with CHD to retired people living with the condition themselves.

The group is now calling for more volunteers to join them in their work.

Heather Lawson from Barrow said: "The PPV group has given me the opportunity to shine a light on an amazing group of congenital heart patients - those with learning difficulties.

"Their thoughts and opinions are vital if we are to continue to improve NHS services for all."

Heather Sewell from Milnthorpe, who has a serious congenital heart condition, also praised the group.

She said: "I joined the PPV group earlier this year because I’ve benefited directly from congenital heart services throughout my life and I wanted to do something positive for fellow patients and their families and carers.

"We’re always on the lookout for new volunteers to help to improve the care that is provided to congenital heart patients.

"So, if you have a child or close relative with a heart condition – or have grown up with a heart condition yourself – and have a few hours each month to join us at virtual meetings, we’d love to hear from you."

The group has achieved a lot in the past four years, including supporting a major patient experience survey to improve services for people with congenital heart disease.

They have also held patient information days for patients and their families to meet staff and local charities, as well as hear talks about patients living with CHD and the latest advances in treatments.

The group has also supported the formation of a ‘Learning Disability Forum’ including patients with learning disabilities and autism, their family members and local charities.

As well as leading on the development of a recent Learning Disability Open Day, they have developed a new checklist of ‘reasonable adjustments’ for hospital visits and new bags of ‘distraction’ toys to help entertain children awaiting hospital treatment for congenital heart conditions.

The group is using World Heart Day on September 29 to highlight its achievements and call for more volunteers to help drive its work forward.

To get involved with the PPV group, contact northwestchdnetwork@alderhey.nhs.uk.