A Bleeding Disorders priority setting partnership (PSP) has been formed in conjunction with The James Lind Alliance and they are asking for your help.
The PSP is compiling a list of the 10 most important unanswered questions about bleeding disorders. Once finished, the list will be used to promote research and attract funding. It’s is very important that research goes into areas which have an impact on the lives of individuals and families with inherited bleeding disorders. That is why the PSP want to encourage those who live with the conditions to feed in their ideas and propose research questions.
All you need to do to take part is complete a short online survey.
The JLA is a non-profit making initiative which is a branch of the National Institute for Health Research (NIHR). The experience of the JLA with conducting PSPs is helping us shape and organise this project. You can find details about the JLA and other PSPs here.
Haemophilia Scotland is not a member of the PSP Steering Group but we are supportive of their objectives.
In the run up to our AGM this Saturday we wanted to publish the final report of the Needs Assessment we conducted in partnership with the Scottish Inherited Bleeding Disorders Network. We are grateful to The Lines Between who independently carried out the assessment. Thank you to everyone who took part by completing the survey to have their say.
There report highlighted that there is unmet demand for physiotherapy and psychosocial services. The services already offered in these fields are greatly appreciated but more provision is need. Some of the other key findings from the report were,
- Some people with less severe bleeding disorders suffer anxiety about how to manage their condition.
- Over half of people have additional social, emotional, or practical support needs.
- People are experiencing stigma and discrimination at work.
- While it is understood that activity is important, activity levels are low.
- People wanted more local and specific support services.
The top three priorities for the future were,
- Reducing the number of bleeds
- Finding a cure
- Reducing the frequency of infusions
Read the Report
You can download a copy here or by signing up for a free account on Issuu.
We formally launched the report on the 15th of March and then presented it to MSPs, patients, and healthcare professionals at a reception at the Scottish Parliament.
Photos from the Scottish Parliament Reception
Photos courtesy of Elspeth Parsons of The Lines Between.
We are grateful to Baxalta (a Shire company) for the unrestricted grant which made the Scottish Needs Assessment possible.
We are closing the needs assessment survey on Thursday morning (1st December). We’ve had a really good response so far but the more people who take part the more useful our results will be. We are running the needs assessment in partnership with the Scottish Inherited Bleeding Disorders Network so the results will influence the services we offer but also the services of the Scottish Haemophilia Centres.
There are some parts of Scotland that are a little under-represented at the moment. We are keen that the results reflect everyone in Scotland. So if you are reading this in Argyll & Bute, Dumfries & Galloway, East Renfrewshire, Orkney, Stirling, or The Western Isles please make a particular effort to take part.
If you do take part then you might also win one of three FitBits that we are giving away. They would make a great early Christmas present for yourself or could let you cross at least one name of that Christmas shopping list!
31st January, 1pm – Women’s Day at Blythswood Square
We will be holding our first women’s group meeting on 31st January over lunch at the lovely Blythswood Square. This group is specially for women affected by von Willebrands Disease, haemophilia and those who carry the gene. Our first meeting will be a get together to link up and discuss ways of supporting each other. Spa treatments are available! Please let me know if you would like to book a place – fill in the form below or contact me via phone, email or facebook.
Events form for Women’s Day, 31st Jan
This short video from the World Federation of Hemophilia (WFH) highlights some important issues.
- Women with bleeding disorders experience symptoms, including but not just, heavy menstral bleeding.
- Those symptoms lead to a reduced quality of life in all eight of the key measures.
- The importance of Factor replacement treatment.
The United Kingdom Haemophilia Centre Doctors’ Organisation (UKHCDO) has published it’s latest guidance on the diagnosis and management of von Willebrand Disease in the influential medical journal The British Journal of Haematology. We are pleased to see that Scotland was represented by Glasgow’s Campbell Tait.
The guidance reflects the increased understanding of the genetics behind von Willebrand Disease and how laboratory tests can help manage the condition.
At the European Haemophilia Consortium (EHC) Roundtable on von Willebrand Disease one of the most passionate discussions was about the use of prophylaxis. Therefore, it is particularly interesting to note that there is a strong recommendation on prophylaxis in the guidance.
Prophylaxis should be considered for recurrent bleeding in all types of VWD.
It was the strong view of the women with bleeding disorders represented at the EHC meeting that menorrhagia should certainly be considered as recurrent bleeding. It is very encouraging to see a specific reference to menorrhagia in the Prophylatic Therapy section of guidence that proceeds this recommendation.
Dan Farthing in Brussels on his way to the EHC Round Table meeting to find out more about von Willebrand’s Disease
Yesterday (16.06.14) the European Haemophilia Consortium (EHC) held one of their regular Round Table meetings. These events are a fantastic opportunity for healthcare professionals, patients, patient organisations and pharmaceutical companies from across Europe to come together and discuss bleeding disorders. The topic for yesterday’s meeting was von Willebrands Disease (vWD)
The event was opened by Prof Paul Giangrande (Oxford University Hospital), who raised the question of whether it really was appropriate to refer to vWD as a disease. He wondered if a term like “deficiency” or “disorder” might be more appropriate. He felt that too often physical explanations for menorrhagia (abnormally heavy bleeding at menstruation) were looked for before a bleeding disorder was considered. He also thought that patient organisations had an important role to play in raising awareness to tackle that problem.