ncype! - Young Epilepsy

january 2009 // issue 1
Autumn 2009
The new centre is being named after
the man who devised the concept leading paediatric neurologist and NCYPE
trustee Professor Brian Neville - who
was also very involved in the four-year,
£6.9m fundraising campaign.
‘Amazing’ new epilepsy centre opens
‘Amazing’, ‘This will make a real
difference to families of children with
epilepsy’.
Those were just some of the reactions from staff
and students at the NCYPE to the new Neville
Childhood Epilepsy Centre which opened its
doors in October.
The £6.9m state-of-the-art centre hosts vital
diagnostic, assessment and rehabilitation
services for children and young people with
epilepsy across the UK. Funded through the
generosity of donors, the Centre offers purposebuilt, child friendly facilities. Electroencephalogram
(EEG) suites and family accommodation are
comfortable and welcoming. Paediatric
neurologists as well as epilepsy specialist
nurses, speech and language and occupational
therapists and a dedicated teacher are also
based on site.
www.ncype.org.uk
Further Education College
St Piers School
The NCYPE’s Chief Executive, David Ford, said:
“The Neville Childhood Epilepsy Centre will give
a huge boost to the fight against childhood
epilepsy. It will achieve this not only through our
current diagnostic, assessment and rehabilitation
services but also through cutting edge scientific
research and a wide-ranging programme to
share the knowledge gained with professionals,
parents and young people themselves.”
in this issue ...
Students have their shout
Children’s seizure diary launched
The Sharp End - news for epilepsy
professionals
Better futures for young lives with epilepsy
Neville Childhood Epilepsy Centre
Childhood Eplilepsy Information Service
autumn 2009 // issue 2
...
Assessment, diagnosis and rehabilitation at the Neville Childhood Epilepsy Centre
es
Real liv ge
Rhys a
7
.
Real
Sar lives
Rhys, now 7, was eight months old when
he was diagnosed with epilepsy. At 18
months he developed alternating hemiplegia periods of weakness which can affect the whole
of one side of his body and also swallowing,
speaking and feeding. Rhys was referred to Great
Ormond Street Hospital in May 2008, and then
for assessment at the NCYPE as his educational
development was suffering, he had behavioural
problems, lacked concentration and had anxiety
attacks.
ah a
ge 14
Fourteen year old Sarah has epilepsy, an
autism spectrum disorder and attention
deficit hyperactivity disorder. She was referred
to the NCYPE after her condition began to
have a serious impact on her social and
communication skills and on her learning.
Sporting activities at school were exacerbating
her seizures and this meant she was often
excluded from these activities as a result.
Following a 10 week stay at the NCYPE
assessment centre, Sarah's mother
After spending six weeks at the NCYPE
commented, “Sarah emerged from the
assessment unit, Rhys was able to deal with
assessment as a fitter, more confident and
anxiety more easily and his concentration
more positive young lady. The NCYPE’s staff
improved. After medication adjustments his
provided essential help and excellent pastoral
seizures and hemiplegic episodes were reduced. care. Up to then, nobody had provided us
Rhys’ mum Claire says “Rhys is very energetic,
with any diagnoses of the complex nature of
he loves playing football and enjoys marching to the additional neurological problems Sarah
music, so the change in him was great to see.”
was facing, or with such an insight as NCYPE
has done.”
The Neville Childhood Epilepsy Centre from start to finish
This project would not have been possible without the generosity of our donors: The Wolfson Foundation, Weston Foundation,
Trust, Harvey & Allison McGrath, Medicor Foundation, UCB Pharma, 29th May 1961 Charity, Drayson Foundation, Welton Foundation, Baily
2
www.ncype.org.uk
..
Assessment, diagnosis and rehabilitation at the Neville Childhood Epilepsy Centre
...
