Bowled Over by Basingstoke
There is more to haemophilia treatment centres than meets the eye. While I value the importance of a great multidisciplinary clinical team, I have come to realise that connecting with other lads my age who are on similar journeys really helps me to deal with the challenges of living with a bleeding disorder.
Today, Facebook and other online networks can help bridge the gap between clinical advice and the need to hear directly from someone who has experience of your bleeding disorder. Patient organisations like The Haemophilia Society are also key facilitators of this. But haemophilia centres are social hubs in their own right. They might not be the first place you would imagine that you could meet new friends, yet it can be the one time where the local bleeding disorder community come together. The opportunity is there for the taking to support patient engagement, especially young people trying to find their way.
A great example of this was Basingstoke haemophilia centre’s winter party at Hollywood Bowl. Lara Oyesiku (Clinical Nurse Manager) and Sarah Mangles (Centre Director) organised and ran the event and kindly invited me to see first-hand how young people aged 7 to 11 from the same centre can really benefit from meeting others like themselves. “Often our patients do not get the chance to meet other people their age with a similar condition and we feel it is important that they have the chance to realise they are not alone/the only one with the condition,” said Lara.
Bowling proved to be right up everyone’s alley (no more puns, I promise) as everyone could take part and root for each other (though a little friendly competition never hurt anyone). Over the course of the game and lunch, it was intriguing to learn about their understanding of each other’s haemophilia. Some boys were already receiving longer-acting factors. One boy with haemophilia B told me that he had learned to self-infuse ahead of his school trip, although the fact that his one dose of treatment should cover him for the week made all the difference. Not so long ago, when I was his age, I had no choice but to have my mum accompany me (and cramp my style!).
It was impressive to hear how many different sports they are all involved with, from weekly football to basketball and regular swimming lessons. They also spoke about what they knew of their family histories; one boy had an uncle with haemophilia, another’s mum had von Willebrand disease. Others had siblings but were the only affected child; “we’re so unlucky” they said, proving how events like this are essential to help young people realise they are not alone.
Putting such an event on is no mean feat and as Sarah explained, “funding can be an issue depending on hospital policy/charity accounts as it is more social than purely educational.” But she would definitely advise other centres to try to go ahead and do it, “even if it is only a small number of young people attending initially.”
The feedback from the boys and their parents makes it all worthwhile. One parent said: “Thanks for organising today, he had a great time. It did him the world of good to remember he is not the only one with haemophilia.”