In April 2025, my 31-year-old daughter, Elizabeth Holt, tragically passed away from SUDEP (sudden unexplained death in epilepsy). She had been seeking treatment at a hospital under the NHS, and despite having multiple neurology appointments, the risk and existence of SUDEP were never communicated to us. We were completely unaware of this silent threat until it was too late.

After Elizabeth’s passing, when I desperately sought answers from her consultant, I was told that discussing SUDEP is challenging because it can upset patients and families. But I ask, wouldn't you rather confront an uncomfortable truth than face the unbearable pain of losing a loved one? I know I would.

This petition is not just a reflection of my grief but a plea for change. It is essential that every individual and family dealing with epilepsy is informed about SUDEP. Knowing the risks can lead to informed decisions about care and lifestyle adjustments that might prevent future tragedies. Ignorance, in this case, can indeed be deadly.

Let us compel health systems, especially the NHS, to make it mandatory for medical professionals to discuss SUDEP during every epilepsy-related appointment. This structural change in the conversation between patients and healthcare providers will not only raise awareness but potentially save lives.

The statistics show that SUDEP is responsible for over 50% of all sudden deaths in people with epilepsy, and yet, awareness remains low. By integrating discussions about SUDEP into regular neurology appointments, patients and their families can be empowered with knowledge and tools to manage this risk proactively.

Please sign this petition to call for policy change, urging NHS and healthcare authorities to prioritize discussions on SUDEP in epilepsy care. Let’s make sure no other family has to endure this preventable heartache. Together, we can make a difference.