1youngepilepsy.org.uk

Champions Awards

National Epilepsy Week –discrimination uncovered

‘Fast Forward’ workshops

More ways than ever to get involved

Summer 2013 Issue 12

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youngepilepsy.org.uk Focus: National Epilepsy WeekTo mark National Epilepsy Week, we published the results of a survey* showing that young people face discrimination more akin to 1913 than 2013.

The survey questioned adults and children with epilepsy, plus members of the public, on their attitudes to the condition. It found that 79% of people with epilepsy across all ages are the victims of discrimination. There is particular concern for young people about their ability to cope with negative reactions. Negative reactions from others after a seizure included:

• being told they are sick (41%)

• being called mad or crazy (43%)

• being told that epilepsy is contagious (29%)

• being accused of being possessed (20%)

David Ford, Young epilepsy Chief executive said: “It is alarming that in modern society children with epilepsy continue to be ridiculed and discriminated against. These attitudes are outdated and it is time they stopped. We all have a duty to challenge ignorance and misconceptions about the condition.”

The survey results were discussed widely inthe media. They appeared in the Independentnewspaper, on BBC Radio 5 Live, Sky News and a host of other regional radio stations and local newspapers.

*The research for Young Epilepsy was carried out online by Opinion Matters between 29 April 2013 and 08 May 2013 amongst a panel resulting in 203 people with epilepsy and between 26 April 2013 and 7 May 2013 resulting in 2,042 adult respondents. All research conducted adheres to the MRS Codes of Conduct (2010) in the UK and ICC/ESOMAR World Research Guidelines. Opinion Matters is registered with the Information Commissioner’s Office and is fully compliant with the Data Protection Act (1998).

Discrimination:One family’s story

My son was diagnosed with epilepsy when he was 6 years old, from then on he was the odd one out. The school was so scared that he would have a seizure that I had to accompany him on school trips! He was bullied so badly at school, other students tried to hit him on the head to make him have a seizure. They would call him names and say he should be locked up. On one occasion I had to physically get inbetween him and other kids to stop them hitting him. The school tried to step in but it was my son who was excluded, not them – he had to sit with a teacher during breaks. Now 17 he is at college and things haven’t got much better.

Young Epilepsy believes this kind of discrimination is unacceptable. As the voice of childhood epilepsy, we want change and will continue to do all we can to raise awareness of the condition and help schools and other organisations tackle discrimination and prejudice.

Work in education? You can help. We provide epilepsy training and free resources for schools and colleges youngepilepsy.org.uk/training

We launched What Helps? What Hinders?, Young Epilepsy’s study exploring the extent to which children with epilepsy are excluded from school and what schools can do about it. You will find more on page six.

We also held our first ever Young Epilepsy Champions Awards. This inspiring event recognised the efforts of the many ordinary people and organisations that go the extra mile to improve the lives of those with epilepsy. You can read all about this star-studded event on page eight.

During National Epilepsy Week we published the results of a shocking survey showing people with epilepsy frequently experience discrimination. It proves there is much work to be done to tackle the prejudice faced by those living with the condition. You’ll find more on the following page.

Our fundraising team held a Gala Evening at Grange Park Opera and a number of runners were entered in the London and Brighton Marathons. Looking forward, the team is organising a Race Day at Lingfield Racecourse and I have no doubt it’ll be a major success. We are very grateful to the many people who go to great lengths to fundraise for us and support our work. You’ll find ideas of how you can get involved on pages nine and 10.

Finally, you may be aware that I will be leaving Young Epilepsy at the end of August. During the seven enjoyable years I have been here, the Neville Childhood Epilepsy Centre opened, the charity developed its services nationally, the voice newsletter was launched and plans are firmly in place for the building of a new education resource centre. I’m delighted to have played a role in all of these developments and I’d like to take this opportunity to thank you for your support. I will watch developments with interest as the charity helps those living with epilepsy.

I hope you enjoy this edition of the voice.

Welcome to the voice

Smartphone users can scan QR codes accompanying selected stories for more information.

