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Children and young people epilepsy pilot project

Calling all children and young people with epilepsy (and parents of children with epilepsy), who are registered with a Luton GP!

We would love you to take part in a pilot project.

The pilot project aims to see whether using an online platform called Patients Know Best (PKB) will help to improve the care you or your child receives, and whether it could reduce the likelihood of being admitted to hospital with a seizure.

Patients Know Best is a simple, straightforward online platform which you can access anywhere in the world, from your smartphone or computer.

It provides one central place where you can:

  • record information about seizures (when and where they occur, what type, how long they last for, any possible triggers, etc)
  • upload seizure videos for clinicians to see
  • input medical history and ‘All About Me’ information
  • message the epilepsy team directly for advice and answers to non-urgent questions
  • store useful resources such as factsheets

You can give access to your PKB record to your consultant, epilepsy team and other health professionals, as well as trusted family members, friends, or carers, so they can have a clear picture of your seizure information.

If you or your child are admitted to hospital, you can share PKB with the medical staff, to save having to repeat medical history information to different clinicians.

We have more than 60 patients or parents already signed up, and we have had some positive early responses:

One parent said their first ever family holiday was saved by PKB when their young child had a seizure that wasn’t their usual type. They were able to message their epilepsy nurses Liz and Mary through PKB to ask for advice. Liz and Mary reassured them, meaning they didn’t have to take their chid to an unfamiliar hospital, or cut their holiday short and come home. They could carry on enjoying their holiday and making memories as a family.

Another parent said how nice it was to upload a video of her child playing happily on the trampoline, so the Consultant could see her child through her eyes – as a happy and loving child – rather than only seeing her when she was unwell.

We really hope you will take part. If you would like to take part in the pilot, please get in touch with Liz Stevens (Childrens Epilepsy Specialist Nurse) or Mary Hunt (Assistant Practitioner) by phoning 0333 4050079 or email [email protected]. You must be registered with a Luton GP to take part.

If you are not a regular computer user and think you might need some one-to-one support to get started using the PKB platform, a member of our team can offer an individual introductory session. This will usually last approximately 1 hour and can take place at a time most convenient for you. It could take place over the phone, on a video call, at your home, or at another agreed location.

If you do not have a smartphone or computer at home but would still like to take part in the pilot, please contact Usha Panchal (Project Lead) on 07789935728 and we may be able to offer some advice.
If you have any questions about the pilot, please contact Usha Panchal on 07789935728.