Progress with the Education Pilot

The NCYPE Better Futures Campaign education pilot programme aims, through working collaboratively with a variety of schools, to develop a comprehensive support programme including a package of materials that can be used by schools right across the UK.

The campaign objective is to improve (in this case) education services for young people with epilepsy across the UK. By working closely with schools, we learn from each other. Their educational expertise combined with our expertise in childhood epilepsy means that together we can ensure all young people with epilepsy in mainstream education get the understanding service they need to achieve their best.

The education pilot work began in partnership with schools from the Tandridge Confederation in Surrey. It has extended naturally through ‘word of mouth’ to encompass a variety of other schools in the local area.

The NCYPE is keen to ensure that we work with a full range of schools on our education pilot programme including:

• Infant
• Junior
• Primary
• Secondary
• Special – residential
• Private
• Confederations of schools
• Rural
• Inner city
• Boarding
• Academy schools

To date, we have established working pilots with all but the final three, although we are following up on an interest expressed by an inner city based confederation.

The NCYPE’s Better Futures Campaign continues to seek opportunities to develop working partnerships with other ‘types’ of schools. Such additional collaborations will offer us the opportunity to further test our model and to ensure that we have a truly robust ‘fit all’ package to roll out to schools across the UK.

The early experience of participating schools

To date:

• 31 Epilepsy Champions have received the training.
• So far 21 schools (7,000 pupils) have signed up to our campaign.
• We have had interest from two further confederations.
• Several other schools in the area have also shown an interest in the project.
• The main teaching unions and professional associations are expressing their support for this work.

Comments from participating schools include:

“I so enjoyed the training it was unbelievable! I can’t stop talking about it. I thought I knew enough about Epilepsy but I was so very wrong.”

“This is all without doubt, knowledge that everyone working with children should have.”

“It is very important to be inclusive as every child does matter – so we need this knowledge and understanding”

“It was great to have examples of unusual behaviours which can be caused by epilepsy – everyone recognises overt seizures bit possibly not those where the person is more mildly affected.”

“I had no idea about the different types of seizure – particularly absence seizures. I do think a lot of us would not recognise that as epilepsy without this training and those children might then never get the help and support they so clearly need.”

“I had no idea about the memory losses that can be part of epilepsy, clearly we would have to take that into account in a child’s IEP.”

Comments from professional associations and trade unions include:

“This (managing medical conditions in mainstream schools) is the number one issue we face whenever we talk to our members.”

“Our members are often being asked to do things they are simply not trained to do and generally no one is really offering that training.”

“Support staff can face a kind of moral blackmail. They are told things like - ‘little Jimmy won’t be able to come on the trip unless you can give his medication’. But with no training or backup just how safe is that?”

“Teachers want to do the best by all their students but someone needs to recognise that without adequate training, schools very often feel they are simply not equipped to offer the necessary support.”