Lucy

Hear Her Voice: Reflections from me A couple of weeks ago I attended Hear Her Voice, an event hosted by Young Epilepsy for International Women’s Day. It brought together mothers, daughters, clinicians and young people to shine a light on what it truly means to live with epilepsy. For me, it hit differently. As our followers know, I’m a mum to a five-year-old with epilepsy, cerebral palsy and autism. Her seizures are uncontrolled — we typically track between 11 and 15 each week, and those are...

The Children’s Wellbeing and Schools Bill has been presented as a major reform to improve safeguarding, strengthen attendance, and enhance support for vulnerable pupils. However, for families of children with complex additional needs — including those with Education, Health and Care (EHC) plans, disabilities, chronic illnesses, or mental-health challenges — the Bill introduces provisions that could create significant new risks, barriers, and unintended harm. Based on a detailed review of the...

What it looks like before you have a diagnosis, and why trusting your instincts matters. Before we had words for it We finally met with Penelope’s neurologist last week. Our pre-Christmas appointment had been cancelled due to sickness and rescheduled for January. Even the snow tried to stop us attending, but we insisted on a face-to-face appointment. It felt important — not just clinically, but personally — to meet the doctor who would be responsible for our daughter’s care. From a parenting...