Home from Home comforts
Young people stay at the Centre for anything from two days
to 12 weeks, so the new Centre is designed to be a homefrom-home. Each bedroom has a TV and ensuite facilities and
children are encouraged to bring toys, books or even their own
duvet cover if they like. Even the doors can be personalised with
their name or picture! Bright and cheery living and dining areas,
two family apartments for parents and siblings and a beautiful 60
acre rural campus complete the picture.
A clinician writes
Consultant
paediatric
neurologist, Sarah Aylett,
leads the Assessment
and Rehabilitation Team at
the Neville Childhood
Epilepsy Centre. She sees
huge benefits in using the
new facilities and offers
her views below:
“The way the Centre has been designed, and
its welcoming atmosphere, has really brought
the team together, allowing us to offer a much
more seamless approach to our services.
Children may stay for several weeks for
assessment, so it is vital that they feel
comfortable in their new surroundings and that
parents feel reassured that their children are
happy staying with us.
Clinically, the positive environment helps us
when assessing the children as they are more
likely to behave naturally, allowing us to gain
a true reflection of their seizures, learning and
behaviour. The Centre provides everything
under one roof for children needing
rehabilitation. Having the facilities such as the
classroom and the play areas means we can
focus on the whole child and not just their
epilepsy. This really helps when preparing
detailed recommendations for local clinical
teams.
Furthermore, the students here know that they
have a friendly place to come when they need
an EEG or other medical help. The calming
ambience is also very good for those with autism
and other learning disabilities.
We’re aiming to make the Centre a focus for
epilepsy research in the UK and also have the
opportunity to expand all our services. I, for
one, am very excited about what we can
achieve here!”
Charles Wolfson Charitable Trust, Foyle Foundation, Henry Smith Charity, ICAP Charity Day, Muir Maxwell Trust, Sir Jules Thorn Charitable
Thomas Charitable Trust, CHK Charities, AstraZeneca, Tesco Charity, Swire Charitable Trust
3
OurShout!
autumn 2009 // issue 2
School story
College story
Kayleigh’s riding high
Since joining the NCYPE Further Education College when
she was 16, Kayleigh, now 19, has combined business
administration studies with numerous vocational courses. She has
accessed courses and work experience including, child care,
health and social care and hair and beauty at
East Surrey College. “The best bit is having your
hair done and working with other students to try
out new ideas on a model,” says Kayleigh. With
support from staff Kayleigh has developed new
techniques to deal with the memory problems
caused by her seizures.
The NCYPE’s St Piers School held
its annual activity week in July and it
was a huge hit with students. Fifteen year
old Manuel says, “There were lots of things
to do like boxercise and archery. My
favourite was boxercise because it was fun
punching the bag. The PE teachers always
arrange fun for us.”
Continuing the sporting theme, earlier in the
year St Piers sixth former Ian, 16, completed
the Lingfield 6 mile fun run with 700 other
entrants – a fantastic achievement as he has
diabetes as well as epilepsy.
Diary Dates
Campaign for change
Message from David Ford, Chief Executive
Date
Event
20 November
2009
Seizure Diary
Launch
27 February
2010
A Night at the
Opera
26 March
2010
Purple Day for
epilepsy
awareness
29 April 2010
Charity Golf Day
What would you like to see in the
next issue of the Voice? Contact
the editor via - voice@ncype.org.uk
4
www.ncype.org.uk
Welcome to the second edition of
the Voice. As well as our work with
students here on campus – and as you
can see from the stories here the young
people are truly inspiring – we are also
now looking further afield to help all
children with epilepsy. Our Childhood
Epilepsy Information Service (see page 5)
is hugely in demand and the resources
we are creating for parents and young
people are proving highly popular.
However more widely, standards in
epilepsy care and education are
Children take control
with new seizure diary
Children with epilepsy have a fantastic new seizure diary
filled with fun activities. A parent who attended one of the
NCYPE’s Childhood Epilepsy Information Service Conferences in
2008 spotted a gap in the market and helped the NCYPE team
create this diary especially for youngsters aged 5-10. This is
believed to be the first one of its kind in the UK.
