Helping Children Living with Epilepsy in Luton

In 2020, the Integrated Patient-Controlled Medical Record pilot was launched in order to improve the outcomes for children living with epilepsy in Luton. Epilepsy is the most common long-term condition of childhood and data has shown that people with epilepsy living in poorer areas may be at a three times higher risk of death than those from wealthier areas.

The Children’s Epilepsy Pilot centres around the “Patients Know Best” (PKB) app. PKB holds a record of patient information, including emergency care plans.  It enables carers and young adults to send and receive information, such as uploading videos and documents as well as updating seizure diaries that can be viewed live by health professionals at any time.

The pilot has been hailed a success by patients and their parents/carers, with one parent stating:

“When my child is really poorly and I arrive to the hospital, my mind is not thinking straight, and I can’t remember what happened. I don’t want to come across as rude to the doctors and nurses who are looking after my child, so I just show them the app and that’s it, they know what’s happening…I can just focus on comforting my child.”

With another parent adding:

“I’ve found it a useful tool. My little girl’s epilepsy is always quite unpredictable, she could be fine one minute or she has quite a few seizures and we go into hospital. So to have something that’s on my phone that I can update all the time to show them when I speak to any health professionals, to have everything in one place makes it so much easier to explain”.