autumn 2013 · 2014-09-05 · great cause page 6 down on the farm see our redeveloped farm inside...

the Autumn 2013

youngepilepsy.org.uk

page 3

Non-epileptic seizuresOur review into non-epileptic seizures

Calling all golfers…Play a great course for a great cause page 6

Down on the farmSee our redeveloped farm

page 5Insi

deFree training in schoolsLearn about our epilepsy training programme for schoolspage 11

Jolly Jumper DayHold a Jolly Jumper Day in your office, school, or college to raise money for Young Epilepsy

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Welcome...In our new look voice, Interim Chief Executive Lisa Farmer explains why this autumn has been a busy time.

Autumn is an exciting time at Young Epilepsy’s headquarters, where St Piers School and College are based. We provide specialist education services at the school and college for young people with epilepsy, autism and other conditions. The students have returned following the summer break and it is with delight that we welcome over 120 students in college, 70 in school and 10 in our Connect2 service.

There is even more reason to be excited this autumn. After months of hard work, our farm has been transformed after former student, Mabel White, left the charity a legacy in her will. A significant number of other donors also generously gave to enable us to have six log cabin classrooms where our students can develop their skills and work experience, four animal shelters, a hay store and a sensory wildlife area. Thanks go to Surrey County Council, Futures for Kids, Wates Enterprise Family Trust and all the other donors who gave so generously.

In a further development, I’m very proud to announce that we’ve published a free guide for young people with epilepsy starting university. Our guide, which was very kindly funded by the James Lewis Foundation, explains how


to broach the subject with friends and housemates, avoid potential seizure triggers such as stress, lack of sleep and access other forms of support.

We haven’t stopped there. We’ve also produced an online guide for university and college staff so they can improve their knowledge of the condition and provide better help for students. You can read about both guides on page 8.

In other news, we’re expanding our Epilepsy Education for Schools programme. Thanks to a generous donation from the Freemasons’ Grand Charity, we’ve created an Education Officer’s post in Merseyside giving us much greater scope to visit schools in the North West of England. More on page 11.

We also outline how you can support Young Epilepsy during Christmas on page 7. You’ll find details of our Jolly Jumper campaign, our Christmas Concert, the Christmas cards we’re selling and our Santa Run.

Thank you for your ongoing support and I hope you enjoy this edition of the voice.

Lisa Farmer Interim Chief Executive

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Contents3 Non-epileptic seizures

4 Open days / New prospectus

5 Down on the farm

6 Avoiding prolonged seizures / Golf Day

7 Get involved this Christmas!

8 Supporting young people with epilepsy at university

9 Joe’s story

10 Reaching out to families affected by epilepsy / Contact our helpline

11 Raising awareness / Epilepsy training for schools

Smartphone users can scanQR codes accompanyingselected stories for moreinformation.

3youngepilepsy.org.uk 3youngepilepsy.org.uk

You may have seen in the news that TV presenter and singer, Kelly Osborne, and the R&B singer, Chris Brown, have both experienced non-epileptic seizures (NES) recently. Young Epilepsy researchers have just conducted a review of research into non-epileptic seizures. The review’s lead author Dr Colin Reilly explains more about NES and emphasises the need for further research into this area.

In laymen’s terms, non-epileptic seizures mimic epileptic seizures, but are not caused by electrical activity in the brain. They may also be referred to as psychogenic non-epileptic seizures (PNES) or non-epileptic attack disorder (NEAD).

NES are often thought to be associated with underlying psychological distress. The symptoms are not ‘faked’. They are real neurological symptoms that cannot always be explained by a medical condition. The cause is frequently difficult to identify but common factors seem to be school-related difficulties and interpersonal issues.

Concerns about misdiagnosis and the lack of treatment guidelines led Young Epilepsy to conduct a comprehensive review into NES in children.

The review, published in the Epilepsia Journal, concludes that accurately identifying and diagnosing NES is a challenge for both psychiatrists and neurologists. However, the consequences of misdiagnosis are significant.

