Speaking at our Decade of Difference MedTech Week reception in December, Murray Goulder told the story of how an implantable subcutaneous EEG (SubQ) had completely transformed his life. We sat down with him to discuss his journey with the technology, and the role patients are playing in improving uptake of the device.

Can you explain to us how you came to acquire your EEG and the impact it has had on your life?

I’ve had epilepsy for 28 years. It started when I was 16 with what are known as absence seizures – brief but sudden lapses of consciousness. I was having about six of these a day, and even once had a particularly bad burst of ninety in one weekend. I generally get no warning they’re about to happen so have little time to prepare. I have had slips and trips in my years and almost walked off train platforms three times due to walking autonomously during my absences.

Luckily, I was stopped by kind strangers on all three occasions. Without them I might not be speaking to you today.

I was asked by my neurologist if I would take part in the trial of a new device called a Subcutaneous EEG (SubQ). This tiny device implanted in my head would record all seizure activity, providing essential data to my neurologist that could help him understand how my body was responding to medications. Adjustments can then be made quickly and efficiently so there is a better balance between side effects of medication and the seizures themselves.

Ultimately this tiny implant in my head has increased my confidence and transformed my day-to-day life. I am now down to about 5-6 absence seizures a month, have better control over my epilepsy and have dramatically reduced my contact with the health service.

What role should patients play when it comes to using medical technology? Have your insights and experience been used to improve how the device is used or offered to other patients?

I was an early adopter of the SubQ and now chair a patient advisory group. This is vital for helping clinicians – and those responsible for making decisions about commissioning the device – understand how to get the best out of the technology. There is often resistance to uptake that doesn’t recognise the long-term savings. The potential for this is enormous – covering everything from medication to face to face consultation times and vital bed costs. But ultimately, these patient groups help really convey and understanding of seizures and the desire by patients to better control them.

Image taken from Djurhuus BD, Viana PF, Ahrens E, Nielsen SS, Srinivasan HL, Richardson MP, Homøe P, Hasegawa H, Zarei AA, Gauger PLK and Duun-Henriksen J (2023) Minimally invasive surgery for placement of a subcutaneous EEG implant. Front. Surg. 10:1304343. doi: 10.3389/fsurg.2023.1304343

You attended this year’s Med Tech Week event in parliament focusing on the transformation of the NHS using technology. How do you feel about this potential based on your experience?

The event was amazing and I personally feel that investment in technology is vital for the future. I do not think that we should just rely on medication alone. Side effects can sometimes be worse than the condition and they are incredibly expensive in the long run. I have spent multiple week-long stays in hospital for video telemetry that has captured nothing of use, and at a cost of almost £2,000 a week.

The SubQ captures all this in a real-life situation, almost like an inbuilt diary. Most of my seizures leave me confused and I would rely on others – often my wife – telling me when they were. Sadly, she was diagnosed with leukaemia in March 2024 and has been away from home since receiving treatment. It’s frightening enough but we both know that the SubQ will capture all the vital information that my neurologist needs to continue helping me. It’s these small day to day things that can make a huge difference.

January 2025