Resources
Resources and collateral that can be used by health and care professionals to facilitate discussions around Epilepsy.
Resources
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Epilepsy
Organisation: NHS
Type: Website
Date published: Last updated September 2020
Description: NHS website giving information about the diagnosis and treatment of epilepsy.
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Ethan's Story - STOMP and STAMP
Organisation: PBS NEC
Type: Film
Date published: June 2022
Description: Ethan’s story about how he’s been able to reduce his anti-epileptic medicine using alternative types of support and is enjoying life a lot more.
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LeDeR Report 2021
Organisation: King's College London
Type: Annual Report
Date published: July 2022
Description: Annual LeDeR report into LeDeR reviews of deaths, produced by the following collaboration: KCL, UCLAN, KStGU
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LeDeR Resources, including Action from learning reports
Organisation: NHS England
Type: Annual Reports and resources
Date published: July 2022
Description: Annual Reports, Policy, Useful Links, and online tool for reporting the death of someone with a learning disability or an autistic person
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My life with Epilepsy
Organisation: SUDEP Action/Speakup
Type: Toolkit and resources
Date published: March 2022
Description: A new project to create a toolkit of epilepsy risk information resources to support people living with a learning disability or autism who have epilepsy to reduce their risks
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NHS England STOMP and STAMP
Organisation: NHS England
Type: Guidance/Resources
Date published:
Description: helps children, young people and adults, with their family, doctor, pharmacist and other organisations involved in their care to consider removing medication, if they no longer feel it is beneficial. It also supports alternatives to medication where appropriate e.g. NHS talking therapies, social prescribing and positive behavioural support.
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Resources for Professsionals: Epilepsy Action
Organisation: Epilepsy Action
Type: Books, booklets, factsheets, and more
Date published: April 2023
Description: Info and resources for epilepsy specialist nurses, GPs and nurses, care home managers and professionals, teachers and school staff, and researchers looking for support with a study
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See Me - Andrew's Story
Organisation: NHS/Mixit Theatre Group
Type: Film
Date published: August 2021
Description: Reasonable Adjustments: Andrew's story is a powerful awareness video, co-produced after a series incident in a hospital, to promote behavioural change around people with a learning disability. It's an important learning resource about reasonable adjustments and not making assumptions about people with a learning disability
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SUDEP and seizure checklist (for clinicians)
Organisation: SUDEP Action
Type: Tool
Date published: April 2023
Description: free evidence based tool supporting Clinicians in discussing risk with people with epilepsy
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SUDEP* Action – My Life with Epilepsy
Organisation: SUDEP Action
Type: Resources
Date published:
Description: My Life with Epilepsy is a project led by SUDEP Action, working with Speakup, Cornwall Partnership NHS Foundation Trust, University of Plymouth's Peninsula School of Medicine, and University of Sheffield’s School of Education. It will be improving and developing information and resources to help people with a learning disability and autistic people to better understand and reduce their epilepsy risks. *Sudden Unexpected Death in Epilepsy.