Children with NES can be wrongly treated with antiepileptic medication. They can also miss out on valuable psychological therapy, believed to be an effective treatment for NES.

Children with NES are at greater risk of depression and anxiety. Therefore, the review places an emphasis on the importance of sensitively and effectively communicating a child’s needs amongst their family and school. However, there are currently no definitive guidelines on the best approach to diagnosis and subsequent management.

Young Epilepsy believes this review backs up concerns we have held for some time. We hope it will motivate collaboration and research amongst neurology and psychiatry/psychology professionals.

By campaigning to raise awareness and develop guidelines, we aim to secure better outcomes for children and young people with this complex condition.

A word from the experts

You can help fund our vital research work. Donate now and help create better futures for young lives with epilepsy: youngepilepsy.org.uk/donate

Non-epileptic seizures:


Want to find out more about our award-winning school? The new 2013 prospectus includes information about our unique educational services for children aged five to 19 years of age.

With dedicated, highly skilled staff and a warm, caring atmosphere, St Piers School

is a fantastic place for children with neurological conditions and behavioural difficulties to learn new skills, grow in confidence and make new friends.

Download your copy from our website: school.stpiers.org.uk/school-prospectus

An updated college prospectus will be coming soon and don’t forget our open days too. Come along and see St Piers in action.

St Piers School and College open days

OPeN DAyS

New St Piers School 2013 prospectus

Come and join us!

With over 100 years experience, Young Epilepsy is a leading provider of specialist health and education services for children and young people with complex needs, such as epilepsy, autism and other neurological conditions.

St Piers School and College are based at our headquarters in Lingfield, Surrey. We offer residential, full-time and part-time places for students from five to 25 years of age.

Our students benefit from access to world-class medical facilities,

Young Epilepsy’s school and college are getting ready to welcome prospective students and their families for a series of open days.

expert tuition and supporting therapies, all set in 60 acres of stunning countryside.

Come and see for yourself how students flourish and learn new skills.

Our open days will be held between 10am – 2pm on the following days:

Wednesday, 13 November 2013

Wednesday, 15 January 2014

Wednesday, 19 March 2014

Wednesday, 21 May 2014

Wednesday, 9 July 2014

To book your place, please email [email protected]

5youngepilepsy.org.uk

Mabel White was a student at Young Epilepsy from 1940 to 1943 and felt her life and health were transformed by her time here. Mabel gave other children with epilepsy a brighter future by leaving us a generous gift in her will.

St Piers Farm, situated at Young Epilepsy’s headquarters, is a

unique and highly regarded learning facility within our school and college.

Mabel’s incredible legacy has enabled us to build indoor and outdoor classrooms, a wildlife sensory walk and four new field shelters. These developments will help us to provide a full range of sensory, practical and observational land-based learning experiences in a safe, accessible environment.

By studying and caring for a range of livestock and small animals in a professional and supervised farm environment, students learn valuable vocational and life skills. More importantly, they gain confidence and a sense of achievement through making a positive contribution.

Our vision is to establish St Piers Farm as a centre of excellence for vocational learning, specialising in animal care and horticulture.

your legacy – be remembered for something amazing…Mabel’s inspiring story is just one example of how a legacy can create better lives for children and young people with epilepsy.

To find out more about leaving a gift to Young Epilepsy in your will, please visit our website: youngepilepsy.org.uk/legacy

Young Epilepsy’s amazing facilities include a farm that St Piers School and College students can use to gain experience looking after animals and growing plants. It’s been revamped thanks to funding from local donors and a legacy from a former student.

on the farm…Down

THe FARM


Here’s an unmissable date for your diary:

The Young Epilepsy Charity Golf Day Tuesday, 29 April 2014 Burhill Golf Club, Walton-on-Thames

It’s time to tee off for this ever-popular event at the stunning Burhill Golf Club in Walton-on-Thames, Surrey.

