Further Information


This quality standard covers diagnosing and managing epilepsies in children, young people and adults. It describes high-quality care in priority areas for improvement. In December 2023, this quality standard was updated and replaced the existing quality standards on epilepsy in adults (QS26) and epilepsy in children and young people (QS27), published in 2013. The topics were identified for update following the review of quality standards. We were involved in the consultation process and contributed to the statements for review.

Jon Shaw Foundation is looking forward to officially supporting this Standard and fulfilling our role with N.I.C.E as a supporting organisation.

Find out more about SUDEP

Watch this  YouTube video to find out about SUDEP (Sudden Unexpected Death in Epilepsy).

Investigating SUDEP through brain tissue.

This is an interesting article from epilepsy society UK.

Neuroimaging allows us to look deep inside the brain to map both its structure and, in some cases, to locate the focal point of seizures. Whole genome sequencing is helping us unravel the genetic contribution to epilepsy and how our DNA may be crucial in determining our susceptibility to seizures.

But neuroimaging and genomics still only tell us part of the story. There is still much that we do not know and that is where studies using brain tissue are critical to advance our knowledge of epilepsy at a cellular level.

Dr Joan Liu gives an insight into Epilepsy Society’s Brain and Tissue Bank at UCL:

Find out more about equipment

There are so many different monitors and alarms available for people living with epilepsy. We have added a link to epilepsy.org who have produced comprehensive information on their website. Take a look to find which works best for you

New Partnership with UK’s Largest Provider

We’ve partnered with Epilepsy Alarms, the UK’s largest provider of epilepsy monitoring devices that are designed to give peace of mind to young people with epilepsy and their families. Take a look at the wide range of devices they have to offer and then get in touch with us to discuss whether we can help with funding your purchase.



 Presenting Jon Shaw Foundation and SUDEP

We put this presentation together to introduce the topic of SUDEP to the wider audience, as per our third charitable purpose. We have also  adapted  a version for presenting to primary schools. 

Invesigating the underlying mechanisms of SUDEP…

Epileptic seizures can stop a person’s breathing or the heart from beating. This is believed to be the basis of sudden unexpected death in epilepsy (SUDEP). SUDEP is both untreatable and unpredictable, and accounts for approximately 600 deaths each year in the UK.

The underlying mechanisms of cardiorespiratory arrest is unknown, but increasing evidence implicates a type of brain cell – the microglia – in this process. However, it is not clear whether these cells cause or prevent seizures associated with SUDEP.

The StudyProfessor Dale and Dr Bhandare at the University of Warwick are using highly advanced head mounted mini-cameras to image cardiorespiratory brainstem neurons in animal models of epilepsy. Their expertise will allow them to address the role of microglia in SUDEP by imaging cardiorespiratory neurons, manipulating microglia and simultaneously measuring epileptic seizures. They hope to be able to prevent the failure of cardiorespiratory neuronal networks during seizures through altering microglial activity.

SignificanceThe findings will establish the functional changes in specific cardiorespiratory cells in response to acute seizures, and how their role changes during the development of chronic epilepsy. This project will demonstrate the importance of microglia in regulating cardiorespiratory function in epilepsy, and will increase understanding of the mechanisms underlying SUDEP. The findings of this study could also provide biomarker tests for people with epilepsy who are at a higher risk of SUDEP. The knowledge gained in this project may lead to a potential therapeutic intervention for SUDEP based around an existing drug known to affect microglia (minocycline)

A Guide for Schools…

Young Epilepsy have tweeted a guide for schools to support young people with epilepsy. Click the button below to view it.

Further Information on Epilepsy for Young People…

The Epilepsy Space is for 16-25 year olds to help you manage your epilepsy. It was created with young people. You can find information about, medical issues, independance, family and relationships, emotions and wellbeing, sex, hormones and parenthood