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.
Fantastic work Mark! Well done and thank you!
Mark Scott has had some fantastic coverage in the Blairgowrie Advertiser.
He raised nearly £130 for our Contaminated Blood Memorial Fund as part a fantastic TEAMophilia effort at the Edinburgh Marathon.
Mark’s JustGiving page is still live if you’d like to give and help him get raise over £130.
Thank you Mark, the other runner and everyone who has given so far.
Find our more about fundraising for Haemophilia Scotland here.
Today, on International Nurses Day, we wanted to thank all the amazing nurses who work in Scottish Haemophilia Centres.
We are extremely fortunate in Scotland to have extremely dedicated nurses, many of whom have many years of experience in Haemophilia. Our members often tell us that their nurse is like a member of the family and that they are deeply grateful for the support and care they receive.
As a charity, we are also very grateful to the support we’ve received in setting up Haemophilia Scotland, running our events, and in our wider work. So many Scottish Haemophilia Nurses go above and beyond on a regular basis to provide the best possible treatment and care. They are extremely active in working with us and other healthcare professionals, through initiatives like the new Scottish Inherited Bleeding Disorders Network, to drive continuous improvement in Scottish care. Specialist nursing is vital to providing the comprehensive care package that is the gold standard in the treatment of bleeding disorders.
The theme for this year is Nurses: A force for change: Improving health systems’ resilience.
International Council of Nursing (ICN) President, Dr Judith Shamian, has said,
As the single largest group of health professionals, with a presence in all settings, nurses can make an enormous impact on the resilience of health systems. By promoting the nursing voice, we can help guide improvements in the quality of health service delivery and inform health systems strengthening.
Questionnaire responses are flooding back through the post and online.
Thank you to everyone who has already been involved in the Scottish Contaminated Blood Financial Support Review Group consultation.
We’ve now had five extremely interesting meetings in Edinburgh, Inverness, Dundee, Glasgow and Aberdeen. In addition, we are very please with the number of questionnaires returned, by post and online. Because some people received the letter late, and because of the Bank Holiday, any returns that arrive in the next few days will still be included. We have also had one-to-one conversations with several people and have some more scheduled over the coming week.
It is a great testament to the resilience of those who have been affected by this disaster that so many have been able to respond to the consultation so quickly. Everyone on the group is extremely grateful for the effort everyone has put into letting us have their views.
We’d also like to thank our friends from south of the border who have resisted the understandable urge to try and influence the process in Scotland. We deeply sympathize with the frustration of not having a similar process running over the summer in other parts of the UK. However, nobody wants to cause the delay which would inevitably result in the Scottish consultation seeming to be compromised. There is a high awareness that some of those affected are in extremely urgent need of support as soon as possible. It is great to have the support of the wider community on this.
If you or your loved one was infected in Scotland, or you live in Scotland, then you are entitled to take part in the consultation. If that applies to you, and you haven’t received your letter, please contact Dan Farthing-Sykes at Haemophilia Scotland (0131 524 7286 or firstname.lastname@example.org) for a copy of the questionnaire. Alternatively, contact details for Philip Dolan of the Scottish Infected Blood Forum, who can also supply copies, can be found at http://sibf.ninedesignstudio.co.uk/.
This is the amazing run that one of our Trustees, Nikki Gandy, completed for Mile for Haemophilia. Go Nikki!
As you probably know, Alex Dowsett is an elite cyclist who also happens to have Haemophilia. He does an amazing job raising awareness of Haemophilia and inspiring people with bleeding disorders to be as active as they can be.
He has been the figurehead for the Pfizer Ltd awareness raising campaign, Miles for Haemophilia. We are proud to have been part of the campaign and want to thank everyone who took part, Together we have smashed last years target! Over 17,000 miles were pledged this year by 3,651 of you! Thank you for such an amazing effort. You can see Alex’s message from the Tour de France at the top of this page.
We are particularly pleased that 35% of those taking part had no link to Haemophilia. This shows that all the hard work has really helped reach out to the wider public.
Well done everyone!