Clare
My beautiful daughter Clare Louise Mackmin (nee Laycock), was just 28 when she died suddenly from SUDEP on 16th May 2017. Our lives changed forever.
Clare was five months pregnant with her first child at the time, a daughter, my granddaughter. Her name was Charlotte. The pain I feel at their loss is not something I would wish on my worst enemy, and it’s with me every single day alongside a question no parent should ever be left with, 'what if?'
They may save a life, or in our case, two lives.
Just nine-year-old when she had her first seizure – and diagnosed with epilepsy at 11 – Clare did everything possible not to let her epilepsy stand in her way. We saw her seizures change from Absences to Tonic Clonic seizures as she got older and the stress of things like exams would mean an increase in them. Still, she pushed on being the bright and vibrant young woman that she was.
Clare loved amateur dramatics and was wonderful in various productions through her teens, taking on lead roles and eventually going on to achieve a drama degree. Due to a fluke mishap with lost paperwork by the college, Clare was actually awarded her graduation certificate a year later than she should have been at Norwich Cathedral, by none other than Stephen Fry. We watched as they had a good chat on the stage, about her studies, her interests and her plans. It’s a happy memory, all the more precious because we don’t have enough of them.
A health conscious person, Clare managed her epilepsy well, always taking her meds and taking care of herself and this continued into her pregnancy. Her epilepsy was well controlled and by the time she fell pregnant, she had been seizure free for eight years. Clare’s medication was increased due to her pregnancy, but we know that she experienced a lot of morning sickness so was losing a lot of the medication she was taking. This was never discussed, never checked on. In fact, this is just one of a catalogue of things that were never discussed. Opportunities missed that we feel could have saved her life.
Only after Clare’s death did I realise the extent to which she did not get the care she needed, deserved, and was entitled to. Even as a child, she never had a single annual review of her epilepsy between the ages of 11 and 18. Clare received no pre-conception counselling as a young woman growing up who may one day face pregnancy with epilepsy. Risk was never discussed. SUDEP was never discussed. We just didn’t know.
We had no idea of the risk to her life and when asking health professionals after her death, why this vital conversation was never had we were told ‘we don’t want to scare people’. How can this be treated so differently to any other condition? We would never say this of someone with cancer or diabetes or asthma. How is it possible that a conversation that could save someone’s life is not mandatory?
If we had known what we know now about SUDEP and risk, I honestly believe Clare and Charlotte could still be here today. I will never know if that knowledge might have saved her life and no family should have to live with the trauma of that question. What if?
Our support of SUDEP Action in Clare’s name is in the hope that we can prevent even one single family having to go through what we go through every day. I will continue to raise awareness and fight for equality and continuity of care that should not be a postcode lottery. Every single person with epilepsy has the right to have an individual care plan for their needs with regular mandatory reviews. Open and transparent conversations about SUDEP and risk management simply must be had, however scary they may seem.
They may save a life, or in our case, two lives.
