Blog

May 28, 2019
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 …

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May 27, 2019
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 …

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May 26, 2019
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 …

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May 24, 2019
The first ever EHC Conference on Women and Bleeding Disorders kicks off – Day 1

The first day of the EHC Conference on Women and Bleeding Disorders (WBD) lived up to the promise of a packed agenda, with five hours of presentations and discussion. EHC Chief Executive Amanda Bok warmly welcomed participants, pointing out this was the first international meeting with WBD at its heart – certainly in Europe and …

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May 13, 2019
Spotting the red flags – in patients and in ourselves

The Centre for Mental Health (CMH) is a charity that aims to do the thinking on behalf of the mental health system through research, economic analysis and influencing policy. Chief Executive Sarah Hughes described its activities as tackling ‘areas other people don’t enjoy looking at’. Poor mental health is common – everyone has experienced mental …

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May 7, 2019
Caring Behind Bars

Haemophilia Nurses Association Annual General Meeting, Birmingham March 29th/30th 2019 We hope that most of the haemophilia nurses attending the HNA AGM in Birmingham did not have first hand experience of one of Her Majesty’s prisons but two speakers definitely did. Yvette Carroll, Primary Care Service Manager, and Michele Ramkissoon, Ward Manager, described the challenges …

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May 2, 2019
Contaminated blood – lessons for our future

When Maureen Fearns, a nurse working at the haemophilia centre in Newcastle, and her colleagues founded the Haemophilia Nurses Association in 1982, they didn’t realise how important its networks and mutual support would be. The nurses who wanted to improve patient care by sharing experiences and learning from one another were soon to face the …

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April 17, 2019
Moving beyond Facebook: unlocking the potential of social media for nurses

It’s often said that social media is changing our lives. Speaking at the 2019 HNA meeting in Birmingham, Teresa Chinn disagreed: “our lives have already been changed,” she said. Teresa is a nurse and founder of the Twitter account @WeNurses. She was (and remains) an agency nurse, Tweeting under her own name as @AgencyNurse. Not …

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April 8, 2019
How well do you support the B team?

Christmas Disease, the Royal Disease, the “special ones” – just a few of the alternative names for haemophilia B (full disclosure, I made up that last one). We all know that haemophilia B is less common than haemophilia A, but traditionally they have been considered clinically indistinguishable. However, it has recently been suggested that haemophilia …

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March 6, 2019
Everyone can help improve services – all it takes is an idea

Over the four years that Marie Eales has been a paediatric haemophilia nurse, she has become increasingly aware of the need for further education around immunisation practice for vaccine preventable infectious diseases. Upset parents, she says, “were calling me and letting me know their thoughts and feelings after they’d attended a GP service or had …

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