An Introduction to NCYPE – by Jon Sharpe
Contribution to UK Epilepsy Website. Guest article by Jon Sharpe, Principal St Piers School and Further Education College
The National Centre for Young People with Epilepsy (NCYPE – www.ncype.org.uk) has a simple aim; to create better futures for young people with epilepsy. Although a simple aim, it’s not always a simple task.
We are best known for our school and further education college, St Piers. As Principal of the school and college, I am mostly concerned with ensuring the young people in our care reach their full potential. This presents a number of challenges as our students often have complex epilepsy, which often comes hand-in-hand with other conditions such as autism.
Every one of our students has a story to tell. They’ve often been mis-diagnosed or attended mainstream schools and fallen behind because staff with little knowledge of epilepsy have not managed the student properly. In unfortunate cases, students have also been bullied by classmates at their former schools.
To help our students reach their potential, they receive a tailored programme of stimulating learning and are supported throughout. I am lucky to work with a talented and dedicated team of teachers and support workers. You would be amazed at how creative they can be – I challenge anyone to visit our school’s Creative Arts department and not be impressed by the Egyptian-style Pyramid and Pharoah’s tomb that have been built there! Our college students, meanwhile, produce stunning artwork that is regularly put on public display.
Not all the learning takes place in the classroom. The majority of our students stay with us on a residential, basis either 39 or 52 weeks a year. Residential students live together in shared houses and learn a variety of social skills, again supported by dedicated, creative and talented staff.
Although challenging, the work we do is incredibly rewarding. It is amazing to watch a new student come to us at St Piers, learn to socilaise, makes friends and achieve things they’ve never done before. For some of our students it is an achievement to get up and get dressed in the morning. For others it is an achievement to successfully complete a work placement with a local company. No matter how small the achievement, we celebrate it.
If your child has complex epilepsy and you would like to learn more about our work then I would encourage you to visit our website: www.ncype.org.uk and come to one of our open days, the next of which takes place on May 11.
FURTHER INFO ABOUT NCYPE
There are many aspects to the NCYPE’s work aside from our school and college. We increasingly lobby politicians and campaign to raise awareness of epilepsy and health issues and we undertake most of this work as part of the Joint Epilepsy Council.
We also run an information service and helpline for anyone requiring further information about epilepsy. This service also provides expert training for professionals and families that need detailed information about the condition. Via this service we produce and publish two handbooks for parents of children with epilepsy. One is for parents whose children have just been diagnosed with the condition while the other is for parents of children with complex epilepsy. Seizure diaries are also available for children and teenagers so they can keep a record of when seizures take place and help them take control of their condition.
In addition to this we have the world-class Neville Childhood Epilepsy Centre which, like the rest of our operations, is based in Lingfield, Surrey. This centre provides medical assessment, diagnosis, therapeutic and rehabilitation services. Crucially, the centre also undertakes research into the condition.
If you know a child or young person with epilepsy, please visit our website and if you need more detailed information, please do not hesitate to get in touch.
NCYPE Helpline (9am – 1pm). Help for young people, parents and families as well as professionals in health, education or care work who work with them. Tel: 01342 831 342 / email firstname.lastname@example.org
For copies of our handbooks or seizure diaries, please call our main switchboard – 01342 831 342 and ask for extension 508
Also find us on Facebook and Twitter: @Youngepilepsy
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