SUDEP Action

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SUDEP Action safety tools flagged in international Neurology Journal as interventions which benefit the care of people with epilepsy

“There is nothing so tragic as a life needlessly lost.”

The opening of the latest article on SUDEP in Practical Neurology, a peer-reviewed journal read by health professionals across the world, provides a poignant reminder of the need to tackle the number of epilepsy deaths that happen each year, and the devastation that occurs when lives are not saved. 

The article is authored by the BMJ Award Neurology Team of the Year 2016 (Cornwall Royal Hospital; Cornwall Partnership NHS Foundation Trust; Plymouth University and SUDEP Action). The team researched and developed practical tools to support doctors and patients to address lessons learnt from local deaths. Their research on local deaths highlighted that in 90% of SUDEP deaths, there was deteriorating seizure control in the 3-6 months before a death, and that most had not had an epilepsy review for at least a year.

A quote from the article reads: “There is tacit avoidance of discussing the risk of death both in primary and secondary care, while the patient organisations and SUDEP Action (formerly Epilepsy Bereaved) vocally support the patients’ view that such risks should be made transparent”.

The researchers argue that a person-centred, shared-care approach which includes discussion of SUDEP, can enable patients to take action to anticipate and prevent crisis. It also enables professionals to identify patients who might benefit from proven treatments or strategies to tackle specific risks; such as tackling seizures with medication, surgery or VNS, or addressing depression or substance abuse with community based interventions. Women with epilepsy were flagged as needing special consideration because of the complexity of communicating and balancing risks to the unborn child (due to potential medication side effects) and the risk of fatality to both mother and child. 

Providing information on risk at an early stage, and revisiting in future, was flagged as important as it can empower people with epilepsy to make informed decisions about their care, helping them be an active part in the management of their condition.

Jane Hanna, CEO SUDEP Action and article co-author said:
Practical Neurology is a fantastic journal to show doctors that simple, practical tools exists now to assist them in providing person-centred care, in the form of the SUDEP and Seizure Checklist and EpSMon. The research and development of the tools have shown the benefits of a positive and structured approach to sharing of knowledge. They support health professionals and patients to talk about individualised risk positively, sensitively and openly; a process which already happens in other long-term conditions such as asthma and diabetes.”  

The article notes, it will be many years before an ideal drug that stops all seizures without side-effects is found, or any other intervention to prevent SUDEP is proven. Regarding seizure detection devices, the article refers to a recent review in the Seizure Journal, which showed ‘no suitable robust seizure detection and safety technology’ is currently available, though some are ‘clearly promising’. This is an area which concerns many people with epilepsy and their families, and where continued research will in future provide evidence to prove the efficacy of devices already commercially available, giving peace of mind to those who use them. 

The group that developed the SUDEP and Seizure Safety Checklist and EpSMon are now observing a fall in SUDEP deaths from 6 to 1-2 a year in adults with epilepsy, and from 4/5 a year to none in high risk patients with epilepsy and learning disability.  Patients and clinicians receive the intervention positively, and the tools are used to flag up that an intervention or a modification of behaviour is needed.
The article closes by summarising that while further long-term studies into the impact and outcomes of tools such as checklists and apps are needed; using such initiatives raises the profile of epilepsy and epilepsy mortality among health professionals and people with epilepsy. This enhances awareness by encouraging all involved to be responsible for epilepsy management; something that could potentially save lives.

Read more about how our safety tools are helping Health Professionals and people with epilepsy manage risk. 

For further information on epilepsy safety devices please see here