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Champions for Childhood Epilepsy

Welcome to the NCYPE’s

Champions for Childhood Epilepsy

Campaign training and resources pack.

If you haven’t yet attended a NCYPE training day

Following the lectures on the enclosed DVD will help to improve your knowledge and understanding of epilepsy with a focus on schools and education. You will need to view all the chapters in conjunction with the other materials on the DVD.

If you have already attended a NCYPE training day

You can use the DVD to refresh your memory or to share learning with colleagues in your school.The materials in the pack will help you in developing best practice and policy in your school.

For next steps to making a difference as a School Epilepsy Champion refer to pages 4 - 5 of this pack.

For you, your school and your students to get full value from your training, you must complete steps 1-4 on page 4. There are supporting materials in this pack and you can contact our campaign team for further help at any time. Just email: campaign@ncype.org.uk

Achieving Better Futures for students with epilepsy at your school

Together we can make sure your school has excellent policies and practice in place to benefit all students – both now and in the future.

Thank you for signing up to our campaign. This pack will support you and your school in developing policy and practice to ensure that all your students with epilepsy both now and in the future are supported in the best way possible.

At the NCYPE we have over 100 years experience in epilepsy care and education.

As a national charity, we work to support all 60,000 young people with epilepsy across the UK. Research indicates that these young people too often get a raw deal from health and education services. Families and young people often tell us about the struggles they have to get the right support.

That is why we began our Champions for Childhood Epilepsy Campaign – to work with those providing health and education services to improve things. We know that schools and teachers want to do their best for all their students, but without appropriate training and support that is a real challenge.

This training pack for schools and teachers was developed from a very successful pilot project conducted with 21 schools. From this work we developed a practical, effective and affordable education model to help improve understanding and outcomes for pupils with epilepsy. The report on this work is included on your DVD.

By joining our Champions for Childhood Epilepsy Campaign you have taken the first step. Your school will be supported to develop model practice which can ensure that every child, including those with epilepsy, receives the support they need to achieve and succeed.

The National Centre for

Young People with Epilepsy

“I so enjoyed the training...

I thought I knew enough about

epilepsy but I was so very wrong.”

Tara Copard – Outreach Worker and Schools

Epilepsy Champion, Marden Lodge School

Four simple steps to… better futures for young lives

with epilepsy in your school

You have already taken the first and most important step by joining our Campaign.

Now you must nominate a member of your staff to train as your School Epilepsy Champion. This can be a teacher, SENCO or a member of support staff, whatever will work best for your school.

Your School Epilepsy Champion is now a resource for colleagues across your school. They can identify further training needs, advise on classroom strategies, keep in touch with the NCYPE and identify awareness raising

opportunities that work for your school.

Our Epilepsy Education 4 Schools team, our Helpline and our Champions for Childhood Epilepsy Campaign staff offer on-going help and support at any time and in all these areas.

Once trained, your School Epilepsy Champion can use the resources in the ‘School Epilepsy Champions’ folder on the DVD to help them review practice and policy at your school.

When the work is done, we can endorse your policy so that your work can be recognised when Ofsted visit.

Together we can ensure that both present and future students with epilepsy in your school benefit from this work.

You must now decide how your nominee will be trained. They can attend a study day or we can tailor a training day for a group of schools in your area. Or your nominated champion can follow the training in this pack.

However your School Epilepsy Champion trains, we will support you all the way.

There is detailed information about NCYPE training on your DVD, or you can visit our website.

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Getting all our schools together for this training was a great opportunity to build in good practice together – I know how much our schools benefitted. Sarah Davison – Manager, Tandridge Confederation

• On average there is one child with epilepsy in every primary school, and five with epilepsy in every secondary school.

• Epilepsy, and epilepsy medication, can seriously affect learning, concentration, memory and behaviour.

• Up to 50% of the 60,000 children with epilepsy in the UK may be significantly underachieving at school.

Our dedicated staff are always ready to support your school. There is a range of resources in this pack that will provide all the information you need. We are always here and happy to answer your questions or provide more resources and information.

Did you know...

• 5-15 year olds with epilepsy are four times more likely to have an emotional disorder, such as depression, than children with other long term medical conditions.

• A common assumption is that epilepsy causes violent seizures, but these are just one of over 40 forms a seizure can take. It is just as important to understand other more subtle forms such as ‘absences’ lasting just a few seconds.

Epilepsy Education 4 Schools

Our Epilepsy Education 4 Schools team can visit your school to provide teaching about epilepsy for pupils and staff. They can deliver lessons or training and help you raise awareness of this common, but frequently misunderstood, condition.

Funded by donors, this service is available free in some areas.

That’s why at the NCYPE we are so passionate about

the work we do.

A teacher noticed me ‘not paying attention’ in class and told my parents. If it wasn’t for her my epilepsy may have gone undiagnosed.

Kelly O’Haire Media and Communications Officer

This programme has been a brilliant opportunity for the Confederation – although it’s been a while since we worked on the pilot the improved knowledge, understanding and outcomes for our staff, families and young people have been fantastic.

Sarah DavisonManager, Tandridge Confederation

My daughter’s school were very supportive but didn’t

have the training, knowledge and organisation they

needed - so that one day they sent her swimming with

a supply teacher who had no idea about her epilepsy.

Caroline Muir Parent

As someone with epilepsy I really like it when people understand me and what I go through. When my school took part in the Champions for Childhood Epilepsy Campaign lots of my friends and teachers learnt about epilepsy and that made me feel happier and more understood.

Max Buckley Student age 13

The training was just right but it would be useful to have

something to bring back and show the rest of the staff as well

as any new staff, so I look forward to this DVD resource.

