SUDEP Action services recognised as best practice in new Epilepsy Toolkit

Today (13 February), RightCare has published a new Epilepsy Toolkit which will support health teams and service providers to better understand priorities in epilepsy care and key actions to take to improve outcomes and quality of life for those with the condition.

SUDEP Action, alongside representatives from Young Epilepsy, Epilepsy Action and clinical experts from across the country have been involved in creating this toolkit with NHS RightCare.

The Toolkit dedicates a whole section to ‘taking a risk management approach to [epilepsy] mortality’ – highlighting the importance of understanding and taking action against epilepsy deaths to local and national health services and clinicians; some of which may be unaware that epilepsy can be fatal.

SUDEP Action’s core services have been recognised as best practice examples for ‘taking a risk management approach to mortality’, including our free:

• SUDEP & Seizure Safety Checklist for clinicians to discuss and review epilepsy risks with their patients so potentially life-saving interventions can happen
• EpSMon app, helping people with epilepsy to quickly monitor any changes to their condition and wellbeing in-between appointments
• Epilepsy Deaths Register, helping learn vital lessons from information shared on epilepsy deaths by involving the bereaved in research
• Specialist support and advocacy service for anyone bereaved by epilepsy; early signposting to the only UK epilepsy bereavement service can provide urgent help with coroners/inquest, and free counselling and support
• Information and advice for those living with epilepsy, their families, carers, clinicians and for the bereaved

Samantha Ashby (Deputy Chief Executive) who represented SUDEP Action and their bereaved supporters in the creation of the Toolkit commented,

“SUDEP Action recognises first-hand the importance of the core to this toolkit - taking a risk management approach to mortality. The best practice examples highlighted in this toolkit, show significant potential for change and many opportunities for local services address the inequalities and variation facing their epilepsy community; helping people with epilepsy to live well, for longer. We hope the publication and use of this toolkit will provide support to make this possible, so that future lives will be saved.”

Why is the Toolkit needed?

In England, people living with epilepsy and the systems supporting them are experiencing challenges, including high misdiagnosis rates; inaccurate epilepsy population estimates; increasing epilepsy deaths, and a lack of strategies and access to services that could reduce unnecessary emergency care. There is also significant variation in epilepsy services depending on where you live.

With at least 87 people diagnosed with epilepsy every day, and 21 epilepsy deaths each week in the UK (nearly half of which are thought to be avoidable), the RightCare Epilepsy Toolkit has been developed to highlight the need to local healthcare providers to do all they can to support people with epilepsy, despite it not being a national NHS priority.

By creating a toolkit looking specifically at the challenges and opportunities for epilepsy care, it helps local healthcare providers to review their current epilepsy care and services and to find opportunities for improvement, which in some cases could save lives and better support those bereaved by epilepsy in the devastating aftermath of their loved one’s death.

Sammy Ashby continued, “People with epilepsy are at increased risk of dying suddenly and prematurely – causing significant grief and trauma throughout communities. Nearly half of these unexpected deaths are potentially avoidable, with improved access to information, services and better risk management. It is wonderful that NHS RightCare recognise how vital it is for regular risk communication, as well as signposting people to specialist services after a death has happened.”

Now the Toolkit has launched nationwide, the next step is to make sure those providing existing or commissioning new epilepsy services know it exists, and to support them in using the wealth of information in the toolkit to improve and hopefully save lives in their local area.

If you’d be interested in supporting SUDEP Action with this work, we’d love to hear from you: [email protected]