News

Monday
I'm organising a conference about epilepsy awareness and spend all day on the phone trying to raise sponsorship money. I am amazed by how many companies don't bother responding to letters but respond to my phone calls. Ring one of the guest speakers to organise despatch of his presentation. He has no recollection of the booking, which was confirmed months ago. Must wait to deliver the bad news to my manager, who is out of the country.

Tuesday
The charity's branch treasurer rings to say we've received several donations as bequests following the death of a woman with epilepsy. Write an appeal to members for ideas on how to use the money. In the afternoon, I collate and deliver the final stage of our donation of reference books to local libraries. It's part of our commitment to community resources as parents complain about the lack of information when their children are first diagnosed with epilepsy. We operate a loan system for books and videos and make an annual epilepsy-friendly school award.

Wednesday
Spend the morning preparing for a conciliation meeting. Call the family concerned to reassure them and see if they have last minute concerns. They are frustrated, angry and fearful. Check they are happy with the meeting's agenda and I promise to arrive early. Supposed to find 15 hours a week to study for my degree but can't find 15 minutes at the moment. Decide to take radical action and book a holiday.

Thursday
Attend meeting as an advocate for a family who have experienced eight years of discriminatory practice. It's chaired by the chief executive of the trust who promises the family "the buck stops here". They find that difficult to believe and still want someone to provide answers. I've been asked to join the trust's care plan team to address training and awareness options. The family's faith and trust will be hard to secure if I do it. Acute stress is now my way of life.

Friday
I'm the guest speaker at a carers' centre information day. Social issues of living with epilepsy are always overlooked in favour of the medical model. Parents attend and discuss advice received on the protocol of taking anti-convulsants. Thank heavens a community nurse is available because one parent says she was advised by a GP to "feed" medication regularly to her son to bring him out of repeated seizures. The ramifications of poisoning and liver damage loom large.

Saturday
Attend the launch of a initiative by a lead body. It means we'll have to revamp all our material, and find the hours and cash to do it. Raising and distributing our funds are already a huge problem. Our community commitments deserve more time and money than we have.