The diary has space for recording seizures in a fun way - a vital
help to doctors in diagnosing and managing epilepsy. It is full
of pictures and cartoons donated by famous children’s illustrators
including Lauren Child, Axel Scheffler and Aardman Animations. Nick Sharratt designed the
lively front cover. Thanks to the support of Sanofi Aventis, it is available free of charge by
calling 01342 832243 ext. 296 or by emailing info@ncype.org.uk
Helping hand
for parents
A new NCYPE
handbook for parents
of children newly diagnosed
with epilepsy is also available
free of charge by calling
01342 831342 or emailing
enquiry@ncype.org.uk
currently not good enough and so
many young people with epilepsy
are being let down by the very
system which should be supporting
them. We are committed to
changing this situation. A new
NCYPE ‘epilepsy champion’ pilot
project is underway with 7 schools
near our Surrey campus, and we
are lobbying for schools to be
required by law to address the
health and well being of children
with long term health conditions
including epilepsy - and for Ofsted
to inspect on this basis. Find out
how you can join our campaign at
www.ncype.org.uk
“We wanted something a child could
take to school and which would look
and feel like an ordinary diary – we’re
delighted with the amazing support
we’ve had from children’s authors and
illustrators,” says NCYPE Childhood
Eplilepsy Information Service
Manager, Gill Gallagher
A mum’s story
- how my idea
came to life
The mum who
conceived and edited the diary, freelance editor
Caroline Muir, said: “My daughter Anna has epilepsy and
the standard seizure diaries were really boring – so Gill
and I came up with this! I am really pleased with the
finished result.” Ten year old Anna also appears in the
diary. “The doctors found out I had epilepsy when I was
seven. After a year and a bit I got very embarrassed but
not now – no-one is perfect. Epilepsy is not who I am, it
is just a bit of me.”
5
autumn 2009 // issue 2
News in brief
Wat-er success for
college students
As part of the
work of their
citizenship tutor
group, NCYPE
college students
Paul Tucker
and Thomas
Woolgrove raised
£1040 for Pump
Aid/Aqua Aid who
supply water to
communities in
Africa.
Beside the seaside
Back in August some St Piers
School students went on
holiday to Hayling Island. Staying in
a caravan, they had a great time,
“All the students loved going to
Marwell Zoo, as well as our trip to
Portsmouth to see the boats,” said
NCYPE’s Jessica Andrews. “Many
students gained new experiences
and overcame fears such as
swimming in the sea. Everyone is
already looking forward to next
year’s holiday!”
6
www.ncype.org.uk
from around NCYPE
Get your running shoes
on for the NCYPE!
Can you run 26 miles?
Can you raise loads of
money for NCYPE? Then
you could have one of only
15 guaranteed NCYPE
places in the first ever
Brighton Marathon on 18 April 2010!
Thousands of runners will race the 26.2
miles around this vibrant city, so why not
get on your running shoes and take part
in this incredible challenge and help raise
money for your favourite charity!
For more information contact the NCYPE
Fundraising Team on 01342 831245 or
email fundraising@ncype.org.uk
Sarnies For Tsunami
Some of the
students from the
Further Education
college at the NCYPE
wanted to raise money
for victims of the recent
Tsunami in American
Samoa and Sumatra.
They decided to sell
bacon sandwiches to
staff and friends from the
college and raised an
impressive £269 for the
cause.
Donation Form
Card no:
You can make a donation to the NCYPE by filling out the form
below, alternatively you can donate online by going to our
website www.ncype.org.uk
Valid from:
I would like to donate to the children and young people at the
NCYPE
Gift aid:
If you are a UK taxpayer and sign this declaration, the NCYPE
can reclaim an additional 28p for every £1.00 you donate,
therefore making your gift even more valuable.
