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.
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.
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.
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.
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.
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.