Don’t miss your chance to play the magnificent Old Course, boasting 18 holes of beautiful rolling parkland and listed amongst the top 100 golf courses in England.

This year’s golf day raised over £12,000 so please help us to make 2014 an even bigger success. The funds we raise will help us build our new school.

Tickets are available on our website, book soon as they will sell fast: youngepilepsy.org.uk/golf-day

Interested in our fantastic sponsorship opportunities? We’d love to hear from you.

For all enquiries, contact Kylie Prankerd on 01342 831245. Email: [email protected]

Young Epilepsy is working with Viropharma to launch a new educational campaign aimed at supporting parents and carers of children with epilepsy.

The campaign will raise awareness of good practice in implementing rescue management of prolonged, acute, convulsive seizures in children, with the aim of reducing the risk of progression to status epilepticus and its associated risks.

We want to make parents, carers and education providers aware of the five steps they should take when a child or young person has a prolonged seizure:

1. Note the time when the seizure started.

2. Clear the area to allow the child to move freely and safely.

3. Administer rescue medication if the seizure lasts for 5 minutes or more (usually after 5 minutes in convulsive seizures).

New emergency medication campaign

Calling all golfers…save the date!Want to play a great course for a great cause?

4. Reassure and monitor the child.

5. Call an ambulance if the seizure continues for 5 minutes after giving rescue medication.

Young Epilepsy Interim Chief Executive Lisa Farmer said: “It’s vital anyone working with children with epilepsy be familiar with emergency rescue medication. We hope that by promoting these five simple steps for parents and carers of young people with epilepsy to follow, they will feel more confident in providing rescue medication when required, and help prevent possible serious health consequences from a prolonged seizure.”

For more information go to youngepilepsy.org.uk/emergency-medication


As we say goodbye to a stunner of a summer, our thoughts are turning to the festive season. Here’s what’s coming up…

When: Sunday, 8 December 2013 Where: Victoria Park, London

We need you to get those bells jingling for Young Epilepsy!

Thousands of Santas will be raising money for charity at this festive fun event in London’s beautiful Victoria Park. Choose to run, jog or walk 5km or 10km.

Registration is open and costs just £22, which includes your free Santa suit. All we ask is that you raise a minimum of £100 for Young Epilepsy.

How to register: Email: [email protected]

Buy your Christmas cards from Young Epilepsy. Our lovely range of high quality Christmas cards will suit every taste and includes some very special designs by students from Young Epilepsy’s St Piers School and College.

Order online: youngepliepsy.org.uk/christmas-cards

Stocks are expected to sell out quickly so get yours today!

Save the date to make sure you can experience an evening of wonderful festive music at the magnificent St John’s Smith Square, London.

When: Thursday, 12 December 2013

With performances from world-class opera stars including Dame Felicity Lott, Jean Rigby, Brindley Sherratt and Maria Friedman it will no doubt sell out quickly so get in touch fast.

For further information please go to: youngepilepsy.org.uk/christmas-concert

When: Any day in December Where: You decide!

Hold a Jolly Jumper Day in your office, school, or college to raise money for Young Epilepsy.

It’s easy, get together with your friends, colleagues and family and pay a few pounds to wear your best (or worst!) festive jumpers for a day. We reckon there’s a jolly jumper lurking in everyone’s wardrobe. Whether it’s reindeers or snowflakes… the brighter the better!

So be loud, be proud and most of all – be jolly! Our free Jolly Jumper Day fundraising pack will help you get started, so order yours today:

To download an information pack go to: youngepilepsy.org.uk/jolly-jumper

The Santa Run

Christmas Concert at St John’s Smith Square

Jolly Jumper Day

Christmas cards on sale now!

For more news and to see whats going on please visit youngepilepsy.org.uk

Santa is dusting off his sleigh!


“At tim

es, I was very tired in tutorials. I struggled to make notes or get involved in discussions

Help for all in higher education

“

I left and was in my worst state of epilepsy to date

At times, I was very tired in tutorials.