Amount £
Expiry date:
I enclose a:
Gift aid it
Cheque
Postal Order
Yes
No
CAF voucher
Signature
Or please debit my:
Switch
Mastercard
Mr/Mrs/Miss/Ms (please circle)
First name:
Visa
Postcode
Date
Once you have completed the form, please send it with your
donation to:
The National Centre for Young People with Epilepsy (NCYPE)
Fundraising Department, St Piers Lane
Lingfield, Surrey RH7 6PW
Surname:
Address:
For more information about fundraising, please call us on
01342 831245 or email: fundraising@ncype.org.uk
Postcode:
Your gift……..their future.
You can make a difference. To find out how to leave a legacy to the NCYPE, please call us on 01342 831245
Thank you!
Join us for a glamorous
Night at the Opera
Let the NCYPE whisk you
away for a wonderful
evening of Opera and Song!
We are inviting you to join us
for this exclusive event which
takes place at the magnificent
Ashdown Park Hotel in East
Sussex on Saturday 27
February 2010. Guests
will enjoy a fantastic
3-course meal as they are
treated to a special performance
by professional operatic singers Melisma. If you would
like to join us for this truly unique and magical evening
please contact the Fundraising Team on 01342 831245
or email fundraising@ncype.org.uk
The Fundraising Team would like to
thank Reed Business Information (RBI)
for their generous support in 2009. The
company which has offices local to the
NCYPE, has supported us throughout
the year by lending a hand on a
number of volunteering projects on
our campus. They have also raised
over £3,000 from various events
including a cake sale and staff fun day.
ACH provide 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.
www.achuk.com, email:
info@achuk.com, tel: 020 8502 4466
We would like to thank ACH for their
generous sponsorship of this edition
of the Voice newsletter.
7
autumn 2009 // issue 2
The Sharp End - an update for professionals
p
Delegates at the recent International League Against Epilepsy (ILEA) congress in
Budapest and European Paediatric Neurology Society (EPNS) congress in Harrogate
(pictured) were pleased to see the NCYPE exhibition stand providing information about
training and support services and the new Neville Childhood Epilepsy Centre. If you have a
forthcoming conference and you would like to involve the NCYPE, contact us at
communications@ncype.org.uk
Research
Update
Professor Helen Cross, The Prince of
Wales’s Chair of Childhood Epilepsy,
summarises current research activity:
“A key aim in Epilepsy Research is for a
better understanding of the underlying
mechanisms in childhood epilepsy and the
natural history of associated behaviour and
learning difficulties. This necessitates
examining all facets of childhood epilepsy
from basic mechanisms, looking at
underlying causes through to intervention
and ultimate outcome.
Programmes are ongoing in all areas led by
principal investigators across UCL-Institute of
Child Health, Great Ormond Street Hospital &
NCYPE; myself, Professor Brian Neville,
Professor Charles Newton, Dr Rod Scott, and
Dr Richard Chin. Within the NCYPE we continue
to advocate services for all children with
ongoing epilepsy and how we can improve the
situation. This is emphasised through the
NCYPE campaign for a consistent approach to
childhood epilepsy by primary care trusts.
We are very excited about the opening of
the Neville Childhood Epilepsy Centre. Our
research continues with active collaboration
both within and outside University College
London, nationally and internationally. We
now aim to consolidate our position with
regard to childhood epilepsy research by
looking outside medicine towards integration
with education, therapy and care to formulate
research programmes within these areas. I
very much hope that we can increase
collaboration with formation of a
Developmental Epilepsy Group, incorporating
other departments, not necessarily from the
medical perspective but also from education
and care, across University College London
and beyond. Our first meeting is planned for
late 2009.”
For a full copy of Professor Cross’s annual
report for 2008/9 as The Prince of Wales’s
Chair, please see www.ncype.org.uk
january 2009 // issue 1
Better futures for young lives with epilepsy
St.Piers Lane, Lingfield, Surrey RH7 6PW
Tel: 01342 832243 Fax: 01342 834639 Email: info@ncype.org.uk www.ncype.org.uk
Registered as a non-profit making charity No. 311877 The National Centre for Young People with Epilepsy Charitable Trust
Publication No. 070