Samuel Jones is seven years old. Like many other seven year olds, his favourite things are his pet dog, cuddles from his parents and school. He especially likes music therapy.
Sam was born with severe physical and learning disabilities and has hundreds of epileptic seizures every day, of all kinds. They’re most severe and serious at night, but someone has to monitor and care for him 24/7.
Sam is one of many people with learning disabilities who also has epilepsy.
When someone has epilepsy and learning disabilities, their seizures are likely to be more frequent and severe. They have a greater chance of status epilepticus – where seizures last longer than 30 minutes. For Sam, that’s a constant risk, needing emergency medication and hospital treatment.
In one bad week, Sam went into status epilepticus four times, ending up in critical care. His parents, Tracy and Steve had great care from the hospital. But each time they returned home feeling very helpless and alone. They did not have the support of a specialist nurse.
The Joneses are coping with Samuel’s very severe epilepsy without the support of a specialist nurse. They are not the only ones – the shortage of specialist nurses is simply shocking. There are only around 350 in the UK when around 1,100 nurses are needed to provide the right service.
But it’s not hard to understand the tremendous difference a specialist nurse could make to a family living with this most severe type of epilepsy. They can provide support and advice to make sure families can cope.
As Tracy says: “When Sam’s seizures change, or he develops a new type of seizure it terrifies us. We see Sam’s epilepsy consultant a couple of times a year, but there are long months in between when we are alone.”
“We’ve been without a specialist nurse for so long that we’ve just got used to finding things out for ourselves. But you wonder if maybe a specialist nurse could spot patterns or things we have missed, or push for more tests, or ultimately help diagnose a reason or cure for his epilepsy.”
The greatest gift for Sam and his family would be to have the advice of an epilepsy specialist nurse and some peace of mind. With your help, now could be the time to make that a reality for thousands of families just like Sam’s.
Your donation can give the greatest gift - the gift of care.
A donation of £30 can help place brand new specialist nurses and support all doctors and nurses to give the best diagnosis, treatment and care.
A monthly donation of £5 can help protect nurse posts and bring the care of brand new specialist nurses to more people in 2013 and beyond.