Organ donation

POSITION STATEMENT

Children’s Heart Federation position statement on organ donation

17^th November 2008

Children's Heart Federation welcomes any debate that raises public awareness about the value and importance of organ and tissue donation and transplantation. We recognise that many people’s lives will be saved through organ transplantation, and believe that people should be encouraged to donate their organs through a “required request” system rather than a presumed consent protocol.

Even across the 22 member organisations that make up the Children's Heart Federation, there is a range of views on organ donation. Families whose children are likely to need a heart transplant are more in favour of an opt-out system. Other families whose children need corrective heart surgery may be more cautious.

Whilst believing strongly in the benefits of organ transplantation, we are mindful of the risk of causing major distress to a close relative or partner who does not wish the organs to be removed from their loved one. We fear that the ill-will caused by presumed consent may outweigh any advantages in the longer term.

We are also aware of the medical risks involved in the removal of organs without discussion with relatives as families are a valuable source of information about their loved one's previous health.  We also feel it is important to take account of the emotions involved in receiving an organ which many transplant recipients say is easier to accept when they know it has been positively given by the deceased.

Children's Heart Federation is also aware that according to research undertaken by Transplant UK, the majority of relatives agree to organ donation and that many families report that knowing that their loved one’s organs have saved lives gives them great comfort. We therefore believe that a policy of "required request" (a system which is in operation in the United States) should be explored further in the UK. Such a policy would involve trained clinicians asking the family of a patient who is declared dead following brain stem testing, whether their tissues and organs may be used for the purposes of transplantation. We believe that this is likely to increase the number of donated organs. 

Ends

For media enquiries contact the Media Office on 020 7422 0630.

Notes to editors

• Congenital heart conditions are the most common birth defect in the UK, and a leading cause of birth-defect related deaths world-wide.
• Heart transplant is the only form of treatment for some of the more life-threatening congenital heart defects such as: transposition of the great arteries, coarctation/interrupted aortic arch, aortic stenosis, pulmonary atresia and hypoplastic left heart/mitral atresia.
• GIFT – The Children’s Transplant Charity offers support to children and families who are affected by transplantation, Tel: 0845 0945810, info@giftctc.org.uk, www.giftctc.org.uk.
• The Children`s Heart Federation is an umbrella organisation with 22 member organisations, dedicated to helping children with congenital or acquired heart disease and their families in the UK and Ireland.
• CHF provides information and support through its freephone helpline 0808 808 5000, open Monday to Friday 9.30am to 9.30pm, and its website www.chfed.org.uk