The campaign for the provision of INR machines continues, if you would like to be involved or support the campaign email firstname.lastname@example.org.
There are two types of stroke:
1. ischaemic (clot) which is caused by a blockage cutting off the blood supply to the brain. The blockage can be caused by a blood clot forming in an artery leading to the brain or within one of the small vessels deep inside the brain;
2. haemorrhagic (bleed) which is caused when a blood vessel bursts within or on the surface of the brain. Because blood leaks out into the brain tissue at high pressure, the damage caused in a haemorrhagic stroke can be greater than the effects caused by strokes due to a blockage cutting off the blood supply to the brain.
The National Institute for Health and Care Excellence (NICE) Guidance
However, it is possible to use a self-testing coagulometer to do the tests at home.
The National Institute for Health and Care Excellence (NICE) reviewed two coagulometers that monitor blood clotting in people taking long-term anti-blood clotting drugs (such as warfarin) to reduce their risk of blood clots.
These tests allow people taking anti-blood clotting drugs to monitor blood clotting themselves. They can then change their dose in agreement with their health professional.
In Diagnostics Guidance 14 (DG14) NICE recommended:
Continuing the INR Self-monitoring Campaign
Sadly, few hospital trusts or GP practices are complying with DG14 and so CHF along with the members of ACSMA are continuing to campaign for:
CHF has – subject to funding – been a major provider of INR machines to families that meet the referral criteria.
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 if the NICE Guidance is followed and all patients who meet the criteria are provided with an INR machine on prescription.
That is why, on behalf of all the families who could benefit, we ask you to support this important and vital campaign.
If you are having difficulty getting an INR machine please contact CHF via: email@example.com.
State of the Nation, Stroke Statistics published by the Stroke Association Jan 2016
NICE Diagnostic Guidance [DG14]
If you have a story to tell about the benefits of an INR machine to a child on anticoagulants email the details to firstname.lastname@example.org it will help the campaign greatly.
Katherine from Surrey 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 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”.
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 nine 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, six 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 three 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 family’s 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 Easton can attend school like the other children in his class”.