HOME DELIVERY UPDATE
As the red weather warning has been extended, LloydsParmacy Clinical Homecare have had to make the decision to have no distribution in Scotland today. They will continue to monitor the situation and hope to resume service tomorrow (Friday) and also into Saturday. They are very grateful for everyone’s patience. They will contact you directly if your delivery will be affected.
The Haemophilia Scotland office is closed today but staff will be working from home. If you’d like to get in touch please use email if you can. As usual, all medical enquiries should be directed to your Haemophilia Centre.
We are all extremely grateful to the dedicated staff of the Haemophilia Centres, many of whom have battled into work today. We’ve heard some Center staff didn’t even get home last night, choosing instead to stay in local hotels to make sure their Centre was staffed today.
More information about the travel disruption, including advice on whether and how to travel can be found on the Traffic Scotland website.
Thank you to all who turned out to our Family Day at Hampden Park on Saturday!
There were around 70 people who attended and it was an excellent opportunity for old friends to come together and for new friends to be made.
We were given a tour of the 52,063-seat stadium and got to explore the Hall of Fame and Football Museum. FIFA on the Xbox proved to be a popular museum exhibit!
Following the excitement of the museum, we went upstairs to the Millenium Suite and got to enjoy the panoramic views of the stadium over a tasty lunch.
While on the tour, we were given the chance to kick a ball into a goal and have the speed recorded. Teamophilia Scotland has some strong kickers with speeds in excess of 45km/hr recorded!
If you were unable to make it on Saturday, take a look at our Events calendar for our upcoming events. We hope to see you at one of our events soon!
Thank you to those who joined us on Saturday for afternoon tea at the Carlton George Hotel in Glasgow. It was a brilliant opportunity to have a good catch up, talk about our panels for the Quilt Project, chat about the Women’s Booth, all over some mouth-watering snacks and litres of tea.
We were presented with some sandwiches, scones and an assortment of very sweet desserts which all went down a treat!
The “before” photo. We did a great job devouring the treats!
So many delectable treats to choose from!
The atmosphere was abounding in positivity and it was immensely encouraging and heartening to hear how everyone’s panels were coming along for the Quilt Project and to see how excited everyone is for the Women’s Booth.
Whilst at the afternoon tea, it was announced that the Glasgow Centre is going to donate £1,000 to the Women’s Booth at Congress. We are blown away by the kindness and generosity of the Glasgow Centre and are hugely thankful and appreciative of their support. This is a significant year with Congress coming to Glasgow and this donation will make a substantial difference. Thank you, Glasgow Centre!
Today, representatives of both Haemophilia Scotland and the Scottish Infected Blood Forum will be in London to attend a meeting between people affected by contaminated blood and blood products and the former Bishop of Liverpool, James Jones. We will be expressing the views of our members from our recent joint campaign meeting and have jointly issued the short statement below.
In our united view, the UK Public Inquiry should be a statutory Inquiry under the 2005 Inquiries Act. It should be conducted by a panel rather than a Chair and they should be appointed as soon as possible with appropriate input from affected people. The wrong Chair and Panel is worse than no Chair and Panel. There must be Scottish Core Participants and Scottish legal representation.
We want people to make their own decision about whether or not to attend the meeting with the Bishop. The Scottish charities are attending because we want to take opportunities to engage and put forward the Scottish perspective. Therefore, we are not boycott the meeting or planning to walk out of it. We take the Bishop at his word and believe him when he is says that he is making a genuine attempt to help.
Haemophilia Scotland and the Scottish Infected Blood Forum are both currently working with Thompsons Solicitors.
We continue to call for the Department of Health to step aside in favour of another Department taking the lead establishing a UK Inquiry.
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.
Thank you to everyone who joined us for the Extraordinary General Meeting (EGM) and Walk RED Malawi 2016 on Sunday.
Those who attend the EGM, and those who submitted proxy votes, confirmed the vote taken at the AGM. We now acknowledge our international work in our charitable objectives.
The walk itself went well too. Nobody needed a Haemophilia Scotland umbrella and everyone looked great all dressed in red.
As we walked along we talked about what is already being achieved in Malawi through our Malawi Diagnosis Project. Our fantastic volunteers have just returned from training over 350 healthcare professional in techniques for spotting potential bleeding disorders patients. Thanks to the project, they now know about the new Haemophilia Clinics which are opening in Malawi. The patients they refer will have access to laboratory tests and treatment.
You can make a donation to support this extremely important work online or by text.
We’ve set up a campaign on Just Giving so that you know that all of the money you donate will go to the project. You can also tell us to collect the gift aid for your donation.
To donate three pounds by text send MALA31 £3 to 70070. If you’d like to give more then just change the amount. For example, you can donate five pounds by texting MALA31 £5 to 70070.
Thank you for your support. The money you donate really does go a long way on the ground in Malawi.