New survey reveals children and young adults with incurable heart conditions blocked from essential disability benefits

A survey, commissioned by the children’s heart charity Little Hearts Matter, reveals almost a third (30%) of children and young adults with a single ventricle heart were refused disability benefits on initial application. In addition, around 10% of applicants are never awarded the benefit.

When asked how this has affected parents and young adults the survey revealed overwhelming levels of anxiety and stress to fight for the disability benefits they need and many claim through a highly stressful tribunal appeal process.

Single ventricle heart conditions (half a working heart) are the most serious, incurable hearts conditions that exist. They are devastating and life-changing for children, young adults and their parents.

Today, thanks to medical advancements over years, many people are now living into adulthood and eager to work and live their life to the full but their condition is routinely misunderstood leading to them being denied the disability benefits they desperately need.

Dillon Morley, 20yrs, from Cheltenham, lives with half a functioning heart.  He is currently on an apprenticeship in aerospace engineering.

Dillon says: “Living with half a functioning heart is challenging but I’m determined to live my life to the full.  Applying for disability benefits continues to be hugely stressful.  I’ve had to re-apply and appeal so many times and go to court.  I’ve even had my car taken away which was devastating – I find it hard to walk short distances. It’s made me feel angry and worried about my future.  Without these benefits I struggle to see how I’ll be able to access work in the future.” 

Suzie Hutchinson MBE, Head of Services, Little Hearts Matter says:
“Single ventricle heart conditions are devastating and incurable. DLA and PIP are enabling benefits that allow a new generation of young people to gain from their education and gain supportive care and mobility support.  Other serious conditions including; Cystic Fibrosis and Epilepsy are automatically recognised for these benefits.  Little Hearts Matter is urgently calling for every child born with a single ventricle to have automatic acceptance for DLA or PIP so they can life their life to the full. ”

Dr Paul Clift, Consultant Cardiologist, Queen Elizabeth Hospital, Birmingham who has seen young people transition into adult heart services, said: “Over many  years, I’ve seen the huge impact Little Hearts Matter has had on children, young people and families affected by single ventricle heart conditions. These young people are trailblazers and show the impact of medical advances. We now need to ensure support systems are put in place so they can live life to their full potential.”

For further information: Emma Pelling, emma@pellingpr.co.uk, 07958 558172. www.lhm.org.uk

About Little Hearts Matter:
Little Hearts Matter is a national UK charity offering help to anyone affected by the diagnosis of single ventricle heart condition. From initial antenatal diagnosis, through treatments and into life at home, the charity works with children, young adults and families to reduce the isolation, fear and lack of understanding created when a child is diagnosed as having half a working heart.