Blog

Is it time to look beyond bleed rates?

Is it time to look beyond bleed rates?

28th November 2017

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.

What sort of future should we create for haemophilia?

What sort of future should we create for haemophilia?

28th October 2016

Perhaps it was just the clean, crisp Nordic air, but last month’s European Haemophilia Consortium (EHC) opened with a real sense of hope and optimism. For some, it was the realisation that we are on the cusp of a new era of haemophilia management. For others, there was the growing sense of unity amongst the international bleeding disorder community.

Changing practice? Yes we can

Changing practice? Yes we can

6th October 2016

It took nearly two years, five whole day meetings, numerous emails and a little blood/sweat but no tears to plan our first residential training course for haemophilia professionals.

The Edinburgh Psychological Support Project

The Edinburgh Psychological Support Project

7th September 2016

Recent campaigning from those with haemophilia and their families for increased psychological support across Scotland has resulted in funding by the Scottish Government for a two-year pilot project based in the Edinburgh haemophilia centre.

More data, if not clarity

More data, if not clarity

7th February 2016

It was probably one of the most hotly anticipated sessions of EAHAD 2016. Saturday afternoon the meeting concluded with a Hot Topics session on type of FVIII concentrate and inhibitor formation in PUPs chaired by Jan Astermark, Philippe de Moerloose and Cedric Hermans.” The session contained updates on new data from the randomized SIPPET study (by Flora Peyvandi), and the observational France Coag and PedNet studies (Jenny Goudemand and Johannes Oldenburg, respectively). And Alfonso Iorio was there to comment on how to interpret the new data. It promised so much – could it possibly deliver?

Are we transforming transition?

Are we transforming transition?

27th November 2015

My head is reeling from all of the bright ideas and madness floated at yesterday’s Transforming Transition meeting in Birmingham. Thanks to everyone who came along and shared so much good material on what was a really great day.

Encourage your patients to keep active

Encourage your patients to keep active

23rd October 2015

As a Physio working in haemophila I started to notice that a number of our “sporty” patients were less keen to stay active as they entered their teenage years. In an ever-changing world of social media and “gaming” it was becoming more and more difficult to persuade patients to stay fit and active as part of the management of their haemophilia.

“I read the news today, oh boy”

“I read the news today, oh boy”

4th March 2015

It has been one year since we launched the The Journal of Haemophilia Practice so it is time for our annual appraisal.

Bubble Wrap Boy

Bubble Wrap Boy

3rd October 2014

Ethnographic research aims to observe people in their natural settings, to gain insight into how they manage their daily lives, what they value and which factors adversely affect their ability to live their lives as they wish. The current issue of The Journal of Haemophilia Practice has an article by several UK nurses on the HaemophiliaLIVE project. This was a Novo Nordisk sponsored project in which nurses at four centres used a novel video-based methodology to capture the real-life experience of 16 families living with haemophilia. It seeks to capture the patient-level experience that is generally missed in scientific studies.

That was then, this is now, isn’t it?

That was then, this is now, isn’t it?

14th August 2014

In the high tech and largely recombinant era of haemophilia care at home, it is easy to forget that it is not so long since care of those with haemophilia often involved long periods of time in hospital. And given the current focus on treatment adherence, it is odd to think there was once a time when haemophilia patients did what they were told by their doctors.

Apps and adherence – its time to join the dots

Apps and adherence – its time to join the dots

12th May 2014

We all know there’s an app for everything these days. In the Nurses Professional Development session at WFH in Melbourne, Robyn Shoemark from Sydney reviewed the advantages and drawbacks of data collection using patient-held apps.

Erasing HCV – that would be NICE...

Erasing HCV – that would be NICE...

22nd April 2014

Twenty-five years ago the cause of non A-non B hepatitis was discovered when HCV was identified. Since then we have cured HCV in some patients with interferon – yet another injection for those with haemophilia. While for some this has been a cure, many have been either unable to tolerate the side effects of treatment, have not lost virus during treatment or have relapsed. Now for these patients there is new hope.

Speak out. Create change

Speak out. Create change

17th April 2014

As today is World Haemophila Day, it seems only right to re-run the official WFH statement, in case anyone has missed it.