Whenever you see this symbol you can find out more on our website: youngepilepsy.org.uk

Videos are available on our site wherever you see this symbol:

find us here:You can also

FINDOUT

MORE

Welcome to the Summer 2013 edition of the voice. We’ve had some great successes recently in raising awareness of epilepsy and also launched several new initiatives to help the 112,000 children and young people living with the condition.

Tell us about your experiencesGet in touch and tell us about your experiences of discrimination.

You can email us at communications@youngepilepsy.org.uk

You can also check out what other people have said about discrimination by visiting

our Facebook page: facebook.com/YoungEpilepsy

David Ford, Chief Executive

Inside this issue

National Epilepsy Week 3 Hot Topics 4-6 Research projects update 7

Champions Awards 8-9 St Piers news and FFWD project 10

Fundraising 12-13 Nikey’s story 14 Get involved 15

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What doyou think?

The impact of epilepsy on siblingsNews website ITV.com recently published a story about the siblings of children with health conditions such as epilepsy.

Young Epilepsy carried out similar research into the effects of having a brother or sister with epilepsy. It found that siblings have some worries and concerns, such as how their brother or sister will be supported in later life. On the whole, siblings have a positive outlook.

One 14 year old girl who took part in the research said: “I need to make sure I have a good job and make lots of money so I can look after my brother in the future.”

You can read more about this story on our website: youngepilepsy.org.uk/siblings

Do you have a sibling with epilepsy? Tell us what you think #epilepsysibling

Kelly Osbourne has a seizure Celebrity Kelly Osbourne recently collapsed and had a seizure while filming a television show. Epilepsy was ruled out after the seizure was filmed by the crew and studied by Kelly’s medical team.

The Young Epilepsy smartphone app enables you to record seizures and this can be immensely helpful when diagnosing the condition. The app has just been updated and boasts several new facilities so there’s never been a better time to download it.

You can download the app for FREE at youngepilepsy.org.uk/app

Pregnancyand epilepsyThe Daily Telegraph ran a story of a woman with epilepsy, Elisabeth Crank, who gave up her antiepileptic medication whilst pregnant.

elisabeth, who had previously suffered a miscarriage, did not tell her Doctor that she had given up her antiepilepsy drugs

whilst pregnant for fear of birth defects and miscarriage.

Professor Helen Cross, The Prince of Wales’s Chair of Childhood epilepsy said: “There are ongoing investigations about the effect

of antiepileptic drugs during pregnancy. It is crucial that women with epilepsy speak to their consultant about plans for antiepileptic drugs prior to starting a family, so that they can make an informed decision.”

Have you got any questions about epilepsy and pregnancy? If so, call our helpline on 01342 831342 or text 07860 023789

What do you think about the

way epilepsy is represented

in the media? Email us

your thoughts:

communications@

youngepilepsy.org.uk

Hot topics

Young epilepsy’s helpline service has been expanded so you can now send us a text message if you want help or information about epilepsy.

To contact us, send a message to 07860 023789 and one of our experienced and knowledgeable helpline team will respond within one working day.

For those happier talking on the phone, our confidential helpline can be contacted on 01342 831342 (Mon – Fri, 9am to 1pm). Alternatively you can email us at helpline@youngepilepsy.org.uk

“I’ve been to all the training days over the past two years.

They’ve all been of great use and benefit” – training delegate

The course will cover

New training courseFollowing feedback from supporters, Young epilepsy has introduced a new training course for parents, carers and health and education professionals interested in how epilepsy affects teenagers and young adults.

The Epilepsy and Young Adults course takes place on various dates at our surrey headquarters.

• medication (compliance and management)

• transition

• promoting independence

• leaving home

• lifestyle issues

• epilepsy and relationships

• sex and pregnancy.

our helplineText

Don’t forget we run a variety of training courses covering subjects such as medication, living with a child with epilepsy and understanding and managing complex epilepsy. For more information about all of our training courses, go to youngepilepsy.org.uk/training or call 01342 832243 ext 296.