Leaving home for college or university is an exciting rite of passage for many young people, but it can have added complications for someone with epilepsy.

Young Epilepsy recently undertook a project, generously supported by the James Lewis Foundation, to record the various experiences of students with epilepsy in higher education.

The results reveal common issues that can impact students with epilepsy, both academically and socially. Most are caused by lack of awareness and are avoidable.

The findings have led Young Epilepsy to publish information and resources for universities, colleges and students living with the condition.

By providing free, specialist information and easy-to-use tools, we can support both higher education staff and students. This project will improve the outcomes for many young people in higher education.

The resources fall into two categories:

For universities and colleges Information and online tools to help universities assess and support the educational, emotional and practical needs of students with epilepsy. The resources also include student case studies and videos to highlight best practices.

For students Guidance about common issues and concerns faced by students with epilepsy, such as:•managingtreatment•tellingfriends/housemates•emergencyprocedures•latenights,alcoholanddrugs•stressandstudypressure•understandingandaccessingsupport.

My seizures are brought on through stress and tiredness so revising late in the library made me worry that I would have a seizure. The university suggested I have a laptop and printer in my room. They also gave me a dictaphone to record lectures because I used to worry that I wasn’t getting everything down. Everything they did was about reducing stress.

To download the free resources go to: youngepilepsy.org.uk/higher-education-resources

HigHeR eDuCATiON

Student

““ 9

Joe’s story is just one example of how epilepsy can affect young people in higher education.

“This helped me achieve a 2:1 degree in Popular Musicology. After working hard throughout the course I was very happy with my grade.”

At times, I was very tired in tutorials. I struggled to make notes or get involved in discussions

Memory loss and fatigue made it diff cult to get to know people


Joe’s story“

” ”

”

”youngepilepsy.org.uk


At times, I was very tired in tutorials. It also illustrates that, with the right

support, individuals with epilepsy can achieve both academically and socially.

Although Joe had lived with epilepsy since childhood, it started to affect him much more during his first year of sixth form college.

“I was prescribed a variety of antiepileptic drugs (AEDs) and had to deal with a number of side effects, which no doubt changed my experience through further and higher education.

“At times, I was very tired in tutorials. I struggled to make notes or get involved in discussions, for which my memory was very much to blame.”

After disappointing AS level results, it became clear the side effects of the AEDs had affected Joe’s abilities in education. Joe decided a more practical subject would be easier to handle, so opted for BTEC Music Technology. It also gave him the opportunity to live away from home for the first time.

“I had always been socially confident and very much enjoyed life with my friends. However, by the time I reached college, the side effects of the AEDs were affecting my ability to socialise.

“Memory loss and fatigue made it difficult to get to know people. This led to depression and stress, which meant many more frequent seizures. After about three months, I left and was in my worst state of epilepsy to date.”

It took some time, but Joe eventually recovered enough to get back to university, this time close to his home and friends.

“I decided to live in student accommodation in an attempt to socialise with new friends. I met a few people, but it still wasn’t easy. I relied very much on the company of my friends from home too.”

Whilst at university, Joe applied for a disabled students allowance, which provided him with useful equipment, such as a dictaphone to record lectures. The university also allowed extra time for Joe to complete coursework.

Tell us about your experiences of education. Email your story to: [email protected]


When a child or a young person is diagnosed with epilepsy, it can be a frightening time for both patient and family.

Young Epilepsy is committed to helping anyone affected by epilepsy to find the right support. That’s why we recently sent information packs to over 200 clinics around the country.

Each pack contained information about the support available, including samples of publications specifically written for parents, children and young people affected by epilepsy.

Call the Young Epilepsy Helpline.

Our fully trained, friendly helpline staff are here to answer your questions, or simply just listen. Don’t worry, it’s all completely confidential.

Young Epilepsy Helpline Monday-Friday from 9am to 1pm. Phone: 01342 831342

Prefer to email? [email protected]

Or text us: 07860 023789 and we’ll get back to you within 1 working day.

