New online initiative set to help Luton’s children with epilepsy

An NHS team from Luton is using National Epilepsy Week to push a local pilot aimed at improving the care for children and young people who have epilepsy. 

At the heart of this new initiative is a secure online platform (called Patients Know Best) where information is kept about each child’s epilepsy. Parents can log seizures and details like when and where they happen, how long they last, type of seizure and any possible triggers. The information can then be accessed by the local NHS epilepsy team caring for each child to ensure they get the right advice and care.

Talking about the new service, Usha Panchal, the pilot’s project manager at NHS Luton, said: “If your child has been diagnosed with epilepsy, is registered with a GP in Luton and is being treated currently by the town’s specialist epilepsy nursing team, then we would love them to become part of this innovative pilot scheme.

“The platform is totally secure – only you and the clinical team caring for your child have access to information you record on the Patients Know Best online system. Should you want to, you can also choose to share it with trusted family members, friends, and/or carers if that is in the best interests of your child.”

Talking about the difference that the system can make, Usha continued: “A parent reported that their first ever family holiday had been saved by using Patients Know Best.  Their child experienced a different type of seizure to normal. This would have resulted in a distressing trip to an unfamiliar hospital. They messaged their Luton epilepsy team online and received reassurance enabling them to continue to enjoy their holiday.

“We also had a parent who used the Patients Know Best platform to send a video to her child’s hospital consultant showing her playing happily on the trampoline. She wanted the consultant to see her child through her eyes – as a happy and loving child – rather than only seeing her when she was unwell.”

Reflecting on the initiative, Dr Tekki-Rao – a consultant pediatrician with expertise in epilepsy at the Bedfordshire Hospital NHS Foundation Trust – said: “The Patient Knows Best platform enables us to see what your child is experiencing in between shospital appointments. The more patients who use the system, the better we can evaluate if it helps families to relieve stress, and the quicker we can provide advice when it is needed.”

Patient Knows Best also allows parents to upload videos of their child’s seizures, as well as message the team at any time for advice and guidance – although if it is an emergency, people should always call 999. 

Parents with children diagnosed with epilepsy in Luton can register to take part in the Patients Know Best pilot by contacting the epilepsy nurses at Luton Children’s Community Health Services or Bedfordshire Hospitals NHS Foundation Trust who are looking after them.

For more information about the project please contact Usha Pancha, project lead usha.panchal@nhs.net.