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News from HQ

Young Epilepsy has broken new ground and published a pioneering report examining whether children with epilepsy are included in all aspects of school life. Called What Helps? What Hinders? Inclusion in Education for Children with Epilepsy, the report was based on first-hand accounts collected from children and teenagers from across Britain, along with proxy reports from parents and carers.

It is the first study of its kind to consider epilepsy and education from the young person’s perspective and was generously funded by the Paul Hamlyn Foundation. It makes a number of recommendations that schools can implement to ensure pupils with epilepsy have the best possible experience at school and reach their full potential.

Young epilepsy Chief executive David Ford said: “This is a vital piece of research that has provided us with a better understanding of the experiences of children with epilepsy in the UK school system. We need to capture the perspective of children with epilepsy and their take on the barriers to inclusion in education that they tell us they face.

“There are 63,400 people aged 18 and under living with epilepsy and we must provide support and services that are sensitive to their needs. We would encourage all schools to adopt our recommendations.”

A total of 23 recommendations were made for schools, healthcare professionals, parents and policy makers. Highlights from the recommendations include:

• ensuring teachers have access to specialist

epilepsy education and training

• better use of technology to help pupils

with epilepsy overcome memory and

processing difficulties

• recognising that pupils with epilepsy

are at greater risk of being bullied

More information about What Helps, What Hinders? can be found on our website: youngepilepsy.org.uk/inclusion-report

What Helps? What Hinders? Inclusion in Education

Help usYoung epilepsy is a world leader in epilepsy research. Our research team is presently involved in 14 projects looking at a range of subjects including:

• antiepileptic drugs

• the educational problems faced by children with epilepsy

• the Ketogenic diet

Donate now so that Young epilepsy can continue this vital work: youngepilepsy.org.uk/donate

Further funding for the sleep and cognition studyYoung epilepsy’s research team has been awarded £123,892 from Action Medical Research for its ‘sleep and cognition’ study.

This project will investigate the role of sleep in learning. It will also assess how epilepsy affects specific aspects of sleep and memory in children.

The three-year project, which had previously secured £55,000 of funding from the Reta Lila Howard Foundation, is already underway. It should lead to a better understanding of the causes of cognitive impairment in epilepsy including memory and attention.

More information about Young epilepsy’s

pioneering research work is on our website; youngepilepsy.org.uk/

research

Find out more

Epilepsy in infancy project One of Young Epilepsy’s research projects has received a major boost following a generous donation from The Charles Wolfson Foundation.

The Foundation has donated £226,206 to support the first phase of an ‘epilepsy in infancy’ project. This three year project aims to improve the treatment for young people with epilepsy.

It will involve studying patients under 12 months of age and their response to treatment. The project will establish a database that can be used by health practitioners when determining the best course of treatment for a particular diagnosis.

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The star-studded event, hosted by broadcaster Nicholas Owen and held at London’s City Hall, recognised the amazing contribution many ordinary people and organisations make to help young people living with the condition. Among those who attended were: singer Peter Andre, Gillingham FC footballer and Young Epilepsy Ambassador Leon Legge, Apprentice star and Young Epilepsy supporter Katie Hopkins, Dr Miriam Stoppard and eastender’s actor Himesh Patel.

The 23 winners came from a variety of backgrounds. Some of which included young fundraisers Imogen Miles and Marie Deville, student nurse Millie Power who has epilepsy herself and has worked tirelessly to raise awareness of the condition and Margaret Meehan and Rosie Prunty For instigating a programme of training activities and support that is helping children and professionals in Northern Ireland.

Jenny Chapman won the Orange Aero Inspirational Champion award. Jenny received the award for overcoming major challenges and for her determination to encourage other young people with epilepsy to follow their dreams. Jenny said: “This award has made me feel that I really am somebody who has been able to inspire others. It makes me feel really special and it makes me want to keep on doing what I am doing.”

Peter Andre received a huge cheer from the crowd when he said: “Just because you have this condition, doesn’t mean you can’t achieve this mission.”

Check out all our winners’ stories and see a video of the night on our website.

