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.
Many Haemophilia Scotland members got a chance to meet Alex Dowsett, the record beating elite cyclist who also happens to have Haemophilia, at our recent Try Something Different Day at Crieff Hydro.
He is the face of the Miles for Haemophilia Campaign which is raising awareness of bleeding disorders and the benefits of staying active for those that have one.
As part of the campaigning he will be doing a live Q&A on Twitter from 3.45 – 4.45pm. All you need to do to take part is tweet your questions including @alexdowsett and #HaemophiliaChallengesMe. If you have space to include us at @HaemophiliaScot too that would be great!
If you aren’t on Twitter but would like to take part, it only takes a few seconds to get started. Please make us one the first people you follow too.
Sadly, the Q&A had to be cancelled. However, it is going to be reorganised an we will post new details as soon as we have them.
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 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/
Rory gave Jack a run for his money when they had a race.
On Saturday families from all over Scotland came to the Haemophilia Scotland Swimming Extravaganza. We were pleased to have so many families involved in our Mentoring Project together again.
There were videos to watch, faces painted, and swimming bags to decorate too. Our guest of honour for the day was Jack Bridge. Jack is 21 and doesn’t let having severe haemophilia A hold him back. He is the the holder of 8x British swimming records and competed at the London 2012 Paralympic Games.
Each family got some one to one time with Jack in the pool to talk about everything from swimming and training techniques to the importance of sticking to your treatment regime.
We were very pleased that Jenna Reid from the Edinburgh Haemophilia Centre joined us for the day too. She showed the Haemophilia Get Fit & Active video and was on hand to answer any questions.
The film above was produced by Jenna Reid, Clinical Specialist Physiotherapist, and the team at the Edinburgh Haemophilia and Thrombosis Comprehensive Care Centre. The multidisciplinary team, including a patient and a parent, explain the reasons why staying fit and physically active are an essential part of managing Haemophilia and other inherited bleeding disorders.
Benefits of staying fit and active include,
- Strong and healthy muscles
- Interacting with friends
- Good balance
- Can help prevent bleeds
- The right exercises can also help you recover from a bleed
It can really help to find a suitable way of staying fit that you enjoy. It is particularity important to make sure you warm up before any physical activity.
Remember, it is essential that you talk to your own Haemophilia Team before changing the management of your Haemophilia or taking up any new physical activities. They can also give advice about when it the best time to take your treatment to give you good cover while you are exercising.
Reproduced with thanks to the Edinburgh Haemophilia and Thrombosis Comprehensive Care Center.