Reaching out to families affected by epilepsy

Concerned or confused about epilepsy?

Day by Day by Me – Seizure Diary for Children

All About Me – Seizure Diary and Handbook for Teenagers

Childhood Epilepsy – A Parent’s Handbook

Emergency Medication Training Pack - Buccal Midazolam

Want to order one of our publications? Everything is available through our website at youngepilepsy.org.uk/order

All our publications are free; we only ask for a contribution towards postage and packing.

Free publications available include:


EE4S was originally piloted in London and the South East to raise awareness in schools about childhood epilepsy. The programme involves specially trained education officers delivering a range of activities within schools, including assemblies, lessons and staff training sessions.

The programme is free to schools and therefore relies on charitable funding. We are immensely grateful for some generous donations and are delighted to announce that:

•Educationandtrainingofficersarecurrently visiting over 30 schools in the West Midlands.

•TheFreemasons’GrandCharityhas donated an incredible £50k. This has enabled us to recruit an education officer to start delivering EE4S in the Merseyside region later this year and for this we are very thankful.

•Arecentdonationmeanswewill soon offer EE4S training to a number of schools in Nottingham.

Over 600 schools have benefited from the EE4S programme so far. We believe that by encouraging openness, empathy and understanding towards epilepsy within schools, this programme will help young people with epilepsy to achieve more, both academically and socially.

Raising awarenessWe are expanding our highly successful Epilepsy Education for Schools Programme (EE4S) so more school children can learn about the condition.

As the Deputy Head of a large secondary school, with over 20 years in teaching I have often come across students with epilepsy. I thought I was reasonably well informed when in fact there was so much I didn’t know. This programme can support schools to improve understanding in a very practical and sustainable way and I would be happy to recommend any school to take part.Deputy Headteacher

“

”To find out about free EE4S training for your school, please call: 01342 832243 ext 296. Or email [email protected]

Help us plan for the future!

giViNg DeTAiLS

STANDiNg ORDeR MANDATe

Regular donations allow us to plan ahead and commit to long-term projects; confident we can grow and develop our vital education, health and research services. By becoming one of our regular givers you’ll help us to provide better services and change the lives of more children and young people with epilepsy across the UK. Please return this form to: Ted Gibson, Fundraising Department, Young Epilepsy, St Piers Lane, Lingfield, Surrey, RH7 6PW.

Title .................First Name ......................................................... Surname ...............................................................

Address .........................................................................................................................................................................

....................................................................................................... Postcode .............................................................

Email .......................................................................................... Phone ....................................................................

I would like to give £5 £10 £25 £ ....................per month/year .................... to Young Epilepsy.

Please choose one of the following options for regular giving:

I will set up a monthly direct debt payment via my bank’s website to:

Account Name NCYPE trading as Young Epilepsy Sort Code 30-92-92 Account No 00160788

I have filled in the standing order mandate form below.

To (name of your bank) ...................................................................... Sort code ........../........../..........

Address: .......................................................................................................................................................................

Please pay Lloyds TSB Bank plc, London Road, East Grinstead RH19 1AH (30-92-92) for the credit

of NCYPE trading as Young Epilepsy account number 00160788 the sum of:

£ ........................ (in words ...................................................................................................................................... )

every month/year commencing ......../......../ 20......until further notice, and debit my account accordingly.

Name of account to be debited: ...........................................................................................................................

Account number..............................................................................

Signature ......................................................................................... Date ...............................................................

Better futures for young lives with epilepsyYoung EpilepsySt. Piers Lane, Lingfield, Surrey RH7 6PWT 01342 832243 F 01342 834639E [email protected]

Our thanks go to ACH for its generous sponsorship of this

issue of the voice.

Young Epilepsy is the operating name of The National Centre for Young People with Epilepsy.Registered Charity No: 311877 (England and Wales) © Young Epilepsy 2013

Publication No: 300

autumn 2013 · 2014-09-05 · great cause page 6 down on the farm see our redeveloped farm inside...

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