Hi-tech machines are helping youngsters facing frequent hospital visits. Katie Baldwin found out how.
Coping with your child going through open heart surgery is difficult enough. But for many families the cycle of constant medical appointments continues for many months or years.
And for some, they could face the prospect of hospital visits as much as three or four times a week for the rest of their lives.
That’s if it wasn’t for a small machine which makes all the difference.
Sarah Hepworth, whose son David uses a machine to test his blood in order to see how much of the drug Warfarin he needs, said it had changed their life.
“It’s a brilliant machine,” she said.
“The kits are so small, you can take them on holiday. Yes they’re quite expensive, but once it’s bought, it’s bought.”
The 10-year-old from Wakefield was born six weeks prematurely and after being transferred from Pontefract Hospital to Leeds, was diagnosed with a serious heart defect.
He had a valve in his heart missing and during surgery, had to have it replaced with an artificial one.
“They don’t like doing that with babies, because it means they have to be on Warfarin,” his mum said.
“It thins the blood so it doesn’t clot around the artificial valve.
“But if it thins it too much, it can bleed out.”
So it’s absolutely crucial that the levels of Warfarin in the blood are right for the patient, with them measured by a measurement called the IRN.
That means regular checks so that the medication can be changed accordingly.
For Sarah, that led to regular hospital visits with her then baby son so he could have frequent blood tests.
“Every time he needed his IRN checking, we had to go to Pontefract hospital, wait on the ward until a doctor was free to take a blood sample. It was very stressful for everybody.
It could mean we were at the hospital nearly every other day and it would be two or three hours out of your day.
“At that point I could never imagine going back to work or what would happen if he had to do that while at school.”
Luckily when David was nine months old, they were provided with an IRN home testing kit by Leeds-based charity Children’s Heart Surgery Fund (CHSF).
It simply involves a finger prick test, with the £300 machine using one drop of blood to measure the INR.
Sarah can then phone that figure through to the heart ward at Leeds, who will then adjust his Warfarin dose.
She says it has made all the difference to David, who in April underwent more surgery to have his artificial valve replaced.
That impact is why say they are so keen to provide the home test kits.
Each year the charity, based at Leeds General Infirmary, buys around 12 kits for young patients because they are not available on the NHS.
Sharon Cheng, from the charity, said: “They cut waiting times down. Families benefit – mum or dad doesn’t have to take time off work.
“The families are always very grateful.”
But she added that though the charity is able to fund these for those children treated in Leeds, others across the country may find it more difficult to obtain them.
A national campaign has been started to call for the kits to be provided by the health service.
The AntiCoagulation Self-Monitoring Alliance (ACSMA) is urging the Government to provide greater access to the self-monitoring technology.
They say that not only would it benefit patients, it would also save time and money for the NHS.
Alison Denham, whose son Lucas uses the testing machine, can testify to the benefits.
She said: “The IRN machine was a Godsend, to be honest.”
The youngster, now 10, was also fitted with an artificial valve as a baby and put onto Warfarin.
Testing his blood at hospital was lengthy and difficult, sometimes needing up to nine attempts.
But Alison, from Middleton, Leeds, said the home testing kit had been “fantastic” and it should be available to all children who would benefit.
“Especially children who are going further afield. We are lucky in Leeds.”
Get the lowdown
There are more than 1.2 million people in the UK on warfarin, but less than 2 per cent use self-monitoring
As well as making life easier for patients, there is evidence that the technology can cut the risk of death by nearly two-fifths and more than halve the risk of strokes
The AntiCoagulation Self-Monitoring Alliance includes charities and other organisations campaigning for the kits to be available on prescription.
Log on to www.acsma.org.uk for information.