Find out more...

We’re already planning the 2014 awards and we want you to vote. Who do you know that is making a difference to young people with epilepsy? Maybe it’s a teacher, a nurse, a carer, family member.

Go online to register your interest. youngepilepsy.org.uk/champions-awards

Young epilepsy supporter and Apprentice star Katie Hopkins.

eastenders actor Himesh Patel

bought some celebrity style to

the awards.

Champions Awards – making a difference to young lives with epilepsy

Actors, sports stars, MPs and singers all came together with youngsters affected by epilepsy to celebrate the inaugural Young Epilepsy Champions Awards.

Peter Andre presents an award.

Watch a film of the night: youngepilepsy.org.uk/champions-awards

Laura sandys MP presents an award.

Collecting the award on behalf of River Island: The Lewis family, brothers Oliver and Joe Lewis and their mother emma stewart with daughter Lana stewart.

All the nominees together. every one

of them is an epilepsy champion.

Broadcaster and Young epilepsy

supporter Nicholas Owen (left), award

winners Imogen Miles and Marie Deville

and Gillingham FC footballer and Young

epilepsy supporter Leon Legge (right).

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Good Ofsted rating for St Piers School

Young Epilepsy’s St Piers School has received a good rating following a recent Ofsted inspection.

In a strong and very positive report, inspectors said the behaviour and safety of pupils was “outstanding” and said the school had a strong leadership team. The report also praised the school for the quality of its mathematics and English teaching and said the sixth form prepares students for “their next steps in life”.

Inspectors spent two days in the school and observed 14 lessons. They also held meetings with staff, students, parents and Governors.

Headteacher June Atkins said: “This was a very strong Ofsted report and all St Piers School staff should feel proud. The report shows that we have a great team in place and that with the correct support the young people in our care can achieve their full potential.”

St Piers is Young Epilepsy’s specialist school for children and young people aged five to 19 years of age. Based at Young Epilepsy’s Lingfield headquarters, the school specialises in teaching young people with epilepsy, autism and other conditions.

For information about places at St Piers School please go to school.youngepilepsy.org.uk

Fast Forward >>FFWD>> For Futures Worth Developing Young Epilepsy is working in partnership with Catalyst in the Communities to run workshops across London and Surrey for young people with the condition.

The >>FFWD>> programme is a great way to develop skills for the workplace. The two day workshop gives young people the opportunity to meet others living with epilepsy and develop confidence, communication, motivation and leadership skills. The workshop involves plenty of activities to help young people consider their options for the next step in life and have a shed load of fun on the way.

To register your interest in the workshops, please go to youngepilepsy.org.uk/ffwd

A video made by St Piers School students to mark Red Nose Day has been a major hit on YouTube and enabled them to show off their acting and musical skills.

The school’s Creative Arts team and students teamed up with a professional film crew to make the film, called Red Nose Compose. At the time of going to press well over 7,500 people had viewed the film!

You can take a look by visiting our YouTube channel youtube.com/youngepilepsy

Find out more...

St Piers College students at the South of England ShowgroundStudents from St Piers College had a great time at the South of England Showground when they took part in a major competition.

Several students took part in the Jim Green Memorial Competition, an agricultural contest for students studying at specialist schools and colleges in the Surrey/Sussex areas. They competed in several categories including: creating a ‘Village Fete Collage’, baking shortbread shapes, creating a 3D sculpture from recycled materials and planting spring bulbs.

Activities on the day included removing plant material from a plant bed, planting up a window box, construction of a female scarecrow and identifying construction materials. The students had a fantastic experience and their work received exceptional comments from event judges.

St Piers College is Young Epilepsy’s specialist college for young people and adults aged between 19 and 25 years of age who have epilepsy, autism and other conditions. For information about places at St Piers College please go to college.youngepilepsy.org.uk

Red Nose Compose!

“St Piers staff should be proud”

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A day at the racesJoin us at the stunning Lingfield Park for a thrilling day of racing. The event will open with a Champagne Reception, followed by a delicious three course lunch, afternoon tea and a chance to win some fantastic prizes in our auction.

