A mother from Peterborough has described new video technology to investigate epilepsy as “life-changing" for her two-year-old son, Cain.
Watch this video to find out more about Cain's story and how vCreate helped him get his diagnosis
Link: https://youtu.be/Avqo5UY5mCA
Cain Parsons started having seizures when he was just 8 months old. He had more than 200 episodes before new video technology helped diagnose his epilepsy.
Consultants at Cambridge University Hospitals NHS Foundation Trust (CUH) have introduced a video service known as vCreate, which allows parents to safely and securely upload videos of potential seizures.
The videos can be viewed remotely by consultants local to the patient, enabling a quicker, more accurate diagnosis, faster time to treatment and less additional travel.
It’s been lifechanging, I feel so reassured now.
Stacey Zajac, Cain's mother
Cain's mother, Stacey Zajac, said: “Some of his seizures are really severe. On some occasions he went completely floppy and stopped breathing which was terrifying.
“He had two hundred seizures before we finally got it on video, and it was that video that got him to his diagnosis, to where we are today.”
Dr Andy Michell, Consultant in Clinical Neurophysiology at Addenbrooke’s Hospital, is leading a programme to set up vCreate across the East of England, thanks to funding from NHS England.
Many hospitals in the region are now using the video technology including Peterborough City Hospital, Ipswich, Colchester, West Suffolk, Norfolk and Norwich, and Princess Alexandria.
Its care driven locally, irrespective of geography. Across all the teams in the East using vCreate, 75% of users have reported a reduction in the time to treat the seizures and reduced additional investigations such as an EEG or brain imaging. It’s already making a real difference to patients at CUH and beyond.
Dr Andy Michell, Consultant in Clinical Neurophysiology, CUH
The collaborative tool allows doctors across different trusts to analyse the footage. Between those trusts, more than 2000 videos have now been uploaded by parents, a huge milestone for the project.
Across the East of England, 610 families have now utilised vCreate.
After analysing the videos Stacey captured, consultants in Peterborough were able to put Cain on some medication to help ease his seizures while they investigated further.
He was diagnosed with a mutation of the SCN8A gene, which was causing the epilepsy.
It’s often very difficult to describe an event, especially because it can be very traumatic for the parents. But we are able to look for the finer details and can often decide what it is there and then by looking at the video.
Dr Andy Michell, Consultant in Clinical Neurophysiology, CUH
Dr Andy Michell added: “If you had a patient in Ipswich or in Peterborough, their local teams could review the footage for their local patients. But if it requires a second opinion, it can easily be shared within the secure cloud.
"It’s not a question of centralizing everything through Cambridge, but providing a service locally, irrespective of your geography, right across the East.”
Data collected so far across the East shows that the video technology has helped prevent nearly one quarter of parents and carers from having to take time off work.
Stacey and Cain were seen by their local epilepsy team at Peterborough City Hospital, which meant treatment closer to home.
There are times when the tests that we use to prove epilepsy don’t give us any meaningful information. We really need to see an event with our own eyes and that can be quite difficult so it allows the parents to be our eyes and then we can see what they’re seeing.
Dr Peter Rose, Peterborough City Hospital
Dr Peter Rose said: “VCreate makes it easier for people to send their videos, it makes it easier for us to store them safely and securely so that we can refer back to them.
Parents can tell consultants whether they’re willing to let them use their video for teaching purposes, so it’s also helpful for teaching other colleagues.
The hope is that by continuing to use vCreate in the East it will:
- Reduce the economic burden of families having to travel to hospital
- Reduce travel time to hospital for patients
- Reduce parents needing to take time off work
- Enable local teams to treat patients within their community
- Enable faster diagnosis and time to treatment
- Reduced hospital resource use: fewer unnecessary clinical visits and investigations
- Empower and reassure patients and families in the comfort of their own home
- Reduce geographic inequality when it comes to treatment
Using digital and telehealth technology to treat patients closer to home is a pillar of the new Cambridge Children’s Hospital.