Helping Little Hearts

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Helping Little Hearts
Dominic Irvine with heart patient Riley Platts

Heart Research UK launches new exercise toolkit.

New research shows that young heart patients could be missing out on vital exercise because they are not always given clear guidance when leaving hospital.

We launched our Helping Little Hearts appeal to fund a “toolkit” that will give every young heart patient in the UK an exercise “prescription” showing how much activity their condition will allow them to do.

We commissioned research by the world-leading Children’s Health and Exercise Research Centre (CHERC) at the University of Exeter – led by Centre Director, Professor Craig Williams - which showed that current exercise advice given to child heart patients across the country is patchy, with many families not receiving written information or specific advice, despite the positive impact that physical activity could have on their child’s condition.

An exercise toolkit was developed and piloted among young heart patients at Bristol Royal Hospital for Children, with further trials in Leeds, Southampton and Oxford.  We are now at the stage where we are funding and delivering the children's exercise toolkit to all of the children's specialist heart centres across the UK.

In the UK around one in 180 babies is born with congenital heart disease, while in children under five 3.5% of all deaths in boys and 4.8% of deaths in girls are from the disease.  The number of congenital heart disease operations increased by 60% between 2000 and 2010.

Barbara Harpham, National Director of Heart Research UK, said adult heart patients currently get advice on exercise given to them when they leave hospital, while children often don’t.  “These special youngsters should know that it’s good to run around, be in a team - just be active – not sit on the side lines watching.  The unique thing about this whole new approach is that the personal exercise prescription is signed by a medical profession.  It gives parents, teachers and anyone caring for children with heart problems the confidence to help them exercise to live healthier, happier and longer lives.”

Dr Graham Stuart, Consultant Cardiologist at the Bristol Royal Hospital for Children, who is leading the pilot study, said a lack of exercise in young heart patients can sometimes be harmful.  “Traditionally children with heart problems have not been encouraged to exercise because there has been very little guidance for them, their families and the medical profession on how they can safely and effectively be more active.

“This exercise toolkit, supported and sponsored by Heart Research UK, has been developed to enable such an exercise prescription to be made for each patient in a safe and effective manner so that everyone knows exactly what they can do.”

Paul Barnett and his two daughters Annie and Mollie from Bristol helped launch the Helping Little Hearts campaign.  Paul and his daughters have Marfan syndrome which weakens the body’s connective tissue and affects the heart valves and aorta.

Despite their condition the girls – aged 16 and 14 – have lived active lives which has helped them cope with their illness and strengthened their heart. 

Paul, 50, says there is a need for parents and their children to have clear guidance on how much exercise they can do.

He was active as a youngster with Marfan syndrome but, because there was no clear guidance, he wasn’t told he should avoid contact sports like rugby. “I think I am reasonably on top of my two girls’ condition but it could be that some parents – because of their child’s heart condition – are going to wrap them in cotton wool when the heart is actually a muscle and needs exercising.”

England netball player Clare Elsley also helped with the launch of the campaign.  Schoolteacher Clare, 37, has a dual chamber heart pacemaker and sees herself as a good role model to show that the presence of a heart defect doesn’t mean you can’t exercise. She was playing Super League netball when she started to feel unwell and later collapsed and was diagnosed with a heart rhythm problem.

She says the Helping Little Hearts exercise “toolkit” will be a real help to parents of children who’ve had heart treatments.  “Having this kind of personal exercise prescription for all young heart patients will also help those who perhaps shouldn’t be over-exerting themselves, but at the end of the day they will have to be guided by their cardiologist."