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 firstname.lastname@example.org 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!
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.
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!
We had a fantastic time yesterday at the practical sewing session in Glasgow where a flurry of ideas and inspiration floated about in abundance.
For inspiration, we used the eclectic fabrics from the D’Ambrosio family, quilting magazines and the corners of our collective imaginations!
You don’t need to be an expert at quilting to participate in this collaborative project. It can really be as simple as finding a printed panel and personalising it yourself.
We’ve extended the deadline to take part in the Quilt Project to November 17, so it’s not too late to get involved!
The next practical sewing session will be held on level 3 at our office in Edinburgh on November 11, between 11:00am-2:00pm. Register for the session now.
Don’t worry if you can’t make the session as we will organise another session for Glasgow and Edinburgh in January, before the January 31 deadline.
Thank you to everyone who made the trip to come to our Deep Sea World Shark Party on Sunday. We know several families travelled for hours for the chance to talk to other families with bleeding disorders… and come face to face with the sharks!
In fact we had well over 100 people on the day and the party room was always busy with people refuelling between reptile handling and the shark tunnel. Next time it looks like we are going to need a bigger boat! A great problem to have for a rare conditions charity!
We are extremely grateful to all the staff at Deep Sea World who kept us well organised (we even had our own announcements) and gave some extremely informative talks. I know a lot of people really enjoyed their encounter with a corn snake or a bearded dragon. The staff were very impressed with how brave everyone was too.
If you’d like your photos from the day included in the slideshow above then please send them into email@example.com
On 8 April 2017 we held our first every joint meeting with the Scottish Infected Blood Forum (SIBF). The SIBF campaigns on the contaminated blood and blood products disaster, regardless of the route of transmission, in Scotland. We wanted to come together to update members of both organisations on the current situation and give everyone a chance to have their say.
Tommy Leggate from the SIBF provided information about the new Scottish Infected Blood Support Scheme (SIBSS) and some of the work that the SIBF and Haemophilia Scotland have done together in response.
Leone Bissett spoke about the proposal for a memorial to those who had passed on as a consequence of the disaster. She urged everyone to support the Contaminated Blood Memorial Fund. The memorial will be a lasting tribute to those who died as a consequence of the disaster. The location needs to be accessible preferably in Edinburgh and durable enough to be withstand any possible weathering or other damage. It needs to be physically accessible to all ages and physical capabilities and will include words to explain what happened. Individual names need not appear but there may be ways of including individual messages. The style needs to be clear that it denotes a disaster but is also +ve and forward looking. A budget of £45,000 might be needed and so far £8,500 had been raised. It was agreed that the project had full support of those attending and agreed that the small steering group who had driven the project to date should continue to lead it.
There was then a discussion about what still needs to be done and how the new scheme could be improved. This discussion identified a number of potential issues including,
- The availability of income top-up support. Grants will be reviewed in Oct.
- The availability of lower value one-off grants from the support and assistance grant fund.
- Widow(er)s could choose a nominated doctor to help their case for gaining Stage 2.
- The term ‘Sustained Viral Response’, rather than cure, is to be applied where new the viral treatments for HCV have been ‘successful’.
- More case studies were needed to feed into the clinical review. For this, survivors access to their own or loved ones medical records might be necessary.
- Some concerns / anxieties were expressed about the application process. The first port of call should be NSS. However there was concern expressed about the telephone manner of one NSS response to a query.
- The phrase on one of the forms ‘if you really need it’ was regarded as insensitive.
- It was agreed to invite NSS to the next meeting in the autumn.
- It was noted that ‘Stage 1’ widows in particular were missing out.
- Concern was also noted about the composition of the Appeals Panel.
- All agreed that a future guarantee on the level of payments as a minimum is needed. It was agreed to write to all the political parties seeking their agreement to maintain the levels of payments set so far as a minimum.
- It was noted that Stage 0s may have particular problems in securing access to the scheme due to missing medical records.
- The issue of the widows pension payments not being made to those who have remarried.
- The cross border issues caused by the requirement that people were infected in Scotland and lived in Scotland when they first applied for support.
Although not know at the time of the meeting, the BBC were working on a Panorama programme to highlight the impact of the disaster and some of the evidence of wrong doing. The programme, Contaminated Blood: The Search for the Truth, was aired on 10 May 2017 and can be viewed below. It will be available to view for 12 months if you missed it when it went out.
There are still places left for our free cruise and AGM on Saturday 20 May.
Once everyone has arrived and registered we will have some lunch together (12 noon) before holding our AGM. At the AGM you’ll hear reports of our activities and find out how we are managing our finances. It will also be your chance to elect trustees to our board.
Once the AGM is concluded we will all be going on a cruise on the SS Walter Scott out on Loch Katrine (2:30pm).
All members of all ages are very welcome. If you need help with the costs of travel then please get in touch with Dan Farthing-Sykes.
The Glasgow Haemophilia and Thrombosis Centre has plans to mark World Haemophilia Day with their usual combination of style, panache, and baking. They are cordially inviting patients to join them on the 21st April from 1pm to 3pm when their waiting room will be transformed into a vintage tea room.
Victorian dress is encouraged but not compulsory. Whatever you wear, we’d advice nothing with a tight waist as, if previous years are any guide, there will be a lot of delicious treats to try. You can let them know you are coming along on 0141 211 4840.
This year the World Federation of Hemophilia is taking the opportunity of World Haemophilia Day to bring attention to the women and girls in our community who live with a bleeding disorder or has someone in their lives who does.
World Haemophilia Day is officially on the 17 April every year but around the world many events fall in the surrounding days.