Category Archives: Haemophilia B

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

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

Today is World Haemophilia Day

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Glenda and Alex showing their support for World Haemophilia Day 2018

April 17 marks World Haemophilia Day. This year’s theme is “Sharing Knowledge Makes Us Stronger.”

The bleeding disorders community is filled with the first-hand knowledge and experience needed to help increase awareness, as well as to improve access to care and treatment. The WFH website has an extensive and informative resource base. http://elearning.wfh.org/

Another way of sharing knowledge is by meeting with others in our community. We organise a regular events programme which is FREE for members. It’s a fun and engaging way to make friends and share knowledge and experience.

To show support and raise awareness of bleeding disorders, landmarks across Scotland will be lit red. Haemophilia Scotland has received confirmation that these landmarks are are: Edinburgh Castle, Glasgow Science Centre, Horse on the M8, Jenners Department Store (Edinburgh), Melville Monument (Edinburgh), Ness Bridge, SSE Hydro, The Titan Crane and Marischal Hall (Aberdeen). Show your support and post photos on our Facebook page of you and your friends at the landmark. #WHD2018

 

Ice Hockey at Dundee Ice Arena

Are you sad that the winter Olympics are now over? If you are a Tayside patient or a member of Haemophilia Scotland, why not join our friends in Dundee to watch an ice hockey match at the Dundee Ice Arena on March 11?

See below for more details. Don’t miss out!

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Visit to the Rare Books Collection at St Andrews

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.

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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.

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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.

 

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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!

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!

Women’s Group Afternoon Tea in Glasgow

Thank you to those who joined us on Saturday for afternoon tea at the Carlton George Hotel in Glasgow. It was a brilliant opportunity to have a good catch up, talk about our panels for the Quilt Project, chat about the Women’s Booth, all over some mouth-watering snacks and litres of tea.

We were presented with some sandwiches, scones and an assortment of very sweet desserts which all went down a treat!

The atmosphere was abounding in positivity and it was immensely encouraging and heartening to hear how everyone’s panels were coming along for the Quilt Project and to see how excited everyone is for the Women’s Booth.

Whilst at the afternoon tea, it was announced that the Glasgow Centre is going to donate £1,000 to the Women’s Booth at Congress. We are blown away by the kindness and generosity of the Glasgow Centre and are hugely thankful and appreciative of their support. This is a significant year with Congress coming to Glasgow and this donation will make a substantial difference. Thank you, Glasgow Centre!

Panels coming together for the Quilt Project

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Ideas were bountiful yesterday at the sewing session in Glasgow and much progress was made on our panels.

Our honorary President, Susan Warren, brought along some beautiful fabric from Malawi which will make up part of the backing of the finished quilt, as well as some of the leaves that will go on the tree centrepiece. This fabric symbolises the strength of the partnership between Haemophilia Scotland and our friends in Malawi and will be a nice addition to the quilt.

So far, we’ve received panels from the USA, India, England and Scotland and look forward to receiving more in time for the January 31 deadline. When you’ve finished your panel, please send it to our office:

Haemophilia Scotland
Fourth Floor, Hayweight House
23 Lauriston Street
Edinburgh EH3 9DQ

We’re hoping to put together a book that would accompany the quilt which would give a bit more information about each of the panels. Would you please include a photo of yourself and a paragraph about you and what your panel represents and means to you.  Feel free to include this with your panel when you send it in, or you could separately send it to alex@haemophilia.scot.

We are very excited to see your panels and what the end result of this international collaborative effort will look like!

A visual for those who missed the Youth Go Karting Day

The Youth Go Karting Day was a huge success and was not short on fun or competitiveness.

See it to believe it!

Teens knock the wind out of the track at Knockhill

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Thank you to all who turned up for Go Karting at Knockhill on Saturday! We had a brilliant time out on the track racing against each other.

It had been a while since the last youth event we’ve organised so it was an excellent opportunity to get the teens together to do something fun and build friendships.

After an hour of competitiveness, speed and multiple crashes into the tyre barriers (everyone crashed at least once!)  we ate lunch and had a chat about the types of events teenagers with a bleeding disorder would want to attend. We received plenty of feedback, but if you’re a teenager and you have ideas for events that you would be keen to go along to, then please let Alex know at alex@haemophilia.scot or 0131 281 7366.

In addition, we discussed setting up a WhatsApp group for teenagers with a bleeding disorder so they can keep in touch with their peers and discuss ideas for future events. Again, if you’re keen and a teenager, then please let Alex know and we can add you to the WhatsApp group.

There’ll be many more opportunities in 2018 for teenagers to get together. We’ll keep you posted with all upcoming events!

Guest blog: Darren Ford on his fundraiser skydive for Haemophilia Scotland

Darren Ford is the Facilities Co-ordinator at our Edinburgh office and raised just over £500 for a fundraiser skydive for Haemophilia Scotland. Contact Glenda at the office if you wish to do your own fundraiser on behalf of Haemophilia Scotland.

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Darren Ford , feeling relieved, with his tandem instructor following his brave leap from the plane.

After speaking with some of the lovely hard working staff at Haemophilia Scotland, I signed myself up for Skydive to raise some funds to support the great work they do. Now I should probably mention at this point I have a fear of heights so perhaps not the smartest move I’ve made.

The whole process was really easy, made more so because Haemophilia Scotland team were so helpful, along with the staff running St Andrews Skydive. It was intended to be a Santa Skydive but due to bad weather along with my luck we had to reschedule a few times.

We managed to finally get the jump completed on the 27th August 2017. I can honestly say it’s one of the best experiences I’ve ever had, and its all for a good cause! It’s no where near as bad as I thought it would be and it was highly exhilarating. I managed to raise over £500, and I would like to take this opportunity to thank everyone that donated. I hope you enjoy the video!

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