Epilepsy Society

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Epilepsy Society
Epilepsy Society logo.jpg
Type Charitable organisation
Registration no. 206186
Location
  • Chesham Lane, Chalfont St Peter, Buckinghamshire SL9 0RJ, UK
Website www.epilepsysociety.org.uk
Formerly called
The National Society for Epilepsy

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 (NHNN) and the UCL Institute of Neurology, both located in Queen Square, London.

Services

Epilepsy 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 through a national helpline, regional services and awareness raising programmes.[3]
  • Online forum, Facebook and Twitter
  • 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

Passmore Edwards House, part of Chalfont Centre

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 NHS 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]

Epilepsy Tool Kit App

In 2011 the Epilepsy Society, aided by Citrix, launched the Epilepsy tool kit app, first for iPhones and later for Android. [9][10] The app has various primary functions and abilities, including:[9]

  • Seizure Diary - for sufferers/carers to record seizure details (variety, frequency, length etc)
  • First Aid - providing advice to advise people what to do in the case of someone having a seizure - both before and after. This is heavily designed to reduce some of the actions frequently taken by seizure bystanders which cause additional injuries or unnecessary emergency services action - holding down, inserting items into mouths, early calling of ambulances etc.[3][10]
  • Medication & Reminders - to allow tracking of complex pharmaceutical regimes, both to ensure correct supply of medication and correct timetabling.

Viewpoints regarding the app creation were generally positive, although it has been noted that the bystander advice is less well-designed for point-of-seizure reading.[10]

References

  1. ^ a b c d Chalfont Centre Duncan, JS & G Faulkner. Seizure. 2003. Retrieved 13/04/18
  2. ^ a b Brain Damage Link to Epilepsy BBC News
  3. ^ a b Public "ignorant" about epilepsy BBC News
  4. ^ a b Epilepsy Employment Stigma can be Overcome UCB News, May 2016
  5. ^ Epilepsy Society Increase Valproate awareness ITV News, 26/09/17
  6. ^ Epilepsy Spirit Myths Endure BBC News, May 2003
  7. ^ 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 489607Freely accessible. PMID 8509771. 
  8. ^ a b "The History of Epilepsy Society". Epilepsy Society. Archived from the original on 9 October 2011. Retrieved 7 August 2011. 
  9. ^ a b Youtube Clip of review of ES App BBC World News (via youtube), Sep 2011.
  10. ^ a b c Epilepsy Society & Citrix launch App Computer Weekly, May 2011, Nick Booth, Retrieved 13/04/18.

External links

  • Epilepsy Society website.
  • Entry on the Register of Charities from the Charity Commission for England and Wales.
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