SUMMER 2010 // issue 4 · centre as part of St Piers School? The centre provides a wide range of...

Further Education Collegewww.ncype.org.uk St Piers School Neville Childhood Epilepsy Centre Childhood Epilepsy Information Service

SUMMER 2010 // issue 4

Campaign for Champions for Childhood Epilepsy

Celebrities Max Clifford and Nicholas Owen tell us why they are supporting the NCYPE

Learn about the ketogenic diet

Outstanding! The inspectors said so and we’re shouting about it

Introducing free Epilepsy Education 4 Schools

Shinefor epilepsy!

Better Futures for Young Lives with Epilepsy

www.ncype.org.uk

It’s amazing what can be achieved in a few short weeks. A very successful Health Summit was held, with Dr Dougal Hargreaves as guest speaker, to discuss the NCYPE’s Champions for Childhood Epilepsy Campaign. This has resulted

in meetings with NHS colleagues to look at piloting new ideas for paediatric epilepsy health services.

Furthermore, it is fantastic that our 39 week residential care facilities for St Piers School received an Outstanding Ofsted grade and the school itself received an overall grade of Good with Outstanding aspects. We also received a ‘Good’ grade from the Care Quality Commission for our FE College residential care facilities. My congratulations go to all those who worked so hard to achieve these grades, and my thanks go to those parents who were generous in their praise to inspectors.

The Neville Childhood Epilepsy Centre has also had successes. The Care Quality Commission assessed the facilities and found them to be ‘excellent’. Plus, the building itself won a local authority building excellence award last week for ‘best community building’ – beating nine other finalists.

Our excellent facilities can be seen at one of our Open Days, more details can be found at our website – www.ncype.org.uk

Our new Principal, for both St Piers School and the FE College, has been appointed. Jonathan Sharpe, currently a Headteacher at a special needs school in Lewisham, will be joining us in September.

Outstanding!Message from David Ford, Chief Executive

Goodbye Sir

Under fives get a Sure Start

Impressing the inspectors

Celebrity Voice... Nicholas Owen

Causing Caos!

NCYPE welcomes Max Clifford

Run the adidas 5k

Scandinavian success

On the right path

The ketogenic diet

International Symposium

We want to hear from you! Email [email protected] with your ideas, comments or if you want to unsubscribe from our mailing list.

Out and about with the NCYPE

Epilepsy Education 4 Schools

Be a Champion for Childhood Epilepsy!

Ashley is 18, has epilepsy and poor sleep patterns. He’s been at St Piers School since 1999 and likes watching movies

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summer 2010 // issue 4

A ‘Golden Globe’ day out

Educating about Epilepsy

And the winners are…

Inside this issue:

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Be a Champion for Childhood Epilepsy!

The Better Futures Campaign has a new name – the Champions for Childhood Epilepsy Campaign! It is hoped that, as the Campaign is rolled out nationally, the new name will encourage more people and organisations to get involved and be a real ‘Champion for Childhood Epilepsy’.

The Champions for Childhood Epilepsy Campaign has attracted over £125,000 of funding from four organisations; the Linbury Trust, the Peter Harrison Foundation, the Gosling Foundation and the Rank Foundation. NCYPE Strategic Development Manager, Alan Cruickshank said, “We are extremely grateful for this vital injection of funds, which will ensure we can promote campaign messages as effectively as possible.”

Education pilot scheme gets top marks

As a direct result of the increased understanding of epilepsy that the Champions for Childhood Epilepsy training brings, two young people with epilepsy from schools in our pilot scheme have been referred for assessment. Plus, better links between health and education have led to changes in medical management for one case in particular.

One school commented…

“The students with epilepsy are explaining to the others how it affects them and how they feel when they’re recovering. This idea came from talking to your students after the course and which I thought was a brilliant idea. Who better to answer questions than the person who experiences it?”

Health Summit a successA Champions for Childhood Epilepsy Campaign health summit was held at the NCYPE. This meeting of NHS professionals, clinicians, and concerned parents looked at how childhood epilepsy health services across the south east region could and should be improved.

