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.
Today is International Day of the Girl Child and this year’s theme is: EmPOWER Girls: Before, during and after crises.
“Every 10 minutes, somewhere in the world, an adolescent girl dies as a result of violence. In humanitarian emergencies, gender-based violence often increases, subjecting girls to sexual and physical violence, child marriage, exploitation and trafficking. Adolescent girls in conflict zones are 90 per cent more likely to be out of school when compared to girls in conflict-free countries, compromising their future prospects for work and financial independence as adults.” 1
These horrifying statistics paint a bleak picture for women and girls around the world. There are international efforts to fight for the rights of women and girls and improve their situation. Here at Haemophilia Scotland, we have a women’s group that meets regularly. It is an empowering forum for women to get together and discuss the issues affecting them and offers a space for women to support each other.
The Women’s Group recently launched a Quilt Project, which is a collaborative, worldwide effort where women with a bleeding disorder, or people who know women with a bleeding disorder, are invited to sew a panel which represents how bleeding disorders have affected their lives. Collectively, these panels will make up a special and uniquely-designed quilt that will be something tangible that represents how the Women with Bleeding Disorders community feels. You can register to take part in the quilt project here.
We will continue to make every effort to support and empower the women in our community.
We are extremely grateful for a big box of fantastic fabrics which will be used as part of the quilting project being launched by our Women’s Group on the 24th of September.
It was donated by the good people at John Lewis in Glasgow and will really get the project off to a flying start.
If you’d like to join us at the Scottish Quilt Championships and for afternoon tea then please register today.
In the run up to our AGM this Saturday we wanted to publish the final report of the Needs Assessment we conducted in partnership with the Scottish Inherited Bleeding Disorders Network. We are grateful to The Lines Between who independently carried out the assessment. Thank you to everyone who took part by completing the survey to have their say.
There report highlighted that there is unmet demand for physiotherapy and psychosocial services. The services already offered in these fields are greatly appreciated but more provision is need. Some of the other key findings from the report were,
- Some people with less severe bleeding disorders suffer anxiety about how to manage their condition.
- Over half of people have additional social, emotional, or practical support needs.
- People are experiencing stigma and discrimination at work.
- While it is understood that activity is important, activity levels are low.
- People wanted more local and specific support services.
The top three priorities for the future were,
- Reducing the number of bleeds
- Finding a cure
- Reducing the frequency of infusions
Read the Report
You can download a copy here or by signing up for a free account on Issuu.
We formally launched the report on the 15th of March and then presented it to MSPs, patients, and healthcare professionals at a reception at the Scottish Parliament.
Photos from the Scottish Parliament Reception
Photos courtesy of Elspeth Parsons of The Lines Between.
We are grateful to Baxalta (a Shire company) for the unrestricted grant which made the Scottish Needs Assessment possible.
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!
We are delighted to announce that our AGM and Gathering will be held at the beautiful Hilton Dunblane Hydro on 19th & 20th March 2016. We have a fantastic range of topics, wellbeing activities and entertainment from the Andy Gunn Band – all free of charge to members (and membership is free)! For more information and booking details, please see: http://haemophilia.scot/support/events/gathering-and-agm-2016/
This short video from the World Federation of Hemophilia (WFH) highlights some important issues.
- Women with bleeding disorders experience symptoms, including but not just, heavy menstral bleeding.
- Those symptoms lead to a reduced quality of life in all eight of the key measures.
- The importance of Factor replacement treatment.