Blog

February 22, 2018
But first … let me take a selfie?…

There’s a few things that spring to mind when you hear the word “selfie”. From Snapchat dog filters, tourists with annoying extendable poles, Ricky Gervais in the bath, or that awful “song” by The Chainsmokers, there is no doubt selfies have become an integral part of pop culture. The word itself was immortalised in the …

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February 13, 2018
Kate stepping down from clinical practice

Kate Khair – hailed at last week’s EAHAD meeting as the most famous haemophilia nurse in the world – will leave her consultant nurse post at London’s Great Ormond Street Hospital (GOSH) in May 2018. But she will still remain very active in the world of haemophilia. Over the past 27 years, Kate has built …

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February 8, 2018
As they say – ‘there’s no i in team’

There was a time when use of the term “multidisciplinary” in the context of haemophilia congresses meant the inclusion of a token nurse or a physiotherapist on a panel. This year’s EAHAD congress, held in Madrid, had more nurses, physios and psychologists attending and presenting work than ever before. The pre-conference multidisciplinary day showcased the …

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January 8, 2018
A practical guide to switching factor concentrates post tender

In the UK, since 2004, there has been a national tender system for the purchasing of clotting factor concentrates managed by the Commercial Medicines Unit, a part of NHS England. This has led to significantly lower prices. The outcome of a new contract means that haemophilia centres have to commit to using certain volumes of …

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December 21, 2017
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 …

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November 25, 2017
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, …

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September 16, 2017
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 …

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September 13, 2017
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 …

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August 4, 2017
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 …

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July 11, 2017
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 …

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