The event takes place on Wednesday, 16 October. Book before 31 July and you pay £85 per person or £850 for a table of ten. After 31 July tickets will cost £95 per person or £950 for a table of ten.

To purchase your tickets please call Young Epilepsy on 01342 831245. We also have a variety of sponsorship opportunities available from £500. For more details please contact Kylie Prankerd on the above number or email kprankerd@youngepilepsy.org.uk.

We had a magnificent team of 16 runners take part in this year’s Virgin London Marathon and 11 participate in the Brighton Marathon. Our runners did us really proud. Team Young Epilepsy even broke a Guinness World Record with one of our runners finishing in the fastest time dressed as a nurse. We expect to raise over £40,000 for children and young people with epilepsy.

We have guaranteed places in the Virgin London Marathon 2014 and the Brighton Marathon 2014 and we would love you to join Team Young Epilepsy. Apply now by contacting the Fundraising Team on 01342 831245 or emailing fundraising@youngepilepsy.org.uk

Brighton and London Marathons

If running a full marathon doesn’t appeal, why not have a go at a half marathon? We have places available for anyone wanting to run in the Royal Parks Half Marathon which takes place in London on 6 October.

The route takes you through Hyde Park, Green Park and other noteworthy central London locations.

To register your interest please call 01342 831245 or email fundraising@youngepilepsy.org.uk

Royal Parks

Half Marathon

Got an idea? Need inspiration?Check out more fundraising stories and find out how you can get involved at youngepilepsy.org.uk/get-involved

Fundraising

We’ve teamed up with Give as you Live to make it straightforward to donate to Young Epilepsy. Just by buying your garden furniture or booking a day out with friends or family, you can raise money for us – at no extra cost to you.

Thousands of leading brands including Virgin Experience Days, Ticketmaster, Legoland Holidays, Crocus and Thompson and Morgan have signed up to donate a percentage of every purchase to us. The best thing is you won’t pay a penny more.

To raise money for us, without putting a penny on the cost of what you buy, start shopping with Give as you Live. Get started today, it’s easy! giveasyoulive.com/join/youngepilepsy

Young Epilepsy staff and supporters recently took part in a five kilometre Superhero run in Battersea Park in London. Fundraising Manager James Hunt tells us about the run.

“I have never run anything in my life before, except a tuck shop and I found I ate more than I sold so completing the Superhero run was a huge achievement for me personally. I am not the fittest of people after all, I do like cake.

It was an amazing day and to say that I did it and supported other Young Epilepsy runners was fab. My colleague Julia was Robin to my Batman and my other colleague Amy was Supergirl. Amongst other runners was long-time Young Epilepsy supporter Julie Harden whose son attends Young Epilepsy’s St Piers school.”

It’s not too late to sponsor James. Simply follow this link: justgiving.com/superherojames

You could also sign up to take part in one of our runs at youngepilepsy.org.uk/get-involved

Opera gala eveningA spectacular evening of opera was held at Grange Park in Hampshire raising an amazing £16,000. The audience was treated to a performance of Eugene Onegin. Young Epilepsy has been selected as Grange Park Opera’s first ever Charity of the Year and all the funds raised will go towards the new education resource centre. This centre will provide students at Young Epilepsy’s St Piers School with new, state of the art educational facilities.

Young Epilepsy President Sir Gerald Acher, centre, addresses a group at the Grange Park Opera Gala

“It was an amazing day and to say that I did it and supported the other Young Epilepsy runners was fab.”

Superhero run!

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Nikey’s story

Nikey Robinson was diagnosed with epilepsy as a young girl. At one point she was having anything up to 200 seizures a month and the condition had a major impact on her life.

Despite this, Nikey was very positive and always looked on the bright side of life. After 16 years of living with epilepsy, things seemed to be getting better for Nikey; she was living independently and thanks to a change in medication was experiencing around 10 seizures a month.

