How many people does epilepsy kill each year? It's long past time to find out, writes Caitriona Crowe, whose brother died after a seizure last year
A year ago yesterday my brother Michael died from an epileptic seizure in his home in Wexford town. A primary-school teacher, he was off work that day because he was recovering from minor surgery. Sometime during the morning of June 5th he ran a bath. He was bending over it when the seizure hit him. His head fell into the running water, and he drowned. My brother Matthew, who also lives in Wexford, found him the next day, the water still running but now cold. Michael was 46 years old.
My family has forensically and intensely gone over the events of that last day, to try to get closer to him in his final hours. He spoke to a friend on the telephone the previous night, in good form and looking forward to the World Cup match between Ireland and Germany the next day. He was, though, in considerable pain because of an infection in the wound caused by the surgery. This would certainly have made sleep more difficult and put him at risk of a seizure, and it is likely he had a first one early next morning.
After a seizure, he was always confused but determined to continue with his plans. We know he did not go out to buy his usual Guardian, the British newspaper to which he had a particular devotion. He had breakfast, then ran his bath before going to the hospital to have his wound dressed - and a long history of lucky, sometimes miraculous escapes from fatal injury came to an end, to the profound grief of everyone who loved him.
Michael was 18 when his seizures began, due either to being attacked by a gang of youths who hit him on the head, or to a severe infection some time later, or to both. Many people who live with epilepsy have an aura, a sensation that warns them when they are about to have a seizure and that enables them to protect themselves from injury. Michael had no aura. His seizures struck him out of the blue, and he was very often injured.
His illness was controllable up to a point by medication, but other factors, such as lack of sleep or stress, could trigger seizures. Sometimes they occurred for no discernible reason. He had the most severe form of epilepsy and suffered tonic-clonic, or "grand mal", seizures.
At an early stage of his illness, Michael decided he would ignore it as far as possible, living his life as if it mostly did not exist. He was not reckless, but he refused to limit his activities to the extent that his life would be intolerably circumscribed. He continued to swim, to cycle, to live alone when it suited him and to stay up late and have a few drinks when he felt like it. Sometimes these activities involved seizures - he came off his bike once and had a seizure in a swimming pool - but mostly they did not. His strategy made sense to him: he weighed the risk of seizure against the prospect of a life filled with fear of seizure, then chose the risk. His way of coping would not suit everyone with epilepsy, but it suited him. He told me a long time ago that he was completely reconciled to the possibility of accidental death.
Every bereaved family dwells on the qualities of their lost loved one, and we are no exception. Michael was brave, compassionate, funny, talented and very handsome. He had a sardonic, surreal sense of humour and was a brilliant mimic. An evening in his company could involve a savage imitation of Margaret Thatcher, one of Tom Lehrer's songs, uninhibited dancing, serious amounts of charm and diatribes against his many bêtes noires, all guilty of serious injustice or bad taste.
He was a dedicated primary-school teacher, a lifelong socialist, a committed trade-union activist, a splendid orator (INTO conferences have cause to remember his speeches), a talented draughtsman, an amateur actor, a perfectionist cook, a jazz lover, a terrific friend and a great father to his son, Finbar. He loved John Coltrane, Miles Davis, Janet Baker, Marcella Hazan, Antonio Gramsci, Amedeo Modigliani, Constantin Brancusi, Ken Livingstone, Saul Bellow, Glasgow Celtic and the Clare hurling team.
His sudden death has deprived us of someone we and many others relished and admired, not least for his courage in the face of his illness.
Nothing can prepare us for sudden death. Even with years of terrible fantasies about Michael's possible death, the actuality was different to anything we had imagined. The event is like an explosion from which you start to rapidly move away, using whatever you can to hold on to. Although you know intellectually that the person has died, large parts of the subconscious have yet to get the news. At Christmas last year, my brother Patrick said he would be less amazed to see Michael walk in the door than he was at the fact that he was dead.
At Michael's funeral, my mother made a courageous and moving speech about her son's epilepsy, which resulted in many donations to Brainwave, the Irish Epilepsy Association, the voluntary body that provides support and information to people living with epilepsy and to health professionals. Brainwave also campaigns for more and better research, combats discrimination and promotes awareness of the condition.
