Members Conference 2016 Report
This October saw another I.H.S Members conference which took place in the Radisson Blu Hotel in
Co. Sligo. The weekend was a huge success and proved entertaining and educational in equal
measure for both staff and members. As this conference is for members by members, the
atmosphere in the hotel was friendly and inviting, with emphasis on communication and patient and
members involvement with a plentiful dose of laughter and silliness too.
Friday evening saw the Youth group set off to Lilliput Adventure Centre for a weekend of outdoor
activity. After the Crèche, Kidlink and Cubs were firmly established into their groups with the
volunteers on Saturday morning, an interactive workshop on communication started off the
weekend for the adults. This session allowed members to share any concerns they may have, any
improvements they feel necessary with their haemophilia treatment centres (HTC s) and medics, and
to even get in touch with their artistic side by doing a bit of drawing! (When the blindfolds emerged,
everyone knew there was interesting activity in store.) Facilitated by Chairperson of the I.H.S., Traci
Marshall Dowling, these activities were useful in bringing people together to share experiences and
to practice their communication skills on one another. A common viewpoint among members was
the lack of age-appropriate information provided by medical staff and the need for increased
communication between specialists, the HTC s and patients. This workshop was useful for promoting
communication from the patients end and was demonstrated by dazzling role-play performances
from Shay, Lorraine, Ger and Brian. Useful tips included writing down what you have been told by
your doctor during and after an appointment. Do t e afraid to ask the do tor or urse to repeat
information – it will be extremely useful to refer back to it when necessary and for your next visit.
Next up was the debate, a session I was particularly looking forward to over the weekend. Jim
O Lear a d “ea us M Do ald sho ed o er
he argui g their poi ts over what was better –
current recombinant factor or extended half-life (EHL) factor. On the side of the latter, Seamus made
a very convincing argument for extended half-life products, explaining that not only would they give
a higher trough level to patients and fewer breakthrough bleeds, but also fewer infusions which
would lead to improved vein care and decreased infections. Jim approached the topic with an if it
ain t broke, do t fi it ie poi t, outli i g the su ess of urre t re o i a t to date a d of
course the expense that would be involved in EHL factor. With advanced gene therapy products and
the bispecific antibody, ACE910, coming on the market in the next couple of years, Jim would prefer
to bypass EHL factor altogether and wait for the elite products to emerge. As a Clare man, Jim used a
hurling analogy to stress this – As a hurli g tea , ould ou rather sta at Clare le el, rise to
Tipperary or aspire to be Kilke
? However, after a vote, it was clearly established that EHL factor
was the winning side as it provides a lot more benefits for patients and was ultimately the preferred
choice among members.
Saturday afternoon saw the screening of the European Haemophilia Consortium (EHC) film
e titled Hae ophilia “tories produ ed fil
aker Gora Kape ta o i . The film
documented individuals with haemophilia in France, Ireland, England, Sweden, Bulgaria and
Romania explaining what haemophilia is, how it impacts the daily lives of the individuals
affected by it and also the stark difference in haemophilia care between these countries.
The personal stories made for a very touching film and the screening was followed by a
dis ussio ith Bria O Maho .
A new aspect to this conference was the workshop on mindfulness with facilitator Nollag
Cullinan. In a time where people are constantly on the move, aiming to fill each moment of
their day with productivity, it can be difficult to allow yourself to reflect. This has proven to
lead to a build-up of stress, rumination, anxiety, sleep deprivation and depression. A point
that stu k ith e fro Nollag s prese tatio as the concept of acceptance. When we are
happy, and everything in our life is going smoothly, we do t te d to o er analyse it. We
accept our emotions because we are content. However, when we are sad or angry, we tend
to overthink and over analyse because we are uncomfortable with this feeling. It is
important to allow feelings of negativity as well as positivity to wash over us and to allow
them to pass because thoughts and feelings are transient and unavoidable. They come and
they go, and ultimately, we have a choice about whether to act on them or not. It was a
useful session for all in my opinion because it can be attributed to everyone at every stage
in their lives.
No I.H.S conference would be complete without a Saturday night dinner and entertainment,
bringing all members, staff, children and volunteers together. This year, a table quiz roused
e er od s o petiti e side a d tested e er s k o ledge ith rou ds o
usi , sport,
film, history and most importantly, haemophilia. I d like to gi e a parti ular shout out to the
Bleedin Cha ers ho, despite ha i g o od u der the age of 4 o their tea got out
of 10 for the kiddies round! However, the team that was most victorious after an intense tie
breaker was the tea Ma o for “a . Now if only their football team could match such
skill... I will say no more.
Sunday was a day of fun for all. The morning started with celebrity chef Joe Shannon doing
an entertaining cookery demonstration and showing us all how easy it is to whip up a soup,
pasta dish, and Eton mess dessert all in the space of an hour. After a quick coffee break the
games began and the meeting room was transformed into an area of fun for all. Poker
tables, Jenga, Pictionary, Catchphrase, face paint for the kids and lots of other team games
topped off the weekend for members. This final gathering rounded up the weekend for
everyone and the atmosphere was relaxed, friendly, fun and informal. It is amazing how
much members (and staff members!) can get out of a conference that is run virtually by no
haemophilia medical staff, professors or academics. Shared experiences, knowledge and
most of all, understanding are the drivers of the I.H.S Members conference and what makes
it so unique and beneficial for people with bleeding disorders and their families.
Aoife Ní Fhógartaigh
Use images: October conference debate, October conference, October conference chef, October
conference 13, October conference 5