More than 40 children have been diagnosed with epilepsy – thanks to a dedicated service at a hospital trust.
Kirsten McHale, clinical nurse specialist for epilepsy and neurodisability at Sussex and Surrey Healthcare NHS Trust, now runs a clinic every week at the hospital with a case load of more than 100 children.
Kirsten said: “My role is new and I have been in post about 12 months, prior to that there was no dedicated epilepsy service available for children. Now we see children in clinic every week.
“So far we have had 41 new confirmed diagnosis of epilepsy and ten still awaiting EEG (electroencephalogram) tests.”
Kirsten and consultant Dr Karen Ansell work with families to try to diagnose children’s conditions and improve their quality of life by giving safety advice and managing medication.
“We see the children in clinics and the family will tell us their history,” said Kirsten.
“We go through a very good history. We often ask parents to video any fits, faints or funny turns.
“Sometimes it is very clear. So then we send them through to an EEG test.
“When we get the results of the EEG from there on in we talk through the diagnosis.
“We realise it can be quite a shock so I go and do home visits.
“I have a mobile number now as it can be a lot for people to take on board so they can phone me if they need more advice.”
Kirsten also visits schools in the area to help them understand how to react if a child has a seizure.
“We make sure staff are fully trained to deal with children having seizures.
“If someone is having a seizure you let it run its course,” she added.
“You need to time it, make sure the person is comfortable and as it starts to slow down start to reassure them.
“However if you’re concerns just call and ambulance – even if paramedics get there and the seizure stops.”
Despite the support, Kirsten said there is still stigma surrounding epilepsy.
“Children can sometimes be unhappy talking about it because they feel very isolated,” she said.
“People only see the bad things. A child with epilepsy should lead a perfectly normal life just with a few lifestyle tweaks – such as always making sure a lifeguard knows you have seizures.”
To help children come to terms with their diagnosis, the team organised an activity afternoon at Holmbush Farm near Horsham.
Kirsten said the session helped children between 10 and 16 years old, make new friendships, while parents share experiences with each other as there are no support groups in the area.
“It is all about support and raising awareness,” said Kirsten.
“It got kids talking and they didn’t look around and think ‘I’m on my own’.
“There were two girls who didn’t know each other before and they found out they’re going to the same school.
“It has been really well received and really well supported.
“I love what I do and I’m very proud of the service.”
Young Epilepsy, who sponsored the activity afternoon, are the national charity who support children and young people aged 25 and under living with epilepsy and associated conditions across the UK. To find out more visit youngepilepsy.org.uk.
To find out more about epilepsy visit www.epilepsy.org.uk or contact Surrey & Sussex Healthcare NHS Trust on 01737 768511.
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