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Kids with Epilepsy failed by the education system


7:13am 1st November 2011

Research shows children with epilepsy failed by education system

Youngsters with epilepsy are getting a poor deal from the education system, new research from the charity Young Epilepsy has revealed.

The research, carried out with parents that have children in school with epilepsy, raises questions over the support available to families living with the condition. Of those interviewed, only 40% were aware of staff at their child's school receiving specialist epilepsy training while 51% believe epilepsy has had a "significant" impact on their child's education.

Of those that took part in the research, which was published to coincide with the renaming of the charity, 46% said their children had missed classes while 37% had missed school trips. Bullying was also an issue with 25% of parents saying their children had been bullied because they have the condition.

The research, carried out independently by Ipsos MORI on behalf of the charity, found that only 32% were involved with some kind of support group suggesting there is strong demand for Young Epilepsy's services.

Young Epilepsy Chief Executive David Ford said:

"Our research shows that children and young people with epilepsy are falling behind at school and getting a bad deal from the education system. Epilepsy is a complex condition and accessing good quality health and education services is a constant struggle for many families.

"Parents are also being let down with little support available to them. We are establishing a network of parental support groups that we plan to roll out nationally. As the voice of childhood epilepsy, we want to raise awareness and understanding of the condition and improve access to, and quality of, health and education services for those affected by epilepsy."

Young Epilepsy Ambassador Dai Greene is a Commonwealth, European and World Champion 400 metre hurdler. Dai was diagnosed with epilepsy at 17 and hasn't let the condition get in the way of his career. Dai said:

"I didn't know too much about epilepsy until my own diagnosis. I think there is a lack of general understanding about epilepsy and believe more could be done in terms of education, in order to make people more aware of the condition.

"Young Epilepsy does important work to help children and young people and so I'm delighted to support the charity and show that with the right support, epilepsy does not have to be a barrier to success."

Young Epilepsy is the new name of the National Centre for Young People with Epilepsy, the only UK-wide charity exclusively supporting the 112,000 children and young people under 25 years of age with epilepsy and their families. Young Epilepsy is a leading provider of specialist education and health services to those most severely affected by epilepsy and related conditions.

The charity offers support and information for parents, carers and young people and provides epilepsy training for health, social care and education professionals and also schools.

Young Epilepsy's research programme facilitates national and international research collaboration into the treatment, care and support of children with epilepsy.

For more information about Young Epilepsy's work, click here If you need more information about the condition then contact the Young Epilepsy Helpline on 01342 831 342 or email helpline@youngepilepsy.org.uk.

Epilepsy fact file:

1.    Epilepsy is a tendency to have recurrent seizures. These are caused by a sudden burst of excess electrical activity in the brain, which results in messages to the rest of the body becoming confused.

2.   There are around 112,000 people across the UK aged 25 or younger with epilepsy and it is the most common serious childhood neurological condition.  Around one in ten of these individuals will suffer from severe communication, learning or behaviour problems due to their epilepsy.

3. Young Epilepsy is a national charity for children and young people aged 5 to 25 with epilepsy and other neurological conditions. Young Epilepsy works in partnership with Great Ormond Street Hospital for Children NHS Trust and the University College London's Institute of Child Health. It campaigns for improved epilepsy services for children and young people through its Champions for Childhood Epilepsy Campaign.

4. Young Epilepsy's headquarters in Lingfield, Surrey includes residential and day provision at St Piers School and Further Education College. Also on the site is the award winning Neville Childhood Epilepsy Centre, which hosts a range of diagnostic, assessment and rehabilitation services, along with the Childhood Epilepsy Information Service (helpline 01342 831342 Mon-Fri 9am-1pm) and a SureStart Children's Centre for all local families.

5. Young Epilepsy also provides a range of epilepsy training for schools plus health, medical and social care professionals. Further information about training can be found on its website. 

5.  Ipsos Mori conducted a total of 201 interviews with parents who have children with epilepsy who are in school. All interviews were undertaken via Ipsos MORI's online panel of British consumers between 16 September and 12 October 2011.

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