Today (9 February) The Children’s Heart Federation is holding a Parliamentary Reception during Heart Month to raise awareness of the need for more heart donors for children and young people.  Opinion polls in the UK show the vast majority of population is in favour of organ donation but evidence shows low levels of awareness and the need for transplants. Across the UK there are 6,893 people waiting for transplants.

The need for heart donors is being highlighted by the Children’s Heart Federation as the consent rate for organ donation remains the static while children with congenital heart conditions is growing each year due to the tremendous developments in surgical treatment and care . However, many of these children will need a heart transplant in the future.

Hosted by Toby Perkins MP, speakers at the event include; Dr Clive Lewis who supports the UK’s largest heart transplant programme. Parents of Freya, who received a heart transplant when she was 5yrs old, and Scott Rutherford from Newcastle, who received a heart transplant at 14yrs old, will talk about their experiences.

Nick and Claire Bingham, parents of Freya, from Chesterfield said “Our world turned upside down when we received the news that Freya’s heart was failing. It was a living nightmare. We arrived at the hospital in the middle of the night and Freya was put on a Berlin Heart Machine for 63 agonising days. Thankfully we received a heart but without the donor Freya would not be alive today. All our family are on the register now.”

Toby Perkins, MP, said “After meeting the Bingham family, and hearing how important a transplant was for their daughter, I was determined to do what I can to raise awareness about this important issue.  I hope this event will contribute to this campaign and I’m delighted that MPs and ministers will get to hear first-hand from a family on this important subject.”

Anne Keatley Clarke, Chief Executive of Children’s Heart Federation, said:

“The Children’s Heart Federation wants to give heart children the best chance of life. We’ve come a long way with medical advancements for these children over the years – we now need to look to their future The charity is committed to working closely with government, industry and stakeholders to raise awareness of the needs of these heart children and ensuring that patients with heart failure due to congenital heart disease have the same chance of receiving a donor heart as a patient with heart failure due to any other cause.”

Further information:
Emma Pelling, emma@pellingpr.co.uk, t. 020 7624 7533 / 07958 558172
@CHFED #Hearts4Kids

Notes:

• Case studies are available for interview please call the numbers above.
• The Children’s Heart Federation (CHF) is the UK’s leading children’s heart charity and an umbrella organisation for 21 member groups who support heart children and their families.
• CHF supports families through its information service, small grant programmes, peer support events and provision of equipment.
• The charity also lobbies for changes to the health, social care and education systems for the benefit of heart families.