Last month Alison, The Lily Foundation’s Head of Research, was delighted to pack her suitcase and head over to Budapest to represent the charity at a 3-day global epilepsy best practice workshop.
Our invitation to attend the International Consensus Workshop on the Management of Seizures in Patients with Mitochondrial Diseases was especially exciting because we know through our mito patients and families that there’s a pressing need to develop epilepsy best practice guidelines.
Seizures can be a common neurological manifestation in mitochondrial disease, and are often poorly controlled. Indeed, some anti-seizure medications may even impact negatively on mitochondrial function. At present there’s nothing published to help guide professionals dealing with epilepsy in cases of mito, and care can be inconsistent, unsatisfactory and, at times, non-existent.
As we endeavour to represent the patient voice wherever possible, we surveyed a snapshot of our community who experience seizures as part of their mito, and the results were central to the findings Alison presented at the workshop. In putting forward the case for uniform best practice guidelines across mito epilepsy on a global scale, she quoted a number of stats directly from our survey, so it’s safe to say that Lily really did represent our patients’ opinions.
A high percentage of those we surveyed felt frustrated with the care they received in relation to their mito seizures, with a massive 83% feeling that there were gaps in knowledge from doctors in how to best manage them. And over half expressed the opinion that both local and specialist teams, as well as patients, would benefit from clearer guidance.
The fact that we were invited to share the patient view at such an important meeting really shows the value of the patient voice in directing care guidelines. And the professionals kept referring back to these patient views throughout the rest of the meeting, and used them to guide their discussions, a huge step in the right direction for everyone within the mito community.
Having established that at present individuals with mito have unique considerations when it comes to the selection and use of anti-seizure meds, the intention is to develop and publish a set of guidelines by the end of 2023. However, developing a consensus on safe anti-seizure medications for individuals with mito involves carefully evaluating all available evidence, expert opinion and clinical experience, a process that typically involves collaboration between healthcare professionals including neurologists, mito specialists and patient organisations.
The workshop was an initiative of the mito European Reference Network – that’s a working group we’re a member of focused on harmonising patient care in its member countries by setting up care guidelines and providing training opportunities.
Lily are proud to work with international clinical experts to help develop these consensus guidelines that will aid healthcare providers in making informed decisions and improve the management of seizures in those suffering from mitochondrial disease. And we’re just as proud that the patient voice is front and centre in influencing these developments.