They say better late than never
and hopefully it is with this report. I have tried
to finish it several times and now in Januray
2008 feel more up to it for some reason. Perhaps
it is John preparing Swarkestone 2008 that has
done the trick.
We had 31 people attend and both
of us were pleased with the number as until the
last few weeks we are always unsure how many will
come. The main problem is we do not have direct
contact with patients who have FAP and rely on
the website, flyers left at various health related
events, talks we give and word of mouth. In 2008
we hope to be nearer the 45 mark and would like
everyone's help in promoting it in anyway they
think fit or even unfit!
So back to March 2007, a nice
sunny day and the usual change of programme at
the last minute this time due to illness. People
came from Taunton, Cardiff, Newcastle, West Midlands,
Leicestershire, Derbyshire, Lancashire and South
John gave an overview of FAP
and only the fact he might have to repeat it again
prevents the whole talk being made available on
the website. Also we learned a fair bit about
Swarkestone Bridge and Bonny Prince Charlie who
came as far south as the bridge before returning
back home to Scotland.
Our Clinical Psychologist calling
off at the last minute through illness was covered
by Wendy Chorley from Derbyshire Hospitals who
is like our resident awkward question answerer.
Wendy talked about the psychological problems
for children and adults on hearing the news they
have FAP. This led to a fair number of questions
and proved an interesting topic of conversation.
Derek who also came last year
with his wife then talked about how he found out
he had FAP and the frustrations and almost anger
that his parents had not told him. An article
written by Derek is on the website.
We then chatted about how FAP
had affected others and the lack of a national
programme for monitoring patients. A family with
four generations from The West Midlands was pleased
with their initial diagnosis and treatment but
had heard nothing since. They were surprised others
were having checks for various other problems
with the gene.
Lunch was the usual leisurely
affair and again an ideal time for everyone to
chat and swap notes etc. After Lunch Mick who
was involved with the NHS/Macmillan Cancer Genetic
Cancer Projects introduced Sharon Lomas from Macmillan
Cancer Support who explained how seven projects
were started around the country ( Oldham PCT,
Poole PCT, West Coast PCT, Guys, The Royal Marsden/St
Georges in London, Leeds and Teesside.). These
were looking at improving standards for patients
of all genetic cancers.
Melanie Ripley and Carol from
Oldham PCT then talked about how Oldham had approached
the problem of providing genetic cancer services
and making them more accessible and raising people's
A rather quick summing
up of the day did give time for those willing
to have a trip on The Sailing Clubs Rescue Boat
which was a real bonus on a bright summery day.