A number of potentially useful new ways forward emerged. A report on the summit and the presentations shown on the day are available from our website: www.ncype.org.uk/campaign

Are you involved with an NHS organization who might be interested in working with the NCYPE? Together we can develop models of good practice that can really make a difference for thousands of children and young people across the UK.

Get your MP to support the

Campaign! Write to them asking them to support

‘EDM 265’Find a helpful draft letter here: www.ncype.org.uk/

campaign

For a copy of the pilot report please visit www.ncype.org.uk/campaign


www.ncype.org.uk

Goodbye Sir

Impressing the inspectors

Under fives get a Sure StartDid you know the NCYPE has a Sure Start centre as part of St Piers School?

The centre provides a wide range of services to over 240 families from the local area, including; parent and toddler groups, breastfeeding counselling, dads club, paediatric first aid courses and lots of other things too!

Manager Kären Pallot has been running the centre since it started in 2008 and says, “I’m really proud of what we’ve achieved in a short time. Seeing the way that just a small amount of support can help a family is amazing. I urge all families with young children to go along to their local Sure Start centre and find out what it can do for them!”

For more information visit www.surestartlingfield.org.uk

We are sad to announce that our St Piers School Headteacher, Nick Byford, is retiring at the end of the summer term. He has spent seven successful and inspirational years as Headteacher and 15 years at the NCYPE.

Nick is not retiring completely however, he has a new career ahead of him at a museum informing visitors on ceramic ware and its development through history.

“It was a ‘once in a lifetime’ opportunity to be given the tenure of such a wonderful school. I am very proud of our students’ achievements and the high level of professionalism and commitment from everyone who made this happen,” said Nick. “St Piers will always have a special place in my thoughts and I wish the school and the NCYPE all the best for the future.”

Everyone at the NCYPE returns those wishes to Nick for his retirement, he will be greatly missed.

St Piers School and 39 week residential provision have both been inspected by Ofsted this term.

The care homes were awarded an Outstanding grade, while the school received a Good with many Outstanding aspects. Inspectors were particularly impressed with the individual delivery of care according to need, and the respect and dignity shown to the young people.

Head of Care for Residential Special School Services at the NCYPE, Gill Walters, said, “We are absolutely delighted at being awarded an Outstanding Ofsted grade. The whole team constantly works so hard to ensure the very best care for the young people living at the NCYPE and this grade is testament to that. I am extremely proud of everyone involved.”

Find the official reports on Ofsted’s website. Search for the National Centre for Young People with Epilepsy on www.ofsted.gov.uk


Coming Soon - new school prospectus

in July

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Causing Caos for National Epilepsy WeekFour lads with epilepsy from the NCYPE’s St Piers School have formed a band called CAOS (they are Curtis, Alex, Ollie and Sam) and have released a fantastic self-penned single! Entitled, The Love You Need I Cannot Find, it is available to download from our website for a donation. Proceeds will go to support the NCYPE so visit www.ncype.org.uk/school to get yours now!

How does it feel to become a celebrity ambassador for the NCYPE?I am delighted to be getting to know the NCYPE and what the charity does. So many people know so little about epilepsy, it’s great to be helping to spread the word as widely as possible.

What did you know about epilepsy before being involved with the NCYPE?If I’m honest, not very much! Like many people I have had friends at school and work colleagues with the condition, but beyond that I was very ignorant. Being involved with the NCYPE has already taught me a great deal.

Do you think people should learn more about epilepsy generally? Absolutely, I think there are a lot of misconceptions surrounding epilepsy. One of these is that people see it as something that is not ‘serious’ in medical terms, whereas it can in reality be extremely limiting and many people suffer a great deal.

Epilepsy is a long term condition that affects almost half a million people in the UK but it’s not in the news very much - why do you think that is?It’s a very noisy and crowded world out there with many charities trying to get noticed. It can be extremely difficult to get your voice heard. I hope that the small contribution I can make to help bring epilepsy to the fore will make a difference.