Subsequently, three of Michael's professional and trade-union colleagues, Sheila Judge, Joe Lally and Joe Duffy, conceived the idea of an appeal for further funds through the INTO newsletter, In Touch. The result was €26,000, an amazing amount of money.
My brother had to leave Dublin to live in Wexford, because on a teacher's salary he could afford neither to buy nor to rent accommodation in his native city. He was made welcome by his new colleagues in the town, who turned out in force at his funeral and at a moving ceremony in Wexford a month after he died.
Teachers formed a guard of honour as the hearse left the church for the cemetery. Teachers wrote wonderful letters of sympathy to my family. Teachers worked through his death with his former pupils, softening the blow by encouraging them to draw pictures of him and to list his attributes. And now teachers have raised an extraordinary amount of money to help others deal with an illness that is still poorly understood.
Tonight, in the Teachers' Club on Parnell Square in Dublin, the money, augmented by the proceeds of a sponsored cycle last weekend, will be formally handed over to Brainwave.
My family has agreed that it will be spent on two projects: first, the publication and distribution of Epilepsy: A Teacher's Guide, an invaluable resource for teachers faced with pupils or colleagues with epilepsy; second, the Sudep - or Sudden Unexpected Death in Epilepsy - research project, something Brainwave has been trying to get going for a number of years. My sister, Máirín, had flagged this issue as extremely important before we met the organisation, on the grounds that inadequate death certification was probably obscuring the true number of epilepsy- related deaths.
The project will cost much more than the contribution from Michael's fund, but it is important to raise awareness of how vital it is and to persuade the Department of Health and Children to provide funding.
At least 25,000, and possibly up to 40,000, people in Ireland live with epilepsy. Each year more than 100 of them die as a result of epilepsy. People with epilepsy are two or three times as likely to die prematurely than other people. Last year, the National Sentinel Clinical Audit of Epilepsy-Related Death was published in the UK. The report, funded by the National Institute for Clinical Excellence, a government agency, investigated epilepsy-related deaths in the UK between September 1999 and August 2000 in terms of pre-death care, post-mortem investigation and contact with bereaved families. Its findings were disturbing. "It was difficult to establish the true number of epilepsy-related deaths from certification data," it concluded. "This must cast doubt on the reliability of national statistics . . . . Epilepsy-related death, particularly Sudep, is still underestimated by healthcare professionals, and this may reflect the mistaken belief that epilepsy is a benign condition. The risk of death associated with epilepsy appeared rarely to have been discussed with patients or their families . . . . There was concern about many aspects of epilepsy management, and frequently management did not meet published national criteria . . . . The audit found evidence of deficiencies in access to and quality of care, communication between clinical staff and between healthcare professionals and patients and their carers, documentation and post-mortem investigation of epilepsy-related deaths . . . . Overall, 39 per cent of adult deaths and 59 per cent of deaths in children were considered to have been potentially or probably avoidable."
The report is eloquent about the need for healthcare professionals to inform themselves about appropriate treatment, to deliver it effectively and to communicate effectively with patients and their families or carers. It is crucial that healthcare professionals take the condition properly into account when treating patients for other problems and are aware of the risk of seizures and the danger they pose.
Brainwave has lobbied the Department of Health and Children for four years for funding for an Irish study, with no results so far. The estimated cost is €130,000-€160,000, a very small amount of money for a project that may save lives. At the very least, such a study would have an invaluable role in raising awareness about epilepsy, making life a great deal easier and safer for those who live with it and for their families.
Tonight will be an occasion for celebration as well as grief. Michael was a great campaigner for a range of causes, from proper conditions for supply teachers to better facilities for cyclists to the struggle to combat racism. Before he died he was thinking about involving himself in Brainwave and lending his considerable skills to its effort to spread epilepsy awareness.
Sadly, that won't happen now. But other deaths can be prevented by a small State investment in a study such as the National Sentinel Audit. The inspirational response from my brother's colleagues to an appeal for help with this mysterious illness should be echoed by a speedy decision from the Government.
You can contact Brainwave at 01-4557500. Its website is www.epilepsy.ie
