Category Archives: Support

NHS Greater Glasgow and Clyde Update on Bacteria Concerns

Haemophilia Scotland has received and update from NHS Greater Glasgow and Clyde (NHSGGC) about how they have responded to the bacterial infections at the Glasgow Royal Hospital for Children.

This is their message in full.


Patients in the affected wards at the Royal Hospital for Children (RHC) are expected to be able to resume using showers and tap water for bathing today (Thursday, 22 March).

Filters have now been fitted to the affected wards. Bottled and sterile water will continue to be provided for drinking and brushing teeth while investigations continue.

Four children remain stable as a result of their infections and continue to receive treatments for infections which may be linked to bacteria found in the water supply at the RHC.

The parents of all affected patients were immediately spoken to by their consultant following receipt of lab test results being made available and have been kept fully informed throughout.

There are no reports of any patients being infected by bacteria from water in Queen Elizabeth University Hospital (QEUH) wards treating the most immunity compromised patients.

Appropriate infection control measures tailored to each patient in the affected QEUH wards are in place, including the provision of sterile wipes for cleaning skin and bottled water for drinking and brushing teeth.

We continue to investigate the presence of bacteria in the water supply to some wards in the RHC with input from experts at Health Protection Scotland, Health Facilities Scotland and Scottish Water.

All of the actions we took including the switching off of showers and taps during the investigation were taken with the safety of our patients on these wards in mind.

See you at Landmark on July 14!

Our next Children and Families Event is at Landmark Forest Adventure Park in Carrbridge, on July 14 from 12:00pm-5:00pm.

Events are free for all members, and if you’re not a member already, all you need to do to join is fill in this simple membership form. There is no cost involved.

We will have lunch upon arrival and will have all afternoon on the roller coasters, waterslides and climbing walls for the serious adventure junkies. If you’re after something a bit more relaxing, there are optical illusions, an ancient forest to wander through and a butterfly house. There’s something for everybody.

Looking forward to seeing you there!


In the recent edition of The Wire, the date for this trip was incorrectly noted as July 17 so apologies for any confusion.


Teen Sailing Trip: July 29 – August 3

The Challenger


TEEN SAILING TRIP, July 29 – August 3. Portsmouth, England.

This is an amazing, FREE opportunity open to teenagers aged 12+ with a bleeding disorder. 


About the trip:

On July 29, we will fly from Scotland down to Southampton and stay the night on the Challenger ship in Portsmouth. In the morning of July 30, we will begin our voyage and set sail from Portsmouth to Cowes, Poole, Weymouth and Lymington before returning to Portsmouth on August 3.

Throughout the trip, we will sail in the mornings and sightsee and explore around the different ports in the afternoon and evening.

As described on the Tall Ships website, “As well as learning to sail, you will be fully integrated into the crew, responsible for running the vessel 24/7 which includes learning to navigate and read charts, as well as assisting in the galley and helping to maintain the vessel. You will gain so much experience from sailing with us, not only will you leave with new peers and buckets of enthusiasm but you will also have more confidence in yourself, learn how to take on a challenge and overcome hurdles, be willing to take on new responsibilities and hopefully leave with a passion for sailing.”

We will fly back to Scotland in the evening of August 3.

The nearby haemophilia centres in Portsmouth, Cowes, Poole and Weymouth know we are doing this trip and there will be two haemophilia nurses and specialist youth workers onboard.

>> To apply, please email BEFORE APRIL 20 and in no more than 300 words, explain why you would like to go on the trip and the impact it will have on your life.

If you have any queries, please email We will organise an event closer to the time to discuss any queries parents may have.


About the Challenger boat:

  • Name: CHALLENGER 3
  • Class: C
  • Nationality: UK
  • Year built: 2000
  • Home port: Portsmouth
  • Rig: Bm Cutter
  • Height: 27.54 m
  • Length: 21.99 m

The Tall Ships Challenger Fleet yachts are 22 metre (72 foot) steel hulls built in 2000 and designed to race around the world ‘’the wrong way’’ (against prevailing wind and tide), so are exceptionally strong and seaworthy.

There are four yachts in the Challenger fleet and they are operated by the Tall Ships Youth Trust. The charity, which celebrated its 50th anniversary in 2007, also operates the brig Stavros S Niarchos, a catamaran and a ketch.

The Challengers, which can each accommodate a crew of up to 18, previously took part in the Round the World Challenge races. They are modern, safe, purpose-built yachts, perfect for sail training and coastal adventures. With a Bermudan Cutter Rig, the Challengers can sail with a mainsail, two headsails and a spinnaker. They have a large cockpit, sturdy decks and a state of the art navigational suite.

More information on Tall Ships can be found at

Let us know if you would like to attend the WFH Congress in Glasgow, May 20-24.

Don’t miss out on a once-in-a-lifetime opportunity!

The 2018 WFH Congress is coming to Glasgow.

This is the first time that Congress has been hosted in the UK and is a special and unique opportunity for you to attend this worldwide gathering. It’s the largest international meeting for the global bleeding disorders community!

You will meet industry experts, hear the latest from the pharmaceutical companies, meet other people from the international bleeding disorders community and so much more.

We think this is something you would not want to miss!

We currently haven’t got a budget for the registration costs or accommodation costs of attending the Congress. We ask if you need a bit of financial assistance and if you would like to attend for the whole of Congress, or if you are thinking about attending, please let us know by completing the below form by March 21. We can’t promise anything, but we are hoping to get funding so we can get as many people attending as possible.

This is an opportunity not to be missed!


#PressForProgress for women with bleeding disorders on #IWD2018

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

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,


Make a difference for women at Congress

The Women’s Booth at the World Federation of Haemophilia Conference in May this year is, as some of you know, being hosted by Haemophilia Scotland.  Many of you are already aware and participating in our ongoing quilt project which will be displayed there.

Working in partnership with Glasgow Haemophilia Centre, we thought it would also be a nice gesture to recognise that no matter how little we have, some women and girls in the world have much less, particularly of the basic things we come to take for granted.

In many of the international communities, item such as pants, socks, sanitary wear, deodorant, shampoo, toothpaste, toothbrushes etc are luxury and commonly non existent items for many women.

We would like to collect some of these items and make them available to anyone who needs them during the conference and anything unused thereafter be sent to women and girls in Malawi and Kenya as part of Haemophilia Scotland’s ongoing programmes in these countries.

If you can and would like to donate any of the items mentioned above (or any other small items you can think may be useful) which could go into a small “goodie” bag for these girls and women, these are being collected at the Glasgow Haemophilia Centre and the Haemophilia Scotland Office.

Let’s make life a wee bit more comfortable for these girls and women with a great Scottish welcome!

If you wish any further information regarding this, please contact Nancy Brodie at the Glasgow Haemophilia CCC on 0141 211 5127.


Stay safe in the snow


As the red weather warning has been extended, LloydsParmacy Clinical Homecare have had to make the decision to have no distribution in Scotland today.  They will continue to monitor the situation and hope to resume service tomorrow (Friday) and also into Saturday.  They are very grateful for everyone’s patience. They will contact you directly if your delivery will be affected.

The Haemophilia Scotland office is closed today but staff will be working from home.  If you’d like to get in touch please use email if you can.  As usual, all medical enquiries should be directed to your Haemophilia Centre.

We are all extremely grateful to the dedicated staff of the Haemophilia Centres, many of whom have battled into work today.  We’ve heard some Center staff didn’t even get home last night, choosing instead to stay in local hotels to make sure their Centre was staffed today.

More information about the travel disruption, including advice on whether and how to travel can be found on the Traffic Scotland website.

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