INR Self-monitoring Campaign

There are more than 1.2 million people in the UK on warfarin of which less than two percent benefit from self-monitoring, despite evidence that it can cut the risk of death by nearly two-fifths and more than halve the risk of strokes.

CHF, along with a number of other national charities has formed The AntiCoagulation Self-Monitoring Alliance (ACSMA). The Alliance is campaigning with the specific objective of achieving greater access via prescription to INR self-monitoring technology for patients receiving warfarin therapy. The alliance is also seeking to raise awareness of the benefits of self-monitoring and aims to ensure that patients are 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 countless stories of families having to make long journeys, 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, and disturbance to the child’s schooling, as well as the long and sometimes difficult journeys could all be minimised or prevented with this small change.

This is why, on behalf of all the families who could benefit, we ask you to get behind and support this fantastic campaign.

 

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Why this campaign is so important to families:

 

Katherine’s Story 

Katherine from Surrey who is now 16 years old was born with a heart condition called Pulmonary Atresia. She had to have major life-threatening open heart surgery when she was 7 years old and has been battling her condition ever since.

Rachel, Katherine’s mum said, “Taking her for the blood tests over the years has been pretty harrowing, there is no reasoning with a terrified, crying child who is begging you not to have it done. Having it done at home is so much easier; we’re so lucky to now have a machine. It’s safe, easy and practical – it revolutionises your whole life”.

Katherine who has just finished her exams said, “I’m so grateful we had a machine to monitor my INR at home. During GCSEs we didn’t have the disruption of having to go to the hospital for every check – exams are hard enough without having to take time out. Not having it would have meant I would have had to miss assessments, deadlines maybe even exams. It would have really affected my results and my whole future”.

Easton’s Story 

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 in to hospital for observation, again affecting his school attendance.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.

“When we could home test with an INR machine our whole families lives changed for the better. It’s given us the freedom to take it on holiday, we don’t have to take Easton to the hospital to do it.Easton used to start getting upset as soon as we entered the hospital car park. We all have more control over our life, freedom to travel, greater control keeping Easton’s condition stable. It also means we can more easily down a job and Easton can attending school like the other children in his class”.

 

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