Biscovey Primary wins epilepsy care award for Grace, 5

Five-year-old Grace had her first seizure five months before she was due to start school. Her mum Lyndsey Lloyd remembers bracing for what that timing might mean, a delayed start, part-time days, weeks of her daughter’s first term missed while staff caught up on training. None of that happened, and the school responsible has just picked up a national award for it.

📷Lyndsey, Gareth, Harry, Ozzy the dog and Grace.

A diagnosis before the school gates

Lyndsey, from Par, says Grace’s seizures began in March last year and became more frequent, leading to an epilepsy diagnosis. The family has since found a way to explain it that makes sense to a five-year-old.

“It’s been a long journey coming to terms with her diagnosis. We’ve told Grace that everyone has electricity in their brain and sometimes she gets a bit much which makes a seizure happen,” Lyndsey said.

Grace’s seizures have generally been well controlled with medication, though she had a breakthrough seizure at school, and the family now carries emergency medication with them everywhere they go.

“As a parent, you are just on high alert a lot more than other parents,” Lyndsey said. “If we’re in a secure soft play area for example, it used to feel ok to not see the kids run past for five minutes, now you think of how much can happen in that time. If she was having a seizure, how long would it take me to find her?”

📷CREATOR: gd-jpeg v1.0 (using IJG JPEG v62), quality = 90?

A proactive start from day one

Because of the timing of the diagnosis, Lyndsey had worried Grace might face a different start to school life than her friends, perhaps held back until staff training was finished, or made to start part time and miss the first few weeks.

Instead, Biscovey Primary Academy began preparing before term started.

“The school has been absolutely brilliant from the get-go. They have ensured Grace has had a brilliant first year full of learning and fun,” Lyndsey said. “The staff took a proactive and holistic approach from day one, holding staff training sessions with Grace’s epilepsy nurse and I was involved in all aspects of safety planning as well as sharing our family’s first-hand experience of how to recognise Grace’s seizures.”

📷CREATOR: gd-jpeg v1.0 (using IJG JPEG v62), quality = 90?

Climbing frames, trips and a starring role

Thanks to her class teacher, Grace has taken part in everything the same as her friends, according to Lyndsey: climbing frames in the playground, school trips, sports day, and a big speaking role in the Christmas play, with extra care taken to keep her cool on hot days.

“They have also kept me informed if Grace seems ‘not herself’ and have been flexible with me in taking her home for an hour or so for a rest and then bring her back to school if needed,” Lyndsey said.

📷CREATOR: gd-jpeg v1.0 (using IJG JPEG v62), quality = 90?

An Epilepsy Star for Biscovey

Biscovey Primary Academy has now been awarded an Epilepsy Star from national charity Epilepsy Action, following Lyndsey’s nomination.

Chief executive Rebekah Smith said the charity was delighted to recognise the support the school had given Grace, particularly in her first year.

“Epilepsy can have such a profound impact on the whole family, and so it was particularly great to hear they have kept them fully involved and informed in all aspects of her education and safety,” Rebekah said.

“We hope that other schools are inspired by Biscovey Primary Academy to see just what can be achieved by taking such a proactive, collaborative and holistic approach to a child’s education. By equipping staff with training, knowledge and compassion, we can collectively ensure children like Grace are not defined by their condition but given a supportive environment which allows them to shine and live to their fullest potential.”

📷CREATOR: gd-jpeg v1.0 (using IJG JPEG v62), quality = 90?

“It has been wonderful seeing Grace’s progress”

Accepting the award, Head of School Miss Bullock said staff wanted every child, whatever barriers they face, to have a positive start.

“We understand the impact that living with epilepsy can have on young people and their families. Therefore, when learning of Grace’s diagnosis, we wanted to ensure that all staff were trained and prepared to support her from the very start,” Miss Bullock said.

“It has been wonderful seeing Grace’s progress this year and watching her thrive both academically and socially, enjoying all that school life has to offer. It is our mission to make sure that all children, regardless of any barriers they face, have a positive start to their education and receive ongoing support to allow them to thrive throughout their primary school journey. We look forward to continuing to support Grace.”

A family that feels less alone

Grace has since finished her first year at Biscovey, moving up from Reception. Looking back, Lyndsey said the year had given her family as much peace of mind as they could have hoped for.

“As a family we have been allowed the most peace of mind possible in navigating Grace’s first year of epilepsy alongside her first year at school,” Lyndsey said. “She has recently ‘graduated’ from Reception year and has had a brilliant first year full of learning and fun. This award is a way of recognising the school’s exemplary care of the situation and say thank you to all the staff.”

Grace and her family are still near the start of her journey with epilepsy. Lyndsey said the Epilepsy Action website had helped answer her early worries, and its cartoons explaining seizures had become something Grace turns to herself.

“During the diagnosis stage, I found the Epilepsy Action website full of things to answer my worries at the time. Some things that were new to us seemed ‘normal’ for epilepsy and so we felt less alone,” Lyndsey said. “Now I found there are great resources for Grace, such as the cartoons which explain seizures to her. I can see already there will be resources we will come back to as she gets older and asks more questions about epilepsy.”

Epilepsy affects around one in every 100 people in the UK, and more than 52,000 people are living with the condition in the south west. Nationally, Epilepsy Action estimates around 63,000 parents share Lyndsey’s particular worry each time a child with the condition heads back through the school gates. There is more information on back to school with epilepsy on the charity’s website, along with a freephone helpline on 0808 800 5050.