Daphne ShieldsHead Teacher, Audley School and School Epilepsy Champion”

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I’ve been a teacher for 22 years and thought I was well informed, but this training really made me re-think, particularly how we monitor progress for students with epilepsy.

Chris Keating Deputy Head, Imberhorne School and School Epilepsy Champion

Making adifference

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Handy notes

stored here!

Our thanks

We are grateful to everyone who contributed to the making of this training pack including many NCYPE staff. Particular thanks go to James Tarpey, Sarah Vaughan, Alfie Webster, Jesse Gassongo, Sahr Bongay, Adrian Gardener, Joseph Ackerman, Orla Blakelock, Kira-Marie Maher and Brahim–Farouk Sesay of the Brit School Croydon. The Muir Maxwell Trust and Meridian Television for the use of their video footage and animation. Matthews Friends, F.A.B.L.E. and Cyberonics for the images they provided. Dominic, Charlotte, Eleanor, Gareth, Lewis, Nathalie, Rebecca and Rohan from the NCYPE Outreach Team. All our School Epilepsy Champions and other Champions for Childhood Epilepsy including Sarah Davison, Alex Burch, Caroline Muir, Kim Deville, the children of Lindfield Primary and Isabelle McCann.

David FordDavid obtained a degree in Psychology from Hull in 1975 and trained in Social Work at Swansea in 1977. Following an 11 year career in Social Work he moved to the voluntary sector in 1988 working for Sense, Leonard Cheshire and Shelter before taking up the role of Chief Executive of The National Centre for Young People with Epilepsy in 2007.

Victoria BurchVictoria studied Human Sciences at Oxford before becoming a primary schoolteacher and moving into special education. She trained as a neuropsychologist at Columbia University, New York and joined the neuropsychology team at Great Ormond Street before joining the NCYPE in 1998 as Senior Psychologist. Victoria regularly lectures about the learning, social, emotional and behavioural difficulties that can accompany epilepsy, and has contributed to publications in this field.

Clare HarrissonClare is the NCYPE’s Clinical Nurse Specialist and has worked for the organisation for 25 years. Her wealth of knowledge and experience about childhood epilepsy were an essential element in developing the chapters presented by Simon Cox. Clare is one of our leading trainers delivering stimulating and informative study sessions to a variety of professionals around the UK.

Gill GallagherGill gained a degree in Biology at the University of London and then went on to train in teaching at the University of Birmingham. She taught science for 23 years before joining the NCYPE in 2007. She has led the development of our Childhood Epilepsy Information Service which now delivers a comprehensive range of expert information, training and education about childhood epilepsy for professionals, parents and young people.

Simon CoxSimon is an investigative reporter and presenter for BBC Radio 4. He is the chief reporter on Radio 4’s investigation strand “The Report” and presents the BBC’s technology series “Click On”. He also works as a consultant training journalists around the world. In a long and varied career with the BBC he has worked as a news correspondent for TV and radio and has reported from over 25 countries.

Helen CrossProfessor Helen Cross is The Prince of Wales’s Chair of Childhood Epilepsy and Honorary Consultant in Paediatric Neurology at UCL-Institute of Child Health, Great Ormond Street Hospital for Children NHS Trust, and The National Centre for Young People with Epilepsy. Qualifying from Birmingham University in 1984, Helen trained in paediatrics then paediatric neurology, obtaining her PhD in 1998. She has been actively involved with the International League Against Epilepsy (ILAE) and is Chair of the Trustees of Epilepsy Research UK. In 2007 she was awarded an Ambassador for Epilepsy Award by the ILAE.

Our speakers

and presenters

Your Champions for Childhood Epilepsy

Campaign training DVD

©NCYPE 2011

Chapter Headings1 Foreword by Sam Gyimah MP

2 Introduction

3 Epilepsy – basic facts

4 Seizures, medications and emergency protocols

5 Psychological impact, stigma and bullying

6 Epilepsy and learning, classroom strategies and monitoring

7. Next Steps – your role as School Epilepsy Champion

The ‘Training Support Guide for Schools’ provides more detailed information on all topics covered.

Further useful documents include:The Epilepsy Education 4 Schools programme, Useful web links, How to administer Buccal Midazolam and About the Ketogenic Diet

There are Pro-formas for:Medication Record, Emergency Medication Record, Seizure Recording & Description charts, Individual Health Plans and Contact Detail Sheets

And ordering information for:Seizure diaries (children and teens), Parents handbook, Complex epilepsy handbook.

Additional resources on the DVD…

Supporting documents include:

There are four folders of additional printable resources on your DVD. To access these materials, please put the DVD into your PC or mac.

DVD contents

The NCYPE and the Champions for Childhood Epilepsy Campaign are extremely grateful to all our funders who make this important work possible. As a charity we rely entirely on such generosity to continue towards our goal of better futures for young lives with epilepsy. For a full and up to date list of our funding supporters please visit: www.ncype.org.uk/campaign

If you or your school are planning a fundraising activity and would like to support the NCYPE, our fundraising team will be happy to work with you and can provide a range of resources to help make your fundraising event a success. Tel: 01342 831245 Email: fundraising@ncype.org.uk

Better futures for young lives with epilepsy

The NCYPE, St Piers Lane, Lingfield, Surrey, RH7 6PWTel: 01342 832243 Fax: 01342 834639 Email: info@ncype.org.uk Visit: www.ncype.org.uk Follow us on Facebook: The National Centre for young People with EpilepsyFollow us on Twitter: @youngepilepsy

Childhood Epilepsy Helpline 01342 831342Monday-Friday 9:00 am – 1:00 pmEmail: enquiry@ncype.org.uk

Registered charity No 311877 (England and Wales)Publication No. 150© NCYPE 2011