What’s coming up for you this year?Well aside from my ‘day job’ at the BBC, I’m really looking forward to giving some lectures aboard a luxury cruise liner in the middle of the Baltic! I cover aspects of my career from my days in newspaper journalism through to my time as a royal correspondent and of course include Strictly Come Dancing, I always get asked about that!

This issue, we are delighted to introduce another NCYPE Celebrity Ambassador – top TV journalist, news anchor and Strictly Come Dancing star, Nicholas Owen!

Celebrity

Nicholas Owen


Some girls from Cory House had a great time

visiting the local Fire Station recently. As part of

their ongoing community life skills programme,

they were shown round the station and learnt about

fire safety. They had great fun trying on the uniforms

too as you can see from this pic showing Kirsten

and Amanda!

Nee Nar!

www.ncype.org.uk

As part of the school’s recent science week, organised by teacher Anna Barratt, every class visited the ‘giant lab’ set up in the School Hall. Students donned their white coats and examined soil ph levels, took part in an archaeological dig and discovered the properties of various liquid substances as well as looking at various ‘specimens’. Amy is pictured bravely holding a spider!

Both the school and college held Mad

Hatters tea parties earlier this year.

St Piers School raised money for victims

of the Haiti earthquake and FE raised

money for Fairtrade charities. At school,

everyone wore their hats all day and

played hat themed games such as ‘hat

hoopla’ and ‘pass the hat’. FE students

made some fantastic hats and themed

cakes and even the staff dressed up

too! All tucked into themed party food

based on the ‘Mad Hatter’s Tea Party’

in ‘Alice in Wonderland’.

Experimental Fun


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The FE common room took on a certain ‘je

ne sais quoi’ when students turned it into

a French Bistro for the day. The students

ran it as part of their business course.

The exercise taught them about profit and

loss and to consider outgoings when running

a business. Overall, it was a great success,

with customers treated to croissants and

patisseries galore. Thomas, Dominic, Neil

and Gareth are pictured below in their

‘authentic’ French outfits!

Both the school and college held Mad

Hatters tea parties earlier this year.

St Piers School raised money for victims

of the Haiti earthquake and FE raised

money for Fairtrade charities. At school,

everyone wore their hats all day and

played hat themed games such as ‘hat

hoopla’ and ‘pass the hat’. FE students

made some fantastic hats and themed

cakes and even the staff dressed up

too! All tucked into themed party food

based on the ‘Mad Hatter’s Tea Party’

in ‘Alice in Wonderland’.

Bon Appetite!

Students from FE taught the professionals a thing or two about having epilepsy when they took part in a seminar at the NCYPE’s very successful Health Summit. The Summit was Chaired by NCYPE’s Chair of Trustees, Anna Walker, who is pictured centre flanked by students, Thomas and Rohan.

Teaching the

professionals

Mad as Hatters!

www.ncype.org.uk


The Childhood Epilepsy Information Service (CEIS) is launching a national schools programme called ‘Epilepsy Education 4 Schools’. A team of trained education officers will work in the pilot area of the south east of England.

The team will deliver epilepsy awareness lessons directly to children and young people in their schools. They will also be involved in delivering epilepsy training to school staff so that many more children with epilepsy will get the support and understanding they need.

The CEIS is grateful to over 15 funders for their generous support of this project, which means that schools will receive the service for free.

For more information about Epilepsy Education 4 Schools visit our website at www.ncype.org.uk/epilepsy/epilepsy-awareness-in-schools

A newly updated Parent’s Handbook is available now from the NCYPE. Full of information about epilepsy and how to deal with it, parents can get them for free! Call 01342 832243 ext 508 or email [email protected]

Free Epilepsy Education 4 Schools

New Parent’s Handbook out now!

JULY 14

NCYPE Open Day

JULY 12

Childhood Epilepsy training for healthcare professionals

OCTOBER 1

Lingfield Race Day

OCTOBER 5–8

Ketogenic diet International Symposium

Diary Dates


Get trained!The Childhood Epilepsy Information Service (CEIS) training programme offers a wealth of courses for professionals and has received some great feedback from attendees including;

One Community Paediatrician said, “I really enjoyed this meeting. The speakers and topics were of the highest quality, the surroundings were superb and the food was delicious. Congratulations to all.”

