Changing the language of haemophilia
The Scientific and Standardization Committee (SSC) of the International Society on Thrombosis and Haemostasis has proposed a change to the labels used to describe women with haemophilia. This will mean – eventually – that health professionals and researchers will cease to call them ‘carriers’ but instead recognise their experience as people with a bleeding …
Bruises, bleeds and babies – the Cinderella stories
Most people know the story of Cinderella. Having spent years being overlooked, unrecognised, ignored, she eventually achieves recognition. Her name is sadly appropriate for a study that seeks to understand the lived experience of women with bleeding disorders – even in the 21st century, the popular belief that only men are affected by bleeding disorders …
Women shouldn’t need to ask for equitable care
By Hannah Yarnall, Youth Ambassador for The Haemophilia Society UK How can you help improve the lives of women living with a bleeding disorder? Easy answer – take the time to listen. Last month I had the opportunity to join Haemnet as they hosted a Project Phoenix group discussion with women across the UK in …
Effective advocacy can help develop physiotherapy services
By Alex Taylor-Rose, Youth Ambassador for The Haemophilia Society UK Those of us who live with haemophilia are used to receiving support from the professionals within our care teams. We rarely see services from the point of view of the nurses and physiotherapists who provide care to us. So joining a Zoom call with eight …
Bleeding disorder services need to think about parents too
By Josh Taylor-Rose, Youth Ambassador for The Haemophilia Society UK What changes would have a positive impact on life for those living with or caring for a person living with a bleeding disorder? Earlier this month, as part of Project Phoenix, Haemnet hosted a group discussion that focused on the experiences of parents of children …
What’s in a name? Pain is real if you live with it
Chronic pain is defined as pain that lasts for more than three months – something that many people with a bleeding disorder can identify with. But they are not alone. Introducing its new guideline, Chronic pain (primary and secondary) in over 16s: assessment of all chronic pain and management of chronic primary pain, NICE estimates …
How safe is our prescribing practice?
The Prescribing Competency Framework sets out standards for non-medical prescribing that apply to patient assessment, treatment selection and the procedures for safe and effective prescribing that include record-keeping, clinical governance and continuing professional development. Non-medical prescribers should be applying it in every aspect of their prescribing but, according to a recent article by nurse Steve …
A very human condition: ethnography and the lived experience of haemophilia
Quantitative versus qualitative. Cold, hard facts, and structured statistical data, versus impressions, opinions, motivations, feelings, beliefs and attitudes. While measuring in numbers has long been the mainstay of research in health care – rightly and necessarily so – recent decades have seen an increase in using a ‘softer’, more experiential approach to understand what it’s …
Prophylaxis is not the end of the story for haemophilia
Widespread availability of factor prophylaxis – at least in developed nations – has changed the lives of people with haemophilia. But as clinicians we should continue to strive for better treatments. The flagship presentation the last month’s EAHAD conference – the Arosenius Lecture – was given by Marilyn Manco-Johnson who, as part of the team …
Race Around The World #RATW campaign
What started as a local attempt to re-invigorate the Yorkshire bleeding disorders community has ended up as an epic worldwide event. Members of the Yorkshire bleeding disorders community came together to discuss how best to renew the group and so re-establish the local support that it has historically provided. After a single meeting at which …