Brain Buddy UK

Brain Buddy: background and events 

Brain Buddy UK is a patient self-help group established in 2017 by Lisa Upton and Sarah Bullock-Chase, who had epilepsy surgery at the National Hospital for Neurology & Neurosurgery.

It was established to connect people with a lived experience of epilepsy surgery, and the aftermath, with those who are contemplating having surgery, either in the future, or who may already be undergoing investigations to help decide whether this is the right course to take.

Lisa Upton, co-founder: “The idea of brain surgery can be so overwhelming. The medical care we received at the National was amazing. But Sarah and I felt we would have benefited from connecting with people who shared a similar experience. So, we founded Brain Buddy to be a support service for people who have had epilepsy surgery and those who still are deciding if surgery is right for them.” 

After the success of the first Brain Buddy meeting in 2018, a collaboration was formed between patients, neurologists, neurosurgeons and neuropsychologists. Today Brain Buddy UK holds online meetings and in person events throughout the year. The events bring together patients, partners, families and carers to meet and talk about their experiences - good and bad.  

Sarah Bullock-Chase, co-founder: “Members of the National Hospital epilepsy team are there to answer questions. The epilepsy team also talk about the new treatments that are becoming available and research studies that could transform epilepsy surgery. Some people who have attended Brain Buddy UK meetings have volunteered to participate in clinical research that will improve the care of future patients. There is no pressure to volunteer to take part in research.” 

Brain Buddy meetings also provide the epilepsy team with the opportunity to ask patients for their input and ideas.

Prof Matthew Walker: “It is critical that patients are involved in all aspects of clinical care and research. Brain Buddy empowers patients, giving them an opportunity not only to learn in more detail about their journey, but also to tell us what could be improved. Feedback from Brain Buddy is changing the focus and implementation of research designed to improve patient care.”

Prof John Duncan: “The perspective and experience of patients and their families is immensely valuable. In addition to a shared lived experience of epilepsy surgery, the Brain Buddy community give a really useful perspective on our recent ongoing and planned research projects. Brain Buddy provides important insights how to best communicate our work and ideas with the public.”

Please see flyer for further details about Brain Buddy and future talks: 

UCLH Patient Information Leaflets 

Members of the Brain Buddy team and its followers help shape UCLH patient information leaflets about epilepsy surgery and related topics. These short guides for patients, their families and carers provide essential information about treatments in an easily digestible and accessible way.

Patient leaflets are reviewed every 2 years by the Trust and the epilepsy team reach out to patients, families and carers for their input. 

Prof John Duncan: “The subject matter of the leaflets – epilepsy surgery - is complicated. The leaflets also contain a lot of detailed information. This is why patient feedback is vital. We need to ensure the leaflets provide all the information people want and, at the same time, use language that is accessible and easily understood.” 

Recently, Brain Buddy used its social media platforms (especially Instagram) to find volunteers to review an updated leaflet and comment on the guide for a new device called EASEE.  These are available from the Epilepsy pages, UCLH and are available in a printable version.

• Guide for Patients Considering Epilepsy Surgery
• Guide for Epilepsy Patients Considering Implantation of an EASEE Device 

Ms Jane de Tisi: “The epilepsy team is very grateful for everyone who volunteered. Their comments and suggestions have made the UCLH patient information leaflets better and more useful.”