Due to generous financial assistance from HFA and HFACT, I was recently able to
attend the XXVII International Congress of the World Federation of Haemophilia held
in Vancouver in May.
Vancouver is a spectacularly beautiful city, bordered to the north by snow-clad
mountains, to the west by the Pacific Ocean and to the south by the USA. With a
population of just over 2 million it is the largest city in British Columbia,
and the third largest city in Canada. It enjoys a mild climate with temperatures
rarely going above 25 in Summer or below 5 in Winter. The only drawback is the
rain, of which we copped our share, but the lushness of the gardens compensated
for that. It’s obviously the perfect weather for rhododendrons as they were in
flower everywhere I looked. I found the Canadians to be friendly and relaxed,
and with daylight lasting until 10pm and most shops open until 9pm every day,
it was great to just wander the streets in the evening and enjoy the atmosphere.
The conference was held at the Vancouver Exhibition and Convention Centre which
is located right on the waterfront in downtown Vancouver, and was attended by 4000
delegates from over 100 countries.
View of the Vancouver Conference and Exhibition centre on the waterfront
(the site of the World Federation Congress)
The first day was divided into workshops for the various profession groups, and
nurses had the choice of attending either beginning or advanced programmes. I chose
the advanced programme, which covered some very interesting topics. Two UK nurses
spoke about the development of nurse-led haemophilia clinics, with one describing
the course she had completed which enabled her to prescribe medications and the
impact of that on haemophilia care. Other topics covered included an overview of
rare bleeding disorders (including a case-study of a patient with factor XIII
deficiency), severe haemophilia and ageing, acquired haemophilia, and an unusual
case history of a family with both factor VIII and factor IX deficiency. Educating
young people with bleeding disorders about nutrition, exercise and sport was also
discussed with the worrying increase in childhood obesity.
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That evening we were officially welcomed to the conference and Vancouver
and were entertained by a Scottish Highland band and native North American
dancing. The conference began in earnest the following day consisting of four
full days of meetings, with topics
of interest to doctors, nurses, counsellors, physios, dentists and scientists
working in the field of haemophilia, as well as to people with haemophilia.
The theme of this year’s conference was “Treatment for all; a vision for the
future”. Mark Skinner, the president of the World Federation of Haemophilia spoke
passionately about WFH’s new strategic plan, which embraces the vision of treatment
for all, regardless of where they live in the world. Currently 75% of people with
bleeding disorders worldwide receive either inadequate or no treatment, WFH’s
mission is to improve treatment where it is limited or non-existent, while sustaining
the many gains that have already been made. These include proper diagnosis,
management and care by a multi-disciplined team of trained specialists; and
expanding services beyond haemophilia to those with Von Willebrand’s Disease,
rare factor deficiencies and inherited platelet disorders.
The conference contained many highlights, including the opportunity to meet
other haemophilia nurses and learn more about how things are done in larger centres.
One session of particular interest to me dealt with the transition of adolescents
from paediatric to adult care. An American nurse described an education programme
she had put together to facilitate the process of adolescent boys taking more
responsibility for their treatment and health. The programme encouraged the boys
to be thinking about suitable sport and career choices, girlfriends and genetic
counselling issues as well as taking responsibility for practical things like
ordering their own factor and supplies. There were some really good ideas raised,
and I plan to modify the programme for our own boys in the ACT.
In conclusion, the XXVII International Congress of the World Federation of
Haemophilia was a wonderful educational and social event and my sincere thanks
go to the HFA and HFACT for enabling me to attend.
Liz Jarvis
(Haemophilia Nurse, ACT)
NOTE.
Other persons from HFACT also attended the World Federation congress
in Vancouver. More photos and reports will be included in the next newsletter.
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