Trish lights up Princess’s Christmas tree
Decorating the tree is often a problem when you live in a massive old town house in the centre of London. This year, the lucky residents of Clarence House were able to call upon expert help from specialist nurses and the families they help. HRH The Duchess of Cornwall is patron of the Roald Dahl’s …
Is it time to think beyond bleed rates?
It is reasonable to assume that all stakeholders in haemophilia care want the best health outcomes from every health care pound. Trouble is, each stakeholder has a unique perspective and different expectations. Speaking at a recent Bayer Healthcare Hematology Conference, Mark Skinner, President and CEO of the Institute for Policy Advancement and former WFH chair, …
Haemophilia care at Mulago Hospital, Kampala, Uganda
Day 4 An early start today, giving ourselves plenty of time to navigate the Kampala morning rush hour. If you think London is bad, then you need to experience this! Our trusty driver, Vincent, snaked through the traffic with ease as we watched an impressive sunrise through a haze of exhaust fumes and orchestra of …
Haemophilia in Uganda | Meeting the bleeding disorder community
This week I have been in Uganda, documenting the situation of haemophilia in the country. I have been meeting with various members of the community through connections made by Kate Khair over the last four years. Kate is a nurse consultant at Great Ormond Street Hospital (GOSH) in London, and has been the lead for …
Psychologists bring specialist knowledge to enhance haemophilia practice
Many patients living with chronic conditions such as bleeding disorders will experience mental health issues at some stage in their life. Psychologists are increasingly seen as crucial members of the haemophilia MDT, offering specialist knowledge to help patients deal with issues that affect them in living with their haemophilia. Haemnet recently supported a meeting of …
Benefits and beyond: exploring the diverse roles of social workers
Social workers sited in the haemophilia and bleeding disorder community from across the UK, recently got together for the day to explore their roles and share their experience. This day was hosted and facilitated by Haemnet as part of its support for the psychosocial members of the haemophilia team. Traditionally within haemophilia, the role of …
Let Haemnet help you “Find Your Voice”
Public speaking can be daunting but it is a rewarding experience that is increasingly important for haemophilia nurses seeking to establish their professional role. At this year’s HNA meeting, a workshop organised by Anne Wareing and Pamela Wick and supported by CSL Behring, sought to provide nurses with the groundwork needed to help them communicate …
No “clear and consistent evidence” of difference in inhibitor risk
There is no clear and consistent evidence of a difference in the incidence of inhibitor development between factor VIII products derived from plasma and those made by recombinant DNA technology. The Pharmacovigilance Risk Assessment Committee (PRAC) of the European Medicines Agency has now completed its review of factor VIII medicines to evaluate the risk of …
HNA 2017, Birmingham
Nurses make difficult decisions on a daily basis and many of these raise issues of consent, confidentiality and ethics. All of us, at one time or another, are uncertain which is the best course of action because it’s difficult to reconcile the conflicting needs of the people involved and our professional obligation to exercise a …
Providing haemophilia care from Truro to Lands End and beyond
With so much focus on the haemophilia care provided by comprehensive care centres (CCCs) it’s sometimes easy to forget that for many people a visit to the haemophilia centre is a distinctly local affair. Few parts of the UK exemplify this better than Cornwall, a large and geographically isolated peninsular where the resident population of …