For a full list of training courses call 01342 832243 ext 296, email [email protected] or visit www.ncype.org.uk/epilepsy/epilepsy-training-for-professionals

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Educating about epilepsy! And the winners are...

A lucky group of FE students thoroughly enjoyed a recent trip to London to see Shakespeare’s Globe theatre and Sir Francis Drake’s famous Golden Hinde galleon. They were treated to a guided tour of both the famous theatre and the ship, where they learnt all about aspects of life in Elizabethan times.

Drama tutor, Murray Smith, organised the trip and said, “Everyone really enjoyed the day, some of the students had never been to a theatre before and seeing the open air stage really impressed them. They also loved being shown round a galleon by a ‘real’ Elizabethan sailor and learning about life at sea fighting the Spanish Armada.”

The FE college’s outreach group is made up of students who voluntarily go and talk about their experiences of epilepsy to community groups, schools and businesses outside the NCYPE.

Group members present their personal experiences of epilepsy in a candid way offering first hand accounts and answering questions to help others understand how the condition can affect people and dispel the myths that surround it.

Any group or business can benefit from a visit from the NCYPE outreach group – email [email protected] for more information.

Staff and learners from FE recently represented the NCYPE in the annual Jim Green agricultural competition at Ardingly showground. They took part in a variety of tasks competing against other Colleges including ‘making a wooden trough planter’ for which they won first prize and ‘identifying beans and pulses’ where they scored 19 out of 20! The day was a great success for the learners, both for winning prizes and for the opportunity to make new friendships and links with other providers.

A ‘Golden Globe’ day out!

The group on a recent trip to a local Sixth Form college, where students were very interested to discover more about epilepsy and the NCYPE.

The huge decorated stage at Shakespeare’s famous open air Globe Theatre

The NCYPE team identifies beans and pulses

www.ncype.org.uk

Run for team NCYPE

ACH provides high quality residential care homes for people with learning disabilities. Our vision is of homely environments in which the care and support provided is professional, empowering and person centred.

web www.achuk.com email [email protected] tel 020 8502 4466

Our thanks go to ACH for their generous sponsorship of this issue of the Voice newsletter.

NCYPE welcomes Max Clifford as new Vice PresidentThe renowned PR guru Max Clifford is the latest celebrity to pledge support for the NCYPE by becoming a Vice President.

Epilepsy is a condition with personal meaning to Max. He developed epilepsy at the age of 46 as a result of early life brain scarring, and was banned from driving for 12 months as a result.

“We are delighted that Max has agreed to become an NCYPE Vice President,” commented the NCYPE’s Chief Executive, David Ford. “It’s an exciting time for Max to join us, with our Champions for Childhood Epilepsy Campaign tackling the ‘triple whammy’ faced by young people with

epilepsy – the condition itself, poor health and educational support and the stigma – wrongly – attached to epilepsy.”

Max Clifford said, “As someone who has suffered from epilepsy, I am happy to try and help the 60,000 young people with the condition throughout the UK.”


Join Team NCYPE to run, walk or jog the adidas Women’s 5k ChallengeWhen? Sunday 5 September 2010 Where? Hyde Park, LondonThis event is open to women of all ages and abilities, so whether you are a tortoise or hare, it’s a fantastic day out for all. We will support you in raising sponsorship and will be there on the day to cheer you on!Find out more at www.ncype.org.uk/fundraising


Gallop down to…the NCYPE Race Day at Lingfield Park Racecourse on October 1! A BIG thank you to Lingfield Park Racecourse for making us their charity of the year again! As a result, they are holding a special NCYPE Race Day on 1 October. A champagne reception is followed by a delicious three-course meal, thrilling racing, a live auction, grand prize draw, games and more. Individual tickets start from £80 with tables of ten available. Email [email protected] or call 01342 831245 for more information.

