Name

Programme

Young
Epilepsy

Amount Awarded
Organisation Location

72,595

Start Date

13/02/2015

End Date

01/12/2017

London

Region

Grant

Better
futures

Tandridge

1. Charity background why and when it was set up .

In 1904, a school was built exclusively for children with epilepsy, where staff used the local onsite farm, garden and wildlife to teach pupils.
After World War One, soldiers with epilepsy that had been caused by brain injury received
rehabilitation and by 1939 the colony was leading the way in national epilepsy research.
Children and young people with epilepsy and other neurological conditions were admitted to the
school and then in 1989 the name changed again to St Piers. In 2001 St Piers Further Education
College building was open and we were known as The National Centre for Young People with
Epilepsy.
On 1 November 2011 the charity launched its new name, Young Epilepsy. The new name reflects
the change to a national charity that supports the 112,000 children and young people under 25
with epilepsy in the UK.
We know there is a huge demand for information and support for parents and professionals and
a need to improve access to, and quality of, health and education services.
The charity has developed a new range of services since 2008 including our helpline, health
information resources, training courses for professionals in health, social care and education and
the promotion of good practice in schools.

2. Who it helps

We saw the launch of the life changing Transitions project in London

which is supporting young people struggling with their epilepsy,
move from education into adulthood.
We launched the Connect programme in regions across the UK which
is providing vital support for 450 young people with epilepsy and their
families, reducing isolation and increasing independence.
We also saw the opening of the brand new Griffiths Therapy & Work
Skills Centre on our Lingfield campus helping young people with the
most complex epilepsy to gain valuable life skills to take into the
community.
Over 105 schools and more than 1100 staff in Merseyside have
received our training which has also educated over 2,500 pupils
through assemblies and workshops. This has been invaluable in helping to
dispel the stigma that surrounds epilepsy amongst young people
themselves, building an inclusive learning and social environment for
children with epilepsy.
Young people entering further or higher education have been supported
through our Higher Education project funded by The James Lewis
Foundation. Over 400,000 students now have direct access to a
dedicated member of staff who has an understanding of the
impact epilepsy can have on a young persons education and
lifestyle. Now 29 higher education institutions have achieved our
Epilepsy Friendly mark.
Plus we have almost finished the fundraising campaign to build our
brand new School for children and young people who are the
affected by their epilepsy and other associated conditions.
How its helped the charity itself
Train 1,740 healthcare professionals on epilepsy treatments,
medication and impact on learning and behaviour.
Deliver epilepsy awareness training to over 180 school staff.
Educate over 2,500 children in more than 60 schools to raise
awareness, fight the stigma and keep young people with epilepsy safe.
Provide a support group and events for over 100 parents to receive
training, address their epilepsy concerns and most importantly meet other
parents who can know what they are going through.

3. Why this charity is needed (for example; how many

women in the UK are abused? How many young careers
are there in the UK? How many children die from infected
water in Africa?)
Approximately 600,000 people in the UK have epilepsy which is equivalent
to around 1 in 103 people.
There are at least 40 different seizure types and people may have one or
several different seizure types.
Approximately 60% of people have tonic clonic seizures, 20% complex
partial, 12% mixed tonic clonic and partial, 3% simple partial and less
than 5% absence seizures, myoclonic seizures and other types.
Around 3% of people with epilepsy are photosensitive, which means their
seizures are brought on by flashing lights.
The total number of children aged 4 years and under with epilepsy is
approximately 1 in 509.
The number of children and young people aged 18 years and under with
epilepsy is near 1 in 220.
The numbers of young people who are 25 years and under with epilepsy is
around 112,000.
More than one in five people with epilepsy have learning or intellectual
disabilities.
In the UK 1,150 people died of epilepsy related causes in 2009. In England
and Wales 10% or 11% of those deaths are young adults or children under
the age of 25.
Approximately 42% of the deaths per year are probably or potentially
avoidable.

4. How many people it has helped since being found and

where (infographics)

5. How much money it has raised so far and how much it still

needs (infographics)

6. Information / footage on people / communities it has

helped detailed stories from those who have been
effected
http://www.youngepilepsy.org.uk/for-young-people/share-yourstory/your-stories/

7. Discussions with the organisation about future plans

8. Fund raising events

9. Have celebrities got involved? Why? Are they effected by

this?
10.
All footage you can find that can go into your own
documentary

N/A. (N/A). N/A. Available: http://www.youngepilepsy.org.uk/for-supporters/whereyour-money-goes/. Last accessed 17th Nov 2016.