Ex-heart patients write guide for teens needing pacemakers

BY TOBY PORTER
toby@slpmedia.co.uk

Two former Evelina London Children’s Hospital patients have created a booklet to help young people who are living with a pacemaker.

Friends Hannah Phillips, 22, and Katie Miller, 20, were both born with congenital heart conditions and had pacemakers fitted at Evelina London.

After their experiences, they teamed up with the children’s hospital to produce the booklet, Wired Up.

Hannah, from Lewisham, was born with a heart condition called Ebstein’s anomaly, where a valve which directs blood through the right side of the heart does not work properly.

This meant she developed tachycardia, a fast heart beat, and arrhythmia, an irregular heart rhythm.

Hannah has had surgery eight times, and her pacemaker was fitted at Evelina London when she was 16.

Katie, from Putney, was born with a complete heart block, an abnormal heart rhythm caused by a delay to the electrical impulses that tell the heart to beat, as well as a condition where blood mistakenly flows between two of the major arteries connected to the heart, and a problem with a heart valve.

Katie first had a pacemaker implanted when she was four, which was replaced when she was 16. She had a new pacemaker fitted at Evelina London when she was 20.

Hannah and Katie wanted to provide easy to understand and relatable information for people aged between 13 and 25 who need a pacemaker and those with pacemakers moving from childrens to adults services.

Wired Up covers a range of useful information, such as what to expect from the procedure, what they should take to hospital, and how they may feel after they have their pacemaker fitted.

The booklet includes a glossary of terms and space at the back for patients to make notes about their appointment.

Hannah is studying early years education at Greenwich University.

She said: “Wired Up was developed from our shared personal experience of being teenage patients. At the time we wanted information about living with a pacemaker that we could relate to, so we decided to create a guide that would resonate with people our age.

“As former Evelina London patients it was really great to get the support of the hospital with the booklet. ”

Katie, a cardiac physiology student at Swansea University, said: “The aim is to help other young people living with similar heart conditions.

“Hopefully the booklet will provide relatable information for teenagers on a more personal level without boring medical jargon and a clinical feel.

“As well as answering questions young people may have, I hope it is a guide to help them on their journey.”

Wired Up was funded by Evelina London’s cardiology service and supported by the engagement team who work with young people and families to make sure that their opinions are used to inform improvements to care.

The cardiology service diagnoses and treats many children’s heart conditions and cares for around 6,000 patients a year.

Wired Up will be offered to cardiology patients at Evelina London. It is also available to download on Evelina London’s website at www.evelinalondon.nhs.uk/wiredup.