Category Archives: von Willebrands Disease

Glasgow Royal Infirmary write to bleeding disorders patients about the plan to move the Haemophilia Unit

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Melanie McColgan, Specialist Oncology Services & Clinical Haematology General Manager with NHS Greater Glasgow and Clyde (NHSGGC), has written to all patients registered with the Haemophilia Unit at the Glasgow Royal Infirmary (GRI) about the proposal to move the Unit.

Read the GRI letter to patients

The key points of the letter are,

  • They are proposing to move the Haemophilia Unit so that a new discharge hub can be built.
  • The Haemophilia Unit will stay on the GRI site.
  • The proposed new accomodation is the first floor of the St Mungo building which is located off the link corridor behind the area occupied by Plastic Surgery. The area is accessible via a lift.
  • The nearest access point to the St Mungo building is via Castle Street, or via vehicle access from Wishart Street where there are disabled parking spaces. They have agreed that additional disabled parking will be provided in the area directly behind the St Mungo building and that these spaces will be for patients accessing services within the St Mungo building.
  • They recognise that the new location may not be considered as easily accessible as the present unit.
  • They are committed to work with a small patient group to remove accessibility obstacles presented by the new location.
  • They have no timescale for any move taking place, but undertake to keep patients and staff advised of developments.

The letter advises patient that The Haemophilia Society West of Scotland Group is holding a meeting for patients on,

Saturday, 23rd June at 11am
The Boardroom
Ground Floor, Glasgow Royal Infirmary

Management and clinicians from the Haemophilia Unit have been asked to attend to talk about the rationale for the move and discuss the detailed plans. If you wish to attend this meeting, please e-mail John Prior, Secretary of The Haemophilia Society West of Scotland Group at prior-john2@sky.com or text him on 07876 592 087.

Haemophilia Scotland are not currently taking part in the process.  We have written to the Cabinet Secretary for Health and Sport, Shona Robison MSP, to object to NHSGGC taking the decision to move the Haemophilia Unit without consulting patients.  We have asked the Scottish Government to call-in the decision and to trigger a full consultation so that all patients can express their views.  We think it is a fundamental principle that no changes which affect people with bleeding disorders are made without involving them at all stages – “nothing about us, without us.”   Until we hear back from the Scottish Government we don’t think it is appropriate for us to engage with the NHSGGC process which it is restricted to communications, engagement, and access issues.

Read our letter to Shona Robison MSP

#PressForProgress for women with bleeding disorders on #IWD2018

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Today is International Women’s Day and Haemophilia Scotland is highlighting the important work of women around the world who are fighting for diagnosis and access to treatment for women with inherited bleeding disorders such as von Willebrands.  Working together on gender equality in treatment is integral to our partnerships with our friends in Kenya and Malawi.

To watch the full videos of this panel discussion of 5 different von Willebrand disease outreach programs and the keys to their success, and for hundreds more bleeding disorder resources, go to http://eLearning.wfh.org.

The Haemophilia Scotland Women’s Group is proud to be hosting the Women’s Booth at the WFH Congress in Glasgow this May.  The booth will be showcasing amazing work from all over the world and providing a place for women with bleeding disorders to meet and exchange ideas.

Find out more about,

 

Visit to the Rare Books Collection at St Andrews

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On February 5, a few of us visited the University of St Andrews’ Rare Book Collection to see how women’s issues are portrayed in historical texts. Thinking ahead to the Women’s Booth at Congress in May, a lot of attention and focus will be on the present and the future, so the purpose of this visit was to encapsulate the past with the present and future,

providing one holistic overview.

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The University of St Andrews is the oldest of the four ancient universities of Scotland and the third oldest in the English-speaking world. Founded in 1413, we were fortunate to have the opportunity to pore over books from as far back as the 1500s.

In doing so, we were able to see how women’s issues were portrayed in historical texts, which highlighted how far medicine and technology has advanced since then, leaving us optimistic about the progression of modern medicine.

We all thought the visit was worthwhile and we share our thoughts on the visit below.

 

1

The incredible level of detail. Note that the veins look like branches – Inspiration for the centrepiece for the Quilt Project.

Joan: Joan was intrigued with the sharp detail of the drawings. MRI scanners and the like are recent inventions that provide us with images of the interior of the human body. Historically, any research on the human body was done post mortem and an artist would illustrate the findings.

S4

Susan was interested in the forceps illustration.

Susan: I was interested in the lift the flap illustration in the text book dated 1830. Basically, the illustration showed how to use forceps.  I had been very sick for 2 days before my son was born early at 38 weeks. My GP had the forceps ready as he thought I was too weak to deliver the baby alone. I had a great fear of anything like that and luckily my son was born without them. 4 months later he was diagnosed with severe haemophilia A, and I was diagnosed at the same time as having low factor levels.  Lucky for us both! Later, my GP remarked at how relieved he was about not damaging my son with using the forceps.  I added for me too – a reminder that childbirth is risky too for carrier mother.

3

Alex R was impressed with the printing

Alex R: Alex was really intrigued with how the illustrations were printed and was cleverly able to distinguish the difference between the laborious manual printing process of the 1500s to the machine printing of the 1800s.

 

S6

Alex W: The book that stood out the most to me was a book from the 1500s that had illustrations of babies (with a full set of hair!) in the womb. There was one image in particular, of twins, that resonated with me because I know how complicated a multiple birth pregnancy can be. My mother gave birth to triplets, and without modern medicine, would most likely not have survived. I felt a bit sombre thinking about the risk that pregnancy carries but grateful for the advances in medicine.

We came away from the visit with insight into how women’s issues were portrayed in historical texts, and with a deeper and more comprehensive understanding of how the issues of the past, present and future are all interlinked.

Thank you to all who came to our Family Day at Hampden Park!

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Thank you to all who turned out to our Family Day at Hampden Park on Saturday!

There were around 70 people who attended and it was an excellent opportunity for old friends to come together and for new friends to be made.

We were given a tour of the 52,063-seat stadium and got to explore the Hall of Fame and Football Museum. FIFA on the Xbox proved to be a popular museum exhibit!

Following the excitement of the museum, we went upstairs to the Millenium Suite and got to enjoy the panoramic views of the stadium over a tasty lunch.

While on the tour, we were given the chance to kick a ball into a goal and have the speed recorded. Teamophilia Scotland has some strong kickers with speeds in excess of 45km/hr recorded!

If you were unable to make it on Saturday, take a look at our Events calendar for our upcoming events. We hope to see you at one of our events soon!

What research question would do most to #StopTheBleeding?

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Stop the bleeding

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.

Stop The Bleeding 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.

Read the Scottish Needs Assessment Report

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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,

  1. Reducing the number of bleeds
  2. Finding a cure
  3. 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

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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.

Last chance to have your say in our #NeedsAssessment

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Fitbit-Alta-Fitbit-Blaze

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!

Click here to take the survey

Upcoming events

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Upcoming events

31st January, 1pm – Women’s Day at Blythswood  Square

Monte Carlo Room

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



WFH highlight the impact of having a bleeding disorder for women

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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.

New UKHCDO Guidelines on von Willebrand Disease published

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vWD GuidelinesThe 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.

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