Sadly, it wasn’t to last. Earlier this year Nikey lost her life to Sudden Unexpected Death in Epilepsy (SUDEP). She was 23 years of age.

Nikey’s mother, Caron, explains what happened: “My daughter was seven when she had her first seizure. She couldn’t cope in mainstream school and by the time she was 13 she had to attend a specialist residential epilepsy school.

“There’s no escaping the fight we had on our hands over the 16 years following Nikey’s diagnosis. We had to fight for everything: her place at a special school, her assisted accommodation and even a blue badge for parking.

Find out more...

“Nikey lost her life to (SUDEP) on 21 March, 2013. It was silent, and motionless. The seizure alarms fitted to her bed were never set off. I found her in the morning and it was like she was asleep.”

Knowing only too well how epilepsy can affect a young person’s life, Nikey’s family is now doing all it can both to raise funds into epilepsy and SUDEP research and also to raise awareness of the condition.

Caron said: “As a family we are turning our energies to raising awareness of epilepsy but also to raise funds so that other families do not have to experience what we’ve been through. We hope to turn this negative into a positive.”

Help Young Epilepsy so we can support other families having the same experience. A donation will enable us to carry out research and provide support and assistance to children, young people and families affected by epilepsy.

Donate now via text. If you wish to donate, text PURP11£ (followed by the number of pounds) to 70070. You can also donate online at: youngepilepsy.org.uk/donate Find out more about SUDEP by watching our video: youngepilepsy.org.uk/sudep

“As a family we are turning our energies to raising awareness of epilepsy but also to raise funds so that other families do not have to experience what we’ve been through. We hope to turn this negative into a positive.”

Get Involved!

Help us raise

awareness of

epilepsy

Do you have epilepsy or care for someone who does?

What is your experience of the health and education systems. Have you ever faced discrimination? Maybe you have a positive story to tell? Maybe there is someone special in your life that has gone out of their way to help you or maybe you’ve had surgery that’s eased your seizures.

Whatever your experiences of epilepsy, please tell us your story. First-hand accounts of life with epilepsy are vital both for raising awareness of the condition but also to help people realise why our work is so important.

Please help us by logging on to our website and filling in a ‘Your Story’ form: youngepilepsy.org.uk/get-involved

Have you thought about getting involved and supporting Young Epilepsy? There are many ways you can help us and the vital work we do. For instance you could:

• join our fantastic group of volunteers, helping with all manner of tasks, learning new skills and getting to meet new people along the way

• encourage your employer to provide corporate support like Team Santander (pictured above) or nominate us as your organisation’s charity of the year

• undertake a fundraising challenge, such as a bike ride or, if you want to do something more exotic, trek to Machu Pichu, climb Kilimanjaro or trek the Sahara

We appreciate all the support we receive, no matter how big or small. If you can, please help us create better lives for young people with epilepsy.

If you are unable to dedicate time but would still like to show your support, you could make a donation by following this link: youngepilepsy.org.uk/donate. You will also find a regular giving form on the back cover that you can complete and post to us.

Staff from Santander volunteered to build a

low ropes course for St Piers’ students.

Find out more...

youngepilepsy.org.uk

Better futures for young lives with epilepsyYoung Epilepsy

St. Piers Lane, Lingfield, Surrey RH7 6PW

T 01342 832243 F 01342 834639 E info@youngepilepsy.org.uk youngepilepsy.org.ukYoung 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: 270

Our thanks go to ACH for their generous sponsorship of this

issue of the Voice.

Help us plan for the future!Regular donations are a vital source of funding for Young Epilepsy. By donating regularly you support our world-renowned research work and the support we provide families and others affected by epilepsy. Please donate and help us create better futures for young lives with epilepsy. Please return this form to: Ted Gibson, Fundraising Department, Young Epilepsy, St Piers Lane, Lingfield, RH7 6PW.

GIVING DETAILS

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

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

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

Email address ........................................................................................... Phone .....................................................................................

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

Please choose one of the below 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 below standing order mandate form.

STANDING ORDER MANDATE

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 ..................................................................................

Charity Reg No. 311877