Children’s SUDEP & Seizure Safety Checklist
Children’s SUDEP & Seizure Safety Checklist
NEW: The Children’s SUDEP and Seizure Safety Checklist
Working with Cornwall Partnership NHS Foundation Trust and Young Epilepsy, we have created a paediatric version of the SUDEP and Seizure Safety Checklist.
This project grew from our appreciation that clinicians needed a tool to help them tailor their conversations with children, young people and their parents, in order to provide the necessary care, support and assessment of risk.
What we have developed is something that will aid the early identification of epilepsy-related risk factors in children, leading to more effective management and interventions. We also believe this Checklist will lead to better two-way discussions between clinicians and patients / families.
SUDEP Action CEO Sammy Ashby said: “All people with epilepsy have the right to information about risks to help them live as safely as possible – young people are no exception. This new Checklist will allow health professionals to share this important information in a positive way that we hope will make their young patients – and their families – feel like equal partners in their care. It’s about building confidence so they can take positive steps to live well with their epilepsy.”
Register to the SUDEP and Seizure Safety Checklist
Registration allows the Checklist team to ensure the tool is being used by clinicians – who are directly caring for patients with epilepsy.
Registering for the Checklist means it will go directly to clinicians caring for patients with epilepsy.
This will give clinicians / professionals access to lots of free resources and quarterly news updates.
We will make sure you automatically get new Checklist versions as they’re released.
Please note registration is not automatic and the Checklist team (based at SUDEP Action) try to process these as often as possible. We are a small team, so thank you for your patience!
If you have previously registered or think you may not be receiving updates about the Checklist, please contact info@sudep.org
Children’s SUDEP & Seizure Safety Checklist
Many wrongly assume that SUDEP is less common in children than in adults
However, every death is devastating and it is important this is recognised in the language used to discuss mortality risks with younger people with epilepsy and parents of children with the condition.
SUDEP is one of the highest causes of epilepsy-related death for both children and adults, though it is likely recognised figures are underestimated because not all SUDEP deaths are accurately recorded.
By having more discussions in a structured way – that is personal to each patient and based on the latest evidence into SUDEP and epilepsy mortality risks – understanding of risks can be better communicated to keep children and young people safer. Simple actions taken today can go a long way to saving lives.
Professor Rohit Shankar MBE, FRCPsych, who worked on the Paediatric Checklist development project, said: “Until a few years ago it was thought that SUDEP was rarer in children than adults. However, this has now been proven wrong. Children are as much at risk of dying of SUDEP as adults. The impact of each child dying of SUDEP is devastating for families, their carers and their professionals who can be scarred for life, wondering if they could have done anything differently. This Paediatric Checklist brings about the guarantee that the latest evidence is communicated to patients and their families. It also empowers clinicians to know what the cumulative risks are. Most importantly it provides hope by identifying areas of joint working for clinicians and patients and their families to reduce or even prevent a devastating end.”
Children’s SUDEP & Seizure Safety Checklist
Development Group Partners
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Dr Elaine Hughes – Consultant Paediatric Neurologist, Guy’s and St Thomas’ NHS Foundation Trust
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Prof Helen Cross – Prince of Wales’s Chair of Childhood Epilepsy, Great Ormond Street for Children NHS Trust, University College London, Young Epilepsy
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Dr Rohini Rattihalli – Consultant Paediatric Neurologist, Oxford University Hospitals NHS Foundation Trust
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Kirsten McHale – Epilepsy Specialist Nurse, Young Epilepsy
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Lisa O’Brien – Epilepsy specialist Nurse, The Meath
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Dr Colin Dunkley – Consultant Paediatrician and clinical lead for Epilepsy12, Sherwood Forest Hospitals NHS Foundation Trust
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Dr Suresh Pujar – Consultant Paediatric Neurologist, Chair of the British Paediatric Epilepsy Group (BPNA), Great Ormond Street for Children NHS Trust
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Dr Rohit Shankar Consultant in Adult Development Neuropsychiatry (Cornwall Partnership NHS Foundation Trust and Plymouth University Peninsula School of Medicine
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Sammy Ashby, Chief Executive (SUDEP Action)
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Ben Donovan, Special Projects Coordinator (SUDEP Action)
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Kezie Chukwudebelu, Digital Project Manager (SUDEP Action)
Also see
Support children, their families and their health professionals
Why use EpSMon? What users and experts say
SUDEP rates in children higher than previously thought
For one-to-one support after an epilepsy death contact our support team today
We provide the only support line for people bereaved by an epilepsy death and offer access to qualified counselling. Our dedicated support team has a special interest in, and understanding of, sudden and traumatic death.
