Brain Buddy UK
Brain Buddy UK is a patient self-help group that brings together people with a lived experience of epilepsy surgery.
Brain Buddy: talks and events
Brain Buddy UK is a patient self-help group that brings together people with a lived experience of epilepsy surgery.
Brain Buddy UK was established in 2017 by Lisa Upton and Sarah Bullock-Chase. Lisa and Sarah had epilepsy surgery at the National Hospital for Neurology & Neurosurgery.
Lisa Upton: “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 UK to be a support and advice 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 UK 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: “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 UK meetings also provide the epilepsy team with an opportunity to ask patients questions.
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."
UCLH Patient Information Leaflets
Brain Buddy help with UCLH’s patient information leaflets about epilepsy surgery. The leaflets are short guides for patients and families with essential information about treatments. They are available in hardcopy and online on the UCLH website.
To keep them up to date, the leaflets are reviewed by the epilepsy team every 2 years. When new treatments become available, an entirely new leaflet are needed. In both cases, the epilepsy team reach out to patients, families and carers.
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.
- Guide for Patients Considering Epilepsy Surgery
- Guide for Epilepsy Patients Considering Implantation of an EASEE Device
Prof. John Duncan: “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.”