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06 June 2016

Epilepsy Society begins heart monitor trial to detect seizures

Epilepsy Society has begun a six-month trial of heart monitor equipment to assess the technology’s usefulness in detecting seizures.

The PulseGuard monitor has been allocated to four residents at the Epilepsy Society in Chalfont St Peter, Buckinghamshire, who have been assessed and found to be most at risk of SUDEP.

What is PulseGuard?

The sensor is worn like a watch on the wrist or ankle of the resident to monitor their heart rate and is linked to an app on an iPad that is fixed to the wall of the resident’s bedroom.  An alarm alerts the Blick nurse call system when the resident’s heart rate either rises above or drops below their personal ‘normal’ heart rate range.

How PulseGuard works

It has been found that heart rate spikes at the start of an epileptic seizure for some people, so a sudden increase in detected heart rate could indicate to care staff the resident is about to have a seizure, whereas if the heart rate drops below the lower threshold, it could indicate the risk of SUDEP.

The PulseGuard technology was created by Adrian and Sue Perry of who run the not-for-profit company, Adris Technologies.  The couple developed the PulseGuard for their own son, Tom, 22, who has seizures in his sleep because of Dravet Syndrome.

Sue Perry described the development: “Adrian is a problem solver.  There are people who say that SUDEP will be what it will be, but we wanted to know we’d done everything for Tom.  We keep a defibrillator and oxygen in the house for him and when the specialist explained the connection between heart rate and seizures and SUDEP, we had this idea.”

"Feel-good factor"

The couple made the technology available for purchase in 2014.  Sue described the effect the technology has had on families who have bought it: “It’s an amazing feel-good factor when we get people contacting us to say ‘we need it, we can’t do without it, you saved our child’s life last night.’”

A £40,000 grant from the Nominet Trust’s Tech Seed Fund has enabled the Perrys to launch their PulseGuard Pro trial at Epilepsy Society to cater for people in residential care.

Adrian Perry on the trial:

Adrian Perry expressed his hopes for what the trial will achieve: “We need the results of the trial to improve the technology and make sure it meets the needs of people.  At the end of the trial we will have built a system that works consistently for people with epilepsy.”

Comment from Epilepsy Society

Epilepsy Society’s head of therapy, Sarah Protheroe said:

“Epilepsy Society is grasping this vital opportunity to discover whether PulseGuard will pick up ‘hard-to-detect’ seizures and therefore bring staff promptly to residents - giving the help and medication needed.

“We are anticipating that we will discover some residents are having more seizures than are currently observed - many seizure types have very few outward signs.

More freedom

“It could give certain residents more freedom as they may not need to be constantly observed and we hope to be able to provide the neurologists with more accurate information regarding frequency, timing and patterns of a person’s seizures, facilitating clinical decisions that improve epilepsy control.

“Adris Technologies will be able to adjust their product to make it even more user friendly following feedback from the Epilepsy Society staff, residents and carers during and after the project.

“The choice of where and with whom to try the PulseGuard has been based on multiple factors. I am most grateful to the staff and residents who are supporting this project as it involves significant time and energy. Everyone involved is so fully committed to improving the lives of people with epilepsy.”

 

Epilepsy helpline 

Our confidential helpline is for anyone in the UK affected by epilepsy.

Call: 01494 601 400 (national call rate)
Daytime: Monday, Tuesday, Thursday and Friday 9am - 4pm
Extended hours: Wednesday: 9am - 8pm
Email: fromthehelpline@epilepsysociety.org.uk

Read more about the helpline here

 

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