The Epilepsy Society (formerly known as the National Society for Epilepsy) is the largest medical charity in the field of epilepsy in the United Kingdom, providing services for people with epilepsy for over 100 years. Based in Chalfont St Peter, Buckinghamshire, UK, its stated mission is "to enhance the quality of life of people affected by epilepsy by promoting research, education and public awareness and by delivering specialist medical care and support services." The Epilepsy Society has close partnerships with the National Hospital for Neurology and Neurosurgery and the UCL Institute of Neurology, both located in Queen Square, London.
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| Type | Charitable organisation |
|---|---|
| Registration no. | 206186 |
| Location |
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| Website | www |
Formerly called | The National Society for Epilepsy |
Services
editEpilepsy Society is a leading epilepsy medical charity supporting all people affected by epilepsy. The services provided by the charity include:
- Residential care for over 100 adults within care homes at the Chalfont Centre and also in supported living accommodation.[1]
- Diagnosis, assessment and treatment at the Sir William Gowers Centre in Chalfont, Buckinghamshire.[2]
- Research into the causes, diagnosis and treatment of epilepsy. Research focuses on brain imaging and genetics.[2]
- Epilepsy information, a national helpline and awareness raising programmes.[3]
- Campaigning on issues to help all people affected by epilepsy live as full a life as possible[4]
- Epilepsy training to external organisations.[5][6]
- Employment opportunities for people with epilepsy.[1][4]
History
edit
In 1892, a group of physicians from National Hospital for the Paralysed and the Epileptic, together with various philanthropists, founded the National Society for the Employment of Epileptics.[7] The first executive committee of the Society included the notable physicians John Hughlings Jackson, Sir William Gowers, and David Ferrier. The aim was to establish an agricultural colony where people with epilepsy could live and work. A 370-acre (1.5 km2) farm was bought in Chalfont St Peter which at its peak in the 1950s, cared for over 550 people.[1]
A National Health Service treatment unit was established at Chalfont in 1972.[1] Around this time, the Society became known as The National Society for Epilepsy (NSE).[8]
In 1995 a 1.5 tesla MRI scanner was installed - the first dedicated to research in epilepsy. This has now been superseded by a 3 tesla instrument in 2004, which produces higher resolution images. The NSE's MRI Unit is at the forefront of medical imaging research applied to epilepsy. In 2011 the charity changed its name to Epilepsy Society.[8]
Online safety
editIn April 2019, the Epilepsy Society launched a campaign to ban so-called epilepsy trolling, where online trolls target people with epilepsy, sending them flashing images and GIFs with the intent of triggering a seizure.[9]
Following a large-scale attack on people with epilepsy in May 2020, including an 8 year old charity fundraiser named Zach Eagling, the Epilepsy Society titled the campaign "Zach's Law."[10]
After it emerged that no existing legislation specifically criminalised this type of trolling, the Zach's Law campaign was endorsed by the Law Commission (England and Wales),[11] featured on the front cover of the Daily Express[12] and in the Metro (British newspaper).[13]
MPs including Dean Russell,[14] Suzanne Webb,[15] Kim Leadbeater[16] and John Nicolson[17] backed the campaign and met with Zach on several occasions.
On the 5th December 2022, Zach's Law was officially included in the Government's Online Safety Bill and became law in September 2023 when the Bill completed its passage through Parliament.[18] The law will criminalise the deliberate sending of flashing images to a person with epilepsy with the intent of triggering a seizure, and offenders could face up to five years in jail.[19]
References
edit- ^ a b c d Chalfont Centre Duncan, JS & G Faulkner. Seizure. 2003. Retrieved 13/04/18
- ^ a b Brain Damage Link to Epilepsy BBC News
- ^ Public "ignorant" about epilepsy BBC News
- ^ a b Epilepsy Employment Stigma can be Overcome Archived 2016-10-19 at the Wayback Machine UCB News, May 2016
- ^ Epilepsy Society Increase Valproate awareness ITV News, 26/09/17
- ^ Epilepsy Spirit Myths Endure BBC News, May 2003
- ^ Sander, JW; Barclay, J; Shorvon, SD (June 1993). "The neurological founding fathers of the National Society for Epilepsy and of the Chalfont Centre for Epilepsy". Journal of Neurology, Neurosurgery, and Psychiatry. 56 (6): 599–604. doi:10.1136/jnnp.56.6.599. PMC 489607. PMID 8509771.
- ^ a b "The History of Epilepsy Society". Epilepsy Society. Archived from the original on 9 October 2011. Retrieved 7 August 2011.
- ^ "Epilepsy Society calls on Gov to safeguard people with photosensitive epilepsy online | Epilepsy Society". 15 April 2019.
- ^ "Hero Zach completes his 2.6 challenge | Epilepsy Society". 6 July 2020.
- ^ "Law Commission recommends specific offence for malicious tweets sent to trigger seizures | Epilepsy Society". 21 July 2021.
- ^ https://epilepsysociety.org.uk/sites/default/files/2021-02/Daily%20Express%2019%20February%202021.pdf [bare URL PDF]
- ^ "Trolls attack boy with epilepsy, 8, by sending him hundreds of flashing images". 29 May 2020.
- ^ "Dean Russell supports the inclusion of Zach's Law into the Online Safety Bill during final stages". 18 January 2023.
- ^ "Zach's Law". 28 October 2022.
- ^ "Batley and Spen MP Kim Leadbeater welcomes publication of 'Zach's Law' to protect people with epilepsy".
- ^ "x.com".
- ^ "Youngster celebrates new law after campaign against trolls targeting epilepsy". independent.co.uk. 20 September 2023. Retrieved 22 September 2023.
- ^ Hymas, Charles (17 February 2023). "Trolling of epilepsy sufferers with flashing images to be made illegal". The Telegraph.
External links
edit- Epilepsy Society website.
- Entry on the Register of Charities Archived 2009-01-27 at the Wayback Machine from the Charity Commission for England and Wales.
- Lost Hospitals of London, History of Chalfont St. Peter's epileptic colony