We do not yet know the circumstances of Ivan’s death but we do know that he had severe epilepsy, among other conditions.
Our thoughts are with the family and we hope that they will be given the space to grieve in private.
There are 58,000 children with epilepsy in the UK. Thankfully 70 per cent of these children have their seizures well controlled by medication. However, over 17,000 children have uncontrolled epilepsy and experience seizures that can affect their daily life. They may also have other disabilities and medical conditions.
Epilepsy Action recently launched a report, Epilepsy in England: Time for change, looking at epilepsy service provision in England. It found that services for children with epilepsy are often inadequate and under-funded, with a lack of specialists, poor access to diagnostic equipment and vital support for families.
Epilepsy Action believes that every family with a child with epilepsy should have access to the best quality care and treatment as provided for in guidelines, for example from the National Institute for Health and Clinical Excellence.
Epilepsy Action has a helpline for people affected by epilepsy, freephone 0808 800 5050.