Haemnet Headed to Uganda
With the days getting shorter and colder, the Christmas advert wars underway and Christmas songs being played everywhere, it’s no doubt that the festive season is upon us, but the Christmas prep will have to wait for the Haemnet team, as we are swapping out chilly London for the equatorial heat of Uganda in early …
Joint Bleeds in Adults: Not All Pharmacokinetics
Commentary by David Stephensen (PhD), Physiotherapist, Kent Haemophilia & Thrombosis Centre and the Haemophilia Centre, Royal London Hospital
If you don’t ask, you don’t get!
Few would disagree that recent decades have witnessed massive advances in the care offered to some people with bleeding disorders. For many bleeding disorders, the treatment landscape continues to evolve; for others the struggle to be recognised continues, especially among women. Delegates attending The Haemophilia Society AGM and Members Conference in Liverpool this weekend heard …
Baby steps to a new world of treatment
With so much happening in haemophilia care these days, there’s no better way to catch up with the latest developments than to take part in an educational paediatric update event. Haemnet collaborated with Marie Eales and Sarah Poole from the Oxford Haemophilia Centre to develop this meeting, held in London on October 18. This provided …
Personalising Care in Transition
When caring for patients with lifelong chronic diseases we have traditionally used the term ‘transition’ to refer to the period of time when children and adolescents move into adult care. It has long been recognised that this is a time that that can be difficult for patients and families where there are significant personal, social, …
More questions than answers
So, the long-awaited news is out: NHS England have approved the use of emicizumab for non-inhibitor patients. Fabulous news for all. Or is it?
48 Hours in Saudi Arabia
I was invited to be part of an international faculty at a Pan Gulf meeting on bleeding disorders which was hosted in Saudi Arabia. I was asked to run a one day nurses workshop. So there was dilemma one – was it safe to go to Saudi as a woman on my own? With advice …
Where is Gene Therapy?
Haemophilia nurses are increasingly being asked about gene therapy so this overview of the science and evidence from clinical trials was a valuable update for HNA members. Mike Laffan (Professor of Haemostasis and Thrombosis, Imperial College, London) began with a straightforward explanation of the principles involved in substituting a mutated gene with a working copy …
The first Womens and Bleeding Disorders conference comes to a close – day 3
Quality of life is difficult to measure scientifically, which is why published research is often incomprehensible to the non-specialist – presenters often say more about the various instruments they used than the results they found. So it was a refreshing change to hear Naja Skouw-Rasmussen and Debra Pollard, both members of the EHC Women and …
Time to refocus? – EHC Women and Bleeding Disorders Conference Day 2
The second day of the EHC conference on women and bleeding disorders looked, from the agenda, to be all about clinical issues – a management plan for heavy periods, oral care, detecting and managing iron deficiency anaemia, but it turned out to be a day when the importance of attitudes and labels came to the …