I could talk all day about Erin, telling you how beautiful, clever, kind, caring, popular, fun loving, annoying and special she was. Due to leave home for university, she was diagnosed with tonic-clonic seizures and put on anti-seizure medication following a nocturnal seizure. I remember the neurologist saying, 'This will just be a minor nuisance in Erin's life'. Five months later she had a second review, when her medication was reduced because Erin was worried about putting on weight and tiredness.
Erin was 19 when she died in her sleep some six weeks after starting University. She was getting used to university life. She was not taking her medication as she should have been; she was missing doses.
I first heard of SUDEP when it appeared on Erin's death certificate. The hospital had not contacted us and we had to search the Internet for death in epilepsy and discover what SUDEP was. We rang the neurologist and told him we were coming to see him. When asked, he explained that his practice was not to routinely inform about SUDEP because he did not want to cause distress and there was nothing Erin could have done.
We believed that Erin would have taken her condition more seriously, taken her medication properly and we could have supported her. At least she would have had the chance to. The risk might have been remote but it was the most serious risk she faced. Scottish national guidelines recommended SUDEP as essential information for people with epilepsy and in 2002 a judge determined in the Findlay Fatal Accident Inquiry that people with epilepsy should be told, unless there was a good reason not to.
Driven by the attitude of the neurologist, I decided to challenge. A complaint to the hospital was dismissed. I contacted the Scottish Public Services Ombudsman. Two years later the Ombudsman's final report concluded that as there was no record of the decision not to tell Erin, and because no written Information was provided, the hospital had failed to provide patient-centred care. She wrote to the government urgently recommending research into communication about SUDEP - this is now being funded.
Independently, the Scottish Government ordered a Fatal Accident Inquiry (FAI) into Erin's death and into the death of another young woman, Christina, who also died from SUDEP. The two Inquiries, which have been joined together, have involved evidence taking over many months and will report during 2011.
I feel we have achieved what we set out to do; the hospital has recruited a specialist nurse and is providing written information. Regardless of the outcome of the FAI, we have been listened to and the arguments have been carefully considered by independent professionals. This has taken years now and at great personal cost to our family. It was not a matter of courage or bravery, it was about the need to make sense of what happened. As time passed I also came to appreciate that, in her name, changes could come about that would mean that Erin did not die for nothing.
Global Conversation 2011