Patient and Public Involvement and Engagement

PPIE event: “Living with Epilepsy: Insights and Innovations at UCL-UCLH”

On 2 October 2025, the Epilepsy teams at the National hospital for Neurology and Neurosurgery and UCL Queen Square Institute of Neurology hosted an event for people living with epilepsy at the fantastic Art Workers’ Guild, 6 Queen Square.  The event proved hugely popular with more than 100 guests mingling with staff, students and charities supporting those living with epilepsy throughout the day. Please read the first “Queen Square: Living with Epilepsy” newsletter for further details on the event including photographs and a detailed programme with pointers as to further reading!

Epilepsy Registry 

We are creating a "Queen Square: Epilepsy Registry" in 2026 for our patients and their loved ones. This Registry will enable you to record your interest in:

• Receiving our bi-annual newsletter.
• Hearing about where we are seeking people for new clinical drug trials.
• Share details of future public events, such as “Living with Epilepsy” days arranged by the teams at UCL-UCLH, and events arranged by our collaborators that may be of interest to you.
• Reading any new and revised Patient Information Leaflets and providing feedback, on an ad hoc basis.
• Informing us if you are interested in sharing your story of epilepsy surgery, vagal nerve stimulation (VNS) or other epilepsy-related procedures and would like to talk to others in a similar situation. Additionally, this is your way of letting us know if you would like to share your own story of surgery at an event arranged by our patient support group at the National Hospital for Neurology & Neurosurgery, Brain Buddy UK event. 

The Registry will also be a means for us to reach out to you and involve you in helping shape our work in a variety of ways, for example by:

• Inviting you to become a Patient and Public Involvement and Engagement (PPIE) Partner for UCLH. This is for those who have had direct experience of and / or an interest in epilepsy and also for those who do not. This is not the same as taking part in research as a participant. Instead, it is a chance to get involved in the design, management, running, analysis and dissemination of research. We will put you in touch with Principal Investigators / their study teams who are looking for PPIE partners to collaborate with. We will reimburse you for your time and any reasonable expenses (e.g. food, travel) incurred as a result of your involvement. We will also acknowledge you in any published papers arising from the research.

Please click here to register your interest in joining the registry, Epilepsy Registry For those who have already contacted us, we have already noted your details.

In the meantime, for any enquiries, please contact uclh.epilepsyregistry@nhs.net. 

Once the Registry is operational, we will let you know.