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Trainee nurse, Mette Larsen, came over from her native Denmark on a month’s work placement. She wanted to experience the multidisciplinary working that the NCYPE uses and work with children with epilepsy before writing her dissertation.

Mette is now working as a nurse in Denmark. She said of her stay at the NCYPE, “I was truly impressed with the NCYPE and with the multidisciplinary approach there. In Denmark we do not have anything like the NCYPE. Danish doctors have shown quite an interest in my stay here, and I hope to share the knowledge I gained at the NCYPE with people from the Danish Health System, enabling Danish children and their families to benefit.”

Scandinavian success!

The NCYPE is constantly pushing the boundaries of innovation in its services. At the Neville Childhood Epilepsy Centre a recent international nursing exchange programme is one such example.

On the right pathA new learning and development pathway programme has been produced for Nurses working at the NCYPE. It has been developed to help nurses to continually develop their careers and advance their knowledge and skills. Secondments for nurses from the NHS and other organisations are also available.

Head of Health Services at the NCYPE, Hayley Bath, said, “This approach is designed to help us not only give the best we can to our nurses, but also to get the best we can from them. Ultimately, we want to improve and enhance epilepsy services nationally to help meet the needs of the 60,000 young people with epilepsy in the UK.”

The programme provides study days, master-classes and regular academic meetings for NCYPE nurses. They can also undertake the Professional Diploma in Epilepsy Care through a distance learning package with Leeds Metropolitan University.

For more information, visit the health pages on the website: www.ncype.org.uk/health

”

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Better futures for young lives with epilepsyThe NCYPE, St. Piers Lane, Lingfield, Surrey RH7 6PWTel: 01342 832243 Fax: 01342 834639 Email: [email protected] www.ncype.org.ukRegistered as a non-profit making charity No. 311877 The National Centre for Young People with Epilepsy Charitable Trust

The Sharp End

Publication No. 097

The International Symposium on the dietary treatments for epilepsy and other neurological disorders is being held at The Sheraton Hotel, Edinburgh, Scotland, UK from 5 – 8 OCTOBER 2010 and is open to all Neurologists, Epileptologists, Research Scientists, Nurses, Dieticians and other Allied Health Professionals. Visit www.matthewsfriends.org for more information.

The ketogenic diet is a high fat diet, used in the treatment of epilepsy. It is not a new treatment, having been around for over 100 years, since the time it was discovered that starvation helped seizures. This of course was impractical and it was found that by having your main intake as fat, the same metabolic effect occurred in the body, namely we produced ketones.

However, it took until two years ago for the first randomised controlled trial to be published, demonstrating the definite effectiveness of the diet, compared to no change in treatment. We also demonstrated that there was no difference in effect between the types of diet that were administered. Certainly over the past 10 years there have been increasing publications with regard to use of the diet in epilepsy.

For some time it has been determined that a specific defect occurs in some individuals

The ketogenic dietwhere the brain struggles to transport glucose, usually causing epilepsy with a movement disorder. However, most recently it has been suggested that more individuals with early onset absence epilepsy in isolation may indeed have this defect. This may have implications for individuals who have drug resistant idiopathic generalised epilepsy and the fact that the ketogenic diet may have wider application than previously determined.

There is also further study in the use of alternative diets, such as the Modified Atkins Diet. This has been shown to be more flexible, more liberal in what is allowed and may be more indicated in older children and adults. Certainly the diet is receiving more attention from adult neurologists and the treatment is being considered in this population. There is no question however that more study is required to determine who may be the most suitable and when it should be considered.

Most exciting is the fact that we in the UK are organising the next global international conference on dietary treatments for epilepsy. It is being held in Edinburgh in October when a large number of international experts will come together to discuss, not only the clinical use of the diet, but also the basic science behind it.

Details of the symposium are below. For more information about the ketogenic diet at the NCYPE email: [email protected]

The Prince of Wales’s Chair of Childhood Epilepsy,ProfessorHelen Cross,discusses the latest developments in the ketogenic diet.

You can now find the NCYPE

on facebook!

SUMMER 2010 // issue 4 · centre as part of St Piers School? The centre provides a wide range of...

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