Mark explains why he became active in the work of Epilepsy Bereaved after his daughter Lucy died.

“Nothing will ever bring Lucy back, nothing will ever reduce the loss I feel and never will I cease to miss her day after day. But by being actively involved in this campaign I can feel that I am doing something relevant to her memory. If in some way I can convert her untimely and totally unfair death into action that prevents similar tragedies in the future then I benefit personally. This is my motivation for being active in Epilepsy Bereaved”.

Our daughter Lucy was diagnosed with epilepsy when she was 11. The hospital told us that it was quite a mild form and that she would probably grow out of it during or soon after her adolescence. At no time was there ever a suggestion that her condition could be life-threatening. We spoke about the risk of accidents if she was to have a seizure in a potentially dangerous situation but that was all.

Lucy initially was only having about three seizures a year although latterly this did increase significantly to once a fortnight. By then we were becoming much more concerned about their frequency. She also always had a lot of small absences. Until she was nearly 14, we hardly left her unattended. She was becoming quite frustrated with this lack of independence by this time and we did begin to ease off. We also were very nagging about her taking her medicine, but again as she got older we trusted her more to be compliant.

Lucy and I loved doing things together - especially trips, games, gardening and household activities. We were very much on the same wavelength. In 1999 she asked if she could move into a different bedroom and she had a very definite idea of how she wanted it to be. She designed the alterations and we carried out some quite extensive work to give the room a really fresh feel - such as block wooden flooring. She only lived in it for about seven months but she was very pleased and excited by the transformation. Because I worked for British Rail I had the opportunity to get some free continental train travel each year and we always tried to take advantage of it.

In April 2000 Lucy and I planned a train trip to southern Italy. However, because of her sister Laura’s forthcoming A levels it was decided that she and her mother would stay at home that year. So Lucy and I went off on our own for two weeks - she was determined to get a suntan before the summer term even started! The weather was very overcast and stormy and she was quite disappointed initially, but then became resigned to it. Towards the end of the holiday though the sun came out beautifully, for one brilliant day. She lay on the beach and got her tan all in that one day!

Lucy was 15 on 26 May 2000.

In July we had been invited to some old friends (husband and wife) who were throwing a joint 50th birthday party. Lucy did not know many of the people and she asked to be allowed to go back upstairs at 11pm. When we went up to see her at 2am we found that she had had a seizure and had recently died.

The paediatrician who had been monitoring Lucy agreed to see us after Lucy’s death. He gave us two hours of his time and was very kind and attentive. He was also quite devastated. He had never lost a patient before through epilepsy, neither had he heard of the risk of sudden death in epilepsy. The day after Lucy died she was due to have gone for her next review with him. He maintained that had this happened and even though we would have reported the now fortnightly seizures he would probably not have altered her medication or taken any other measures. He regarded Lucy as one of his low risk patients.

Soon after Lucy died my sister somehow found out about Epilepsy Bereaved. We, of course, had never heard of it. We were so grateful to talk to someone who shared with us her own experience of losing her daughter through an illness that we had not known could be fatal. After we had started to deal with our enormous grief and became aware that we were not alone in experiencing this calamity, I began to think that research into prevention or mitigation of the effects of epilepsy must be the best way to reduce the number of deaths that occur. Therefore I started to support Epilepsy Research Foundation and thought for a long time that this would be one of the best ways of doing something positive as a result of Lucy’s death.

However, as time went on, and I became familiar with the results of the audit (in May 2002) sponsored by Epilepsy Bereaved and especially the recommendations of that audit, I felt that I would personally benefit by trying to raise awareness of the risks of epilepsy. I became sure that many deaths would be preventable without any more research at all, but just by better epilepsy services, patient care more tailored to the individual case and more awareness amongst medical professionals and the families or carers of people with epilepsy. With all this in mind I realised that whilst initially I had received tremendous help from Epilepsy Bereaved in the counselling that was given in the early stages of my grief, I now wanted to be involved actively in the campaign to raise awareness. Eventually this led to me being asked to be a Trustee and ultimately to be Chair of the Education & Awareness Committee.

The campaign has recently focused on getting more people in the charity involved in raising awareness. I have been involved in designing a map showing where all our members live so that it helps to give people a sense that they are not as isolated as they think. The committee is involving more people in helping with information tables at conferences for health professionals or politicians or for people with epilepsy. Some of the team have been trained to be speakers for events. Others are involved in a range of epilepsy projects where we have been asked to participate. These have included the development of medication review information for people with epilepsy and the development of a training resource for health professionals so that they can improve their consultations with patients. A few of our team are sitting on Health Boards or Primary Care Trusts who are working on developing services for people with epilepsy. My particular role is to lead the committee overseeing this part of the charity work.

Nothing will ever bring Lucy back, nothing will ever reduce the loss I feel and never will I cease to miss her day after day. But by being actively involved in this campaign I can feel that I am doing something relevant to her memory. If in some way I can convert her untimely and totally unfair death into action that prevents similar tragedies in the future then I benefit personally. This is my motivation for being active in Epilepsy Bereaved.

Mark Phillips - Chair of the Education & Awareness Committee