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.
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!
Thanks to everyone who came to our day out at Crieff Hydro. It was a wonderful, action packed day! We started by launching The Miles for Haemophilia campaign in Scotland with an inspirational talk by Alex Dowsett. Alex told us of his journey to being a record breaking cyclist, how haemophilia led him to cycling and how he manages his condition. It was great to hear his talk but also to get to chat to him in person too.
During his talk, Alex stressed how important keeping active safely is for all our community and spoke of the value of bringing us together to support and encourage each other.
After lunch, we had an adventure at the brilliant Action Glen. We tried out a range of activities which kept us moving on a cold but beautiful day. Amazing views could be seen by everyone who braved the zipwire.
The climbing wall looked testing but we met challenge!
We also had time for, possibly, the friendliest game of lasertag ever.
Although we did get competitive too…
There was also the chance to learn bushcraft survival skills, including fire lighting.
(which was greatly helped along by toasted marshmallows and biscuits!).
Thank you all for an amazing day, special thanks to Elspeth for taking our photos, but most of all to Pfizer for the funding this event and for bringing Alex to us!
We are delighted that Alex Dowsett will be our lunchtime speaker at this weekend’s “Try Something New” event at Crieff Hydro. If you have already registered you can see the final schedule for the day here.
Alex is an inspiration to people with Haemophilia all over the world. Despite his condition he has been able to climb to the top of the world of cycling claiming many championship titles and holding a string of records.
He will be speaking about his experience of living with Haemophilia and how he has gone on to achieve to much. His visit makes the launch of this year’s Miles for Haemophilia campaign. The campaign asks people to challenge themselves while raising awareness, and sometimes money, for haemophilia.
There are lots of ways of getting involved in the Miles for Haemophilia campaign.
You can find our more about Alex Dowsett and his work to inspire younger people with bleeding disorders the website of the Little Bleeders charity which he founded. You can also follow him on Twitter.
Yesterday the cycling press was reporting that Alex is considering an attempt to regain his #PerfectHour world record. See our video of the last time he set the record.
The Try Something New Event and Miles for Haemophilia are both supported by @Pfizer.
Join us for an instructor led climbing wall session at Transition Extreme Aberdeen on the 8th of October.
Transition Extreme is a first-class facility, recognised by the Mountaineering Council of Scotland as a regional centre of excellence. Its amazing facilities provide the perfect introduction to indoor climbing. It’s a brilliant combination of exercise, psychological challenge and chance to build lasting friendships.
This is part of a new series of events running which are aimed at to bringing teens and young adults together. But everyone is welcome at this event for both the lunch and climb, and we would love to see you there! Looks like great fun! All costs for lunch and the climbing sessions will be covered, so this event will be free of charge. Assistance with travel costs are available on request.
There will be instructors with us for the whole session, so this will be suitable for all levels. We will start with lunch at 1pm in the cafe, and will be on the climbing wall from 2-3:30pm. It is rare for injury to happen at the climbing wall, but we will be accompanied by fantastic staff of the Aberdeen centre on the day. Should be great fun!!
If you have any questions or would like more info, please contact Emma on 0131 281 0857 or firstname.lastname@example.org