Necessity Drives Invention
“We are lucky here to have a great team, mostly skilled friends & family who have invested both money, time & energy into creating EpiView”
-Jason Hubbard – Founder
EpiView did not come about because a few friends decided to make money from people who have epilepsy, it came about because it was needed. Care seemed unobtainable and in some cases what you received simply wasn’t good enough.
You can read about the rest of the team in our blog, they’re all great at what they do & they’re all brought together around our founder Jason’s son.
How Epiview got started as an epilepsy monitoring company
Now Jason is a “TECHIE” we mean with a capital “TECH” he is also a Dad & husband. Jasons son developed Epilepsy, he has Tonic-Clonic seizures & needs monitoring during the night to ensure he does not harm himself during those tonic-clonic seizures.
In order to get help for his son & the family, Jason needed to provide evidence to his local authority that his son suffered from such severe seizures that a waking nights carer was needed to provide well-needed respite care, a few nights per week.
We did mention Jason is a techie?
So out comes one of those new digital camera things, set up to record throughout the whole night & captures enough evidence for the local authority to grant direct payments to Jason so he could hire waking nights carers for his son!
Success!
Well, yes but only to a degree. Jason’s local authority had provided funding and waking nights carers had been hired and that provided some respite for the family but the normal monitoring method was to simply peer into his son’s pitch black bedroom every 30 minutes but a long seizure lasts 5 minutes and there were still significant times of acute risk.
Of course, technology was the solution!
Combining an infrared camera, with a monitor meant the carer could monitor continuously without having to enter the darkened room & significantly reduced the acute risk but the risks were still too high for Jason to accept.
The Quality of care was hit & miss, some carers were great but on some occasions agency staff arrived who were frankly unfit to work & had to be sent away, some didn’t arrive at all and some fell asleep partway through the night.
The Ball Starts Rolling!
“To re-cap, Jason can now see in the dark, even record throughout the night but still has to watch the monitor ALL night.”
In fact, the ball started rolling with the question “Who else is having these same problems?”
- With the wider introduction of broadband in the UK another opportunity came.
- Instead of one carer watching one person, what about keeping an eye on a few people using a shared monitor?
- The waking night staff don’t always administer medication if needed or call an ambulance
- In fact, for most seizures, Jason was woken to provide additional support!
- Extra support could be provided remotely by an epilepsy nurse!
- There could be power cuts, broadband failures, security risks, data breaches, hackers but still, if you could get the infrastructure together there could be something in it!
- What else could be included? A recording of all seizures for clinicians to review?, diary systems?, a smartwatch for recording heart rate & temperature?, monitoring for SUDEP? ……… the idea was coming together!
A few conversations brought the ideas & practicalities together, you can read a bit more about these in the rest of the blog, we don’t want to steal anyone’s thunder!
Our solution nighttime epilepsy monitoring for tonic-clonic
See how the office shaped up!
Why Epiview for Epilepsy Monitoring – What’s in a name?
EpiView wasn’t the first or starting name for the company. In fact, there were rather too many!
In the end, we chose something that reflected the primary objective of the company, to provide night time monitoring for people with epilepsy & their families.
Why not a charity?
If we were a charity or a “not for profit” organisation we would have to spend a significant amount of time raising money & creating the necessary infrastructure to operate. By being a company we were able to attract investors who paid for the data centre, the office and everything else we needed – that got us in a position to offer a service at least 2 years sooner than if we had needed to raise the money via donations. This also means that we can focus our energy on being flexible & developing new solutions & innovations
Do you have to charge an hourly rate?
Yes, we do.
We have to pay the bills like everyone else but it allows us to offer great value for money & be extremely flexible.
In our research, we found most other monitors were subscription-based & frankly deliver too many false positive alarms.
We have compiled some links to apply for direct funding from your local authority in England
With devolved assemblies in Wales, Scotland & Northern Ireland each have a different process we are working on getting this information together as well.
Once you sign up with us you can add extra hours if you need to & even take us on holiday if you ensure there is an adequate internet connection!
Explore our blog to find out more about what we are doing!
Follow us on Social Media for more updates. The more you can help to share our news the more we can concentrate on providing even more enhanced services.
Thanks for reading so far! The journey is far from over but we have made a great start!
-Jason & The Team
How does our nighttime tonic-clonic seizure monitoring work?
