CHF with a number of other national charities has formed The Anti-Coagulation Self-Monitoring Alliance (ACSMA). The Alliance is campaigning to see greater access, via prescription, to INR self-monitoring technology for children on warfarin. The alliance is also seeking to raise awareness of the benefits of self-monitoring and aims to ensure that families are better equipped to have informed discussions with their healthcare professionals on this topic.

The Children’s Heart Federation has supported children with heart conditions and their families for almost 25 years. Along with a number of other charities we are supporting this new campaign, as this change would make such a big difference to many families who we support.

Currently we do what we can to provide machines to families who want them, or are referred to us by their health professional. We hear time and time again stories of families having to make journeys many hours long, week in week out, simply to conduct a short INR test which they could, with appropriate support, carry out at home. The expense of travel, the disruption to parents work, disturbance to the child’s schooling, the long sometimes difficult journeys could all be minimised or prevented with this small change.

To find out more about the campaign of to show your support please visit www.chfed.org.uk/INR

Easton’s Story

Easton is 14 years old and has complex CHD. He has had 3 open heart surgeries and he will have to take warfarin for the rest of his life.

Caroline, Easton’s mum said,” It took a long time to stabilise Easton’s INR when he came out of hospital and we needed to travel 9 miles each way to have his bloods taken at our local hospital twice a week, during this time Easton missed a lot of school as his appointments were always in the mornings, 6 months later when Easton’s INR was largely stable we still had to go at least once a week. When Easton was ever poorly even with the slightest cold his INR would change out of range quickly and has at some points needed him to be admitted to hospital for observation, again affecting his school attendance”.