The European Haemophilia Consortium (EHC) has announced that the scientific journal Haemophilia has published the results of their 2014 ‘Survey of coagulation factor concentrates tender and procurement procedures in 38 European countries.’
The preliminary results of the survey were presented during a World Haemophilia Day event organised by the EHC in Dublin on 16 April which Haemophilia Scotland attended.
The key conclusion of the survey and article is that,
The involvement of both clinicians and patient organizations greatly improves the outcome of a tender or procurement process, as does the presence of a legal framework that governs the process.
This significantly strengthens the calls Haemophilia Scotland has been making for Scottish patients to be involved in all tendering and procurement decisions. We believe this is also a key lesson from the Penrose Inquiry evidence.
Sabrina is one of our fantastic supporters. She took some really great photos at Walk RED Malawi and has kindly sent them in.
If you weren’t able to come to the walk and haven’t donated yet it isn’t too late. Just text FACTOR followed by the amount you’d like to donate (for example, FACTOR £10) to 70660.
All the money we raise will be spent supporting our friends at Haemophilia Malawi. They are a brand new patient group in Malawi and are keen to campaign for better diagnosis and treatments. With your support we can really help them make a difference.
A week tomorrow Haemophilia Scotland is pushing the boat out with three great events for our members on Saturday 30th of May.
In the from 10:30 in the morning there is the choice.
At the Fife Leisure Park we are having a Children and Families Pirate Golf trip to Adventure Island. This is a chance for families affected by bleeding disorders in Scotland to come together and spend a bit more time getting to know one another.
Older Adults Option
Meanwhile, down the road at the Vine Venue we are holding an event for everyone who wants to know a bit more about the new treatments for people with Hepatitis C and how to go about getting them.
All together for the AGM
After both events we’ll be asking everyone to come together at the Vine Venue for our AGM from 2:30pm. As well as reporting on what we have achieved we need your help to adopt a new constitution and to elect new boards of trustees.
Time and time again our members tell us about the amazing support they get from their nurses in Scotland’s Haemophilia Centres.
Many of our members talk about their Haemophilia Nurses as part of their family. Time and time again the support from fantastic Haemophilia Nurses all over Scotland goes well above and beyond the call of duty.
We know that everyone who works in Scotland’s Haemophilia Centres deserve much more appreciation than they get. They deliver some of the best Haemophilia Services in the world. Sadly, it’s in the nature of things that too often they only hear from us all when there are problems. Well, we wanted to use International Nurses Day to redress the balance a bit. So… all together now…
Haemophilia Scotland member, Daniel McGuigan’s band, The Modests, are playing in The Hard Rock Cafe, Edinburgh this Friday this Friday from 10pm.
They are a ‘Psychedelic’ rock and roll band described as “Pixies meets The Doors…” and are based in Glasgow so this is a great chance to see them over on the East.
We’ve put a clip of their recent appearance on STV Glasgow playing Geneva on our Facebook Page. For those of you who haven’t liked us on Facebook yet we thought we’d share a different track, Completely Twisted, in the clip above.
Derek Forbes of Simple Minds & Big Country has been reported as describing The Modests as ‘the next big thing to happen in Scottish music scene.’ So this is your chance to see them before they are famous.
Musical talent seems to be a associated with the bleeding disorders in Scotland. Many of you will already have heard Andy Gunn play. We are wondering how many more musical talents we have in community?
He did it! By cycling 52.937km (that’s 32.9miles) in just one hour Alex Dowsett has inspired people with bleeding disorders all over the world. We think is it the first time such a prestigious world record has been held by someone with a bleeding disorder. We were delighted to have representatives from Haemophilia Scotland there on the day cheering him on.
By smashing the record by old world record by an amazing 446 meters Alex has confirmed his status as a world class cyclist.
As well as breaking records, Alex was keen to use the record as a way of breaking preconceptions about bleeding disorders and raising awareness. When he won a gold medal at the 2014 Commonwealth Games in Glasgow we had lots of calls from young people with bleeding disorders and their parents. It gave a lot of people hope that, with careful management and the right treatment, their bleeding disorder would not necessarily hold them back. We can only imagine what effect the world record is going to have!
In the video (above), Alex talks about how his Haemophilia was instrumental in him taking up cycling originally. He also thanks his parents how they helped him manage his Haemophilia.
All the photographs used in the production of the video are copyright of Chris Keller-Jackson of www.crankphoto.co.uk.
Photograph copyright of Chris Keller-Jackson, http://www.crankphoto.co.uk/
Today is the big day! Haemophilia Hero and elite cyclist, Alex Dowsett, is attempting to make history.
If his #PerfectHour attempt is successful it will be the first time such a prestigious world record has been held by someone with a bleeding disorder.
When Alex won a Gold Medal at the Commonwealth Games lots of families got in touch with Haemophilia Scotland to say how much it had changed how they thought about their child’s bleeding disorder. Alex’s achievements offer so much hope to families all over Scotland.
Everyone at Haemophilia Scotland is wishing Alex the best of luck. Susan and Lynn, from our Board of Trustees, have travelled to Manchester to cheer him on. If you can’t travel to Manchester then you can watch the action on British Eurosport 2 / Eurosport 2 from 12:45pm BST /1:45pm or online via the Eurosport Player.
Modern treatment for Haemophilia makes attempts like today’s possible. It is important to remember, however, that many older people with Haemophilia have serious joint damage. This causes chronic pain and seriously limits mobility for many. While many of the older guys will some of the loudest voices cheering Alex on, it is important to remember that the new treatments can’t undo historic damage.