Harnessing the power of digital and telehealth technology to diagnose and treat patients closer to home is one of the pillars of Cambridge Children’s Hospital. Little Cain, from Peterborough, is already benefitting from this.
Cain's mum, Stacey Zajac, spoke to us about their journey to diagnosis using video technology 'vCreate'
Link: https://youtu.be/B_7yBS5Iq3w
Cain Parson's ‘funny turns’ started when he was just 8 months old. His mum, Stacey Zajac, said they would range from him dropping to the floor and being still, to him shaking, and sometimes going floppy.
Stacey said: “We started taking him to hospital, but it was hard to describe to the doctors, because often by the time we got there Cain seemed fine. But it was scary because they were happening in the car, out and about, and in his sleep.”
One of Cain's biggest barriers to getting a diagnosis was being unable to show the doctors exactly what his episodes looked like.
After around 200 seizures, his parents were able to capture one of his more severe seizures on camera, utilising video technology called vCreate to help get him a diagnosis.
It was life changing, I feel so reassured. If it wasn’t for that video we wouldn’t have a diagnosis.
Stacey Zajac, Cain's mum
Stacey is now one of hundreds of parents across the East of England using vCreate, which enables parents to securely send videos of potential seizures straight to their local consultant to be checked.
After analysing the videos Stacey captured, doctors in Peterborough were able to put Cain on medication while they investigated further.
He was diagnosed with a mutation of the SCN8A gene, which was causing the epilepsy.
Cambridge Children’s Hospital is being developed with the ethos of keeping children ‘closer to home’, getting them back to their homes and loved ones as quickly as possible.
Video consultations and virtual monitoring are being seamlessly integrated into treatment plans.
Observational visits, previously requiring children to travel into a hospital, can be done remotely.
For families like Cain’s, it means getting a quicker diagnosis, less travel to hospital, less time off work for mum and dad, and less impact on siblings, like Cain’s two sisters.
When we didn’t have vCreate, we were constantly taking him to hospital. Our whole life stopped.
Stacey, Cains mum
Stacey said: “Dad would stay at home to look after our girls, everything stopped, we weren’t working, the kids didn’t want to go to school.”
She added: “Being able to get information about Cain’s episodes at home has been really beneficial for us, and so has getting care in our hometown.”
It’s care driven locally, irrespective of geography.
Dr Andy Michell, Consultant in Clinical Neurophysiology
Dr Andy Michell, Consultant in Clinical Neurophysiology at Addenbrooke’s Hospital, is leading a programme to set up vCreate at hospitals across the East of England.
He said: “The aspiration of Cambridge Children’s Hospital is to be able to serve everyone across the East of England, so that’s people who live a long way away from Cambridge. And so, with vCreate and the innovation we’ve done on diagnostics, that really enables people to be potentially diagnosed in their own home, and they’ll be diagnosed by the local team."
Professor Isobel Heyman, one of our mental health leads, says: “Children with long term health conditions, especially conditions involving the nervous system such as epilepsy, have increased emotional and behavioural difficulties."
Cambridge Children’s Hospital will be unique in the fact that it will integrate physical and mental care together under one roof, while supporting the whole family.
These children, and their carers and siblings, all need wellbeing and psychological support.
Professor Isobel Heyman, Mental Health Co-Lead
Cain’s mum, Stacey says: “Cain’s condition has impacted the whole family, his siblings, and us as parents.”
She added: “While Cain is only two, we have no idea how this could affect his mental health in the long-term. It’s something that we need to consider going forward, so I’m glad it’s going to be a big part of the new children’s hospital.”
Find out about our vision to revolutionise healthcare for children across the East of England.