Panto time – look out Mother, it’s right in front of your eyes!
With growing pressure on clinical decisions, you, like many others in clinical practice, have probably thought the last few years were quite tough. But for the industry, haemophilia has proven something of a golden egg. According to a new report by analysts at TechNavio, the global haemophilia market grew at a compound annual growth rate …
Is specialised commissioning the way to improved haemophilia care?
Inspiration isn’t really something you expect to find on a Saturday afternoon in a dim hotel room at Manchester Airport. But this year’s Haemophilia Society AGM offered bucket loads of it, right from the moment that championship swimmer Jack Bridge (above) began talking about his punishing training schedule and how he had not let his …
You never know who is lurking
Chillaxing in the sun this summer, you might have noticed that privacy has been much in the news (and I’m not just talking about David Cameron struggling into his swimmies on a Cornish beach). You are probably not too concerned about whether or not the USA’s National Security Agency is actively monitoring Haemnet, but you …
Is there a doctor in the house? There is now!
Congratulations are due to two Haemnet members who have become the first haemophilia nurses to be awarded doctorates. Just over a month ago, Karin Lindvall from Malmo blazed the trail when she successfully defended her thesis, with Kate Khair following last week. Undertaking a PhD (or Doctor of Philosophy) is a major commitment. Leaving aside …
Is it time to move beyond the 1% target?
In haemophilia A, prophylaxis aims to increase trough levels of factor VIII above 1% through regular, long term intravenous administration of concentrates, with the ultimate aim of converting a severe bleeding phenotype to a moderate phenotype. In a Bayer-sponsored symposium on prophylaxis at the ISTH meeting in Amsterdam, Professor Cedric Hermans from Louvain, Belgium, noted …
Patient-centered care needs patient-focused research
Healthcare professionals frequently talk about patient-centred care, and probably most believe it is what they provide. But how many actually play an active role in the research that informs those decisions? Mention the word research in the healthcare setting and most people will immediately think of drug trials. While its clearly important to study new …
Breaking down the research barriers
Most of us would agree that clinical research is a good thing – we need it so that healthcare providers can keep improving the treatments we offer to patients. In most conditions this involves doing large scale trials to generate evidence. Nationally, more patients are getting involved year on year: last year over 595,000 patients …
This One’s For the Girls
How many girls and young women do you see with bleeding disorders? And how well do they cope with their condition? Last year, we explored the everyday lives of girls and young women with bleeding disorders by means of a couple of focus groups. We found that young women with IBD who are managed at …
Haemophilia nurses – a hugely professional yet untapped resource
As World Haemophilia Day falls in this week, it seems appropriate to celebrate the professionals in the front-line of improving the lives of people with haemophilia. So let’s have a big hand for the UK’s Haemophilia Nurses’ Association! What do we know about this rare breed? Last year we invited all of the haemophilia nurses …
Trees and next year’s Snippety Bits
Last year, Haemophilia published a paper entitled “Why don’t haemophilia nurses do research?” Based on an HNA survey from a few years ago it explored the systemic, professional and personal barriers that prevented haemophilia nurses from doing one of the things that is fundamental to the CNS role. Funding is one of the barriers mentioned …