New project looks to prevent epilepsy deaths in people with a learning disability & autistic people
The My Life with Epilepsy project led by SUDEP Action, will 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. These resources will also help families and carers to understand and manage the risks linked with epilepsy deaths.
Leading epilepsy and learning disability experts are involved in the project, including Sally Ferguson and Jodie Bradley of Speakup, Professor Rohit Shankar MBE (Cornwall Partnership NHS Foundation Trust & University of Plymouth Peninsula School of Medicine) and Professor Dan Goodley (Sheffield University). The project is possible thanks to a grant from NHS England and NHS Improvement.
Sammy Ashby, SUDEP Action Deputy Chief Executive, said: “This project will help many people to improve their risk awareness, seizure control and general wellbeing, which we know reduces risk of SUDEP and premature death. Currently, 21 people with epilepsy die each week in the UK and at least 42% of these deaths are known to be potentially avoidable. 22% of people with a learning disability, and 12% of autistic people live with epilepsy. We want to do all we can with this project to help those with a learning disability, autistic people who live with epilepsy, and their families and carers reduce their risks to live safe and happy lives.”
Collaboration with Speakup
SUDEP Action is teaming up on this project with Speakup, to refresh and improve existing risk information and give individuals, parents and carers vital tools and information to better manage their epilepsy. Speakup is a self-advocacy group run by and for people with learning disabilities and autistic people. The project will draw on the knowledge and insights of those with ‘lived experiences’ to add depth to the resources created.
Jodie Bradley, who is an Expert by Experience and Trainer & Speaker at Speakup said: “The My Life with Epilepsy work is important as it helps people who have epilepsy, or friends and family with epilepsy, understand how to live their lives to the full. People have lost their lives to epilepsy and with this work, we can help people live healthy lives with the condition.”
The toolkit of resources created will be tested in one or two local healthcare settings to get feedback. The toolkit will support people to better understand and reduce epilepsy risks and help highlight the importance of their epilepsy being a central part of their care planning and health reviews.
As part of this project, Speakup will also help review SUDEP Action’s EpSMon app, to see how the app can be improved and give extra support to users who have a learning disability or autism. This valuable feedback will help SUDEP Action when designing the next version of EpSMon.
Chris & Mel Heap, whose son Ben died in 2017, are just one of the bereaved families supporting this project and sharing their loved one’s story. They know first-hand how vital this project is for people living with epilepsy, learning disabilities and /or autism: “We miss Ben beyond belief, losing him tore our lives apart. This new project is a fantastic idea, and we only wish our GPs, and neurologist had made us aware of the risk of SUDEP.”
Why this project is happening now
The 2020 Learning Disabilities Mortality Review (LeDeR) report into deaths in people with learning disabilities showed that epilepsy was the sixth most frequently recorded cause of death (in 2019 and 2018), and the second most frequently reported potentially treatable cause of death. The report recommended people with learning disabilities and autistic people who also have epilepsy should:
- have an annual epilepsy review
- maintain a regularly updated care plan,
- receive improved training and support around issues such as emergency/rescue medications.
The report also highlighted SUDEP Action’s SUDEP and Seizure Safety Checklist (for clinicians) and EpSMon app (for people with epilepsy) as existing resources already available as a safety measure for use with people with a learning disability. In February 2020 the NHS Rightcare Epilepsy Toolkit recognised these tools as ‘best practice’ for taking a risk management approach to epilepsy mortality.
A December 2021 independent review into the death of Clive Treacey, who had epilepsy and learning disabilities and died in care in 2017, further recommends these tools be used to better manage and communicate epilepsy risk.
As a result of the above reports, SUDEP Action has been developing this project to help address some of the issues they raise, but since 1995 we have advocated for all people with epilepsy to receive vital risk information and for this to be part of their care plan which is regularly reviewed. This is especially important for people with a learning disability and autistic people who can be at higher risk of death, so we hope this project will help people living with epilepsy to live safer lives, with their epilepsy risks managed as well as possible.
For more details about the project: https://sudep.org/my-life-epilepsy
Find out more: