Category Archives: Events

CPG on Rare, Genetic, and Undiagnosed Conditions discuss supporting families

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Haemophilia Scotland is a founder member of the Cross Party Group on Rare, Genetic, and Undiagnosed Conditions (CPG) in the Scottish Parliament. It gives us a chance to work with other patient group and supportive MSPs to give all rare conditions a louder voice.  As individual conditions we all have small numbers but 1 in 17 people will experience a rare condition during their lifetime so together we can have more impact.

The meeting covered two important topics which will be interesting to families with inherited bleeding disorders.

June 2018 002

Firstly, we heard about a Rare Diseases UK report “Understanding Children and Young People’s Experiences (2018).”   It’s key findings are,

  • Children affected by rare disease are adaptive, resilient and do not see their rare disease as a fundamental part of their identity.
  • There are aspects of their care children think could be improved.
  • The people that care for children, both at hospital and at home, play an important role in shaping children’s experience of living with a rare disease.
  • Children’s needs and challenges change as they get older, meaning the experience of young people is often very different to that of children.
  • Siblings understand a great deal about their brother or sister’s care and develop skills in empathy and compassion, despite facing challenges.

Both the findings and methodology of the report are very useful for us as we work to improve our children and families services and develop our teenagers project.

Secondly, the Scottish Government presented on the consultation they are conducting to develop a resource for Supporting Disabled Children, Young People and their Families.

June 2018 003They are working with individuals, families, and organisations to produce a rights based resource.  At the consultation stage it is only available as a document but once it is agreed they plan to use the information to develop a website and app.  They are hopping to make it much easier for families with disabled children and young people to find out what services and support they are entitled to and where they can go for additional support.

If you’ve ever felt like you don’t know what services you should be getting or where you can get more information then please take part in the consultation.  They really are keen to make sure the resource isn’t just another Government policy document, they want to to be something that is practical and useful.

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

July 14th campaign meeting to cover the Scottish Scheme and the UK Inquiry

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We are holding another joint members’ meeting with the Scottish Infected Blood Forum on Saturday July 14th at the Mercure City Hotel in Glasgow from 11:30am to 4:30pm.

Recent meetings have focused on either the Scottish Infected Blood Support Scheme (SIBSS) or the UK Infected Blood Inquiry.  This meeting is unusual as it will cover both.

We are expecting that by 14 July the Clinical Review Group Report will have been published.  The meeting will let us come together and respond to it.  The Scottish Government know we are meeting and will use any feedback from the meeting to inform their response to the report.  The terms of reference for the group means the report will be of most relevance to those in the current Chronic (Stage 1) category, including the widows.

The Secretary to the Infected Blood Inquiry has also agreed to come to the meeting to give affected people in Scotland up to date information and an opportunity to ask questions.

Because the meeting is longer than usual we have decided to provide a light lunch.  However, we have very limited funds so will only be able to provide lunch for those who register in advance.  So if you’d like to join us please register today.

REGISTER TODAY

£7030 donated by Harburn Golf Club

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Bill & Harburn Golf Club

Bill Wright (our Chair) accepts the cheque from Allan, Dougie, Linda, & Benny (right to left)

Haemophilia Scotland is immensely grateful to Benny, Dougie and Allan and all the members of Harburn Golf Club, after their recent amazing donation of £7030 towards the planned Contaminated Blood Memorial. We are delighted at this continued generosity from the Club and its’ members towards this fund. It sounds like the Texas Scramble for the golfers and the celebratory evening dinner was enjoyed by all.

We would also like to extend particular thanks to the many local businesses in West Calder who were so generous with sponsorship and support for the event; as were many other golf clubs across the country who donated prizes.

Huge thanks once again to Harburn Golf Club – this has really helped take the Contaminated Blood Memorial Fund much further forward towards its goal.

Today is World Haemophilia Day

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WHD2018_edited

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

 

See you at Landmark on July 14!

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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!

>>BOOK YOUR PLACE NOW

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

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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. 

DEADLINE TO APPLY: APRIL 20

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 hello@haemophilia.scot 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 alex@haemophilia.scot. 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 www.tallships.org

Langstaff Inquiry launches website and consultation on Terms of Reference

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The statutory Public Inquiry into infected blood and blood products, under Sir Brian Langstaff, has just launched it’s website at www.infectedbloodinquiry.org.uk

The site gives some high level details about the Inquiry and a little more information about Sir Brian Langstaff.  However, the main content at the moment is a consultation on the Terms of Reference for the Inquiry.  The consultation was launched at the end of yesterday and runs until 26 April.

On the Inquiry website you will find,

Haemophilia Scotland will be working with independent campaigners in Scotland and the Scottish Infected Blood Forum (SIBF) to make a consultation response highlighting the Scottish dimensions to the consultation questions.  As well as using the Scottish Position Paper we published in October, we will be holding a joint members meeting so that everyone in Scotland can discuss the issues raised by the Inquiry consultation together.  We will publicise the details of that meeting as soon as it is confirmed.

 

Glasgow Centre’s “Girlie Day Out” a huge success

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Glasgow CCC held the “Girlie Day Out” event on Saturday (24th February) in the St Mungo Museum.  It was a great afternoon organised for female patients, carers of people with bleeding disorders and any of their family members.

The day was well attended and started with a bit of lunch and some very short informative discussions around:

  • Women and girls bleeding problems (Dr Catherine Bagot, Consultant Haematologist, Glasgow)
  • Talking Red (Lynn Wild, Talking Red Ambassador)
  • Women and Girls Malawi and Kenyan Experience (Susan Warren, Honorary President Haemophilia Scotland)

Following these discussions the afternoon went on to some fun activities – manicures, henna tattooing, decoupage… finishing the day with tea, cake and bollywood dancing!!

Feedback from the event has all been positive and was evidently stacks of fun for all who attended!!!

A big thank you to all staff at the Glasgow Centre and the speakers who gave up their Saturday for this event.

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.

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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.

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.

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