March 19th & 20th – Gathering Conference and AGM 2016
Thank you to everyone who was a part of our AGM and Gathering at Dunblane Hydro. All in all, 83 people joined us for the weekend. We had a varied programme of informative talks, practical health tips, and wellbeing sessions. We hope that the event was useful as well as a good way to meet different members of the community. We are delighted to announce that, over the next months, we will be able to host a series of webinars, so those of you who could not attend can join the discussion in a different way.
The event started with an introduction to ‘What Psychological Help is Available’ with Grainne O’Brien and Nadine Cossette. More info on Grainne and Nadine’s work will be added to our website very soon. In the meantime, please be aware that Grainne and Nadine form a very accessible (and new!) support service for people using the Edinburgh Haemophilia Centre, which can offer psychological support and talking therapies to children, young people and adults with inherited bleeding disorders and their families. Feedback so far has been very positive, and they can be reached via the Edinburgh Centre on 0131 242 1270. Stay tuned for more info in the Wire, on the webpage and an upcoming webinar!
The mid-morning sessions aimed to offer support and information relating to different elements of living with haemophilia. Physical wellbeing activities included practical sessions aimed at increasing muscle mobility and joint function after joint damage. The first session was hosted by former National Alpine Skier, John Campbell of Yoga Mix. John’s class was a great introduction to what exercise can be considered to improve mobility, and also introduced the concept of meditation to deal with chronic pain. Amanda McKenna, also of Yoga Mix, ran a specially designed restorative yoga flow session which concentrated on relaxation and muscle release to help cope with issues such as difficult menstruation. Many who attended commented that it was ‘the best yoga class they had ever been to’.
Lynne Black took us ‘back to basics’ to show how stress impacts on our daily lives, and how the early recognition of symptoms and the implementation of self-management techniques can help us to identify and cope with the physical and emotional indicators of anxiety. In other important matters relating to anxiety, June Ward and Grainne O’Brien talked on basic techniques to assist successful venepuncture, explored techniques which may help avoid needle phobia, and gave practical advice on options for treatment for those who are needle phobic.
Robert Givern joined us from The Scottish Government to discuss The Contaminated Blood Financial Support Review. This followed the announcement, on Friday, that the Scottish Government has accepted the key financial recommendations of the Independent Financial Review group at an estimated cost of £20million. The recommendations were co-developed as part of a Scottish review process, and more details can be found here: http://haemophilia.scot/advocacy/infected-blood-scottish-financial-support-review-group/
Sean Lloyd joined us to discuss physiotherapy support. Sean reported that he thoroughly enjoyed the session and felt that it was highly beneficial in raising awareness of the importance of physiotherapy. We all hope your feedback can support the business plan to have more physiotherapy input into the lives of haemophiliacs.
The AGM was well attended, and a detailed report on recent activities was given by our Chair, Bill Wright. Bill thanked all the volunteers and staff who make the work of Haemophilia Scotland possible. Dan Farthing-Sykes gave the financial report covering the 1st November 2014 – 31st May 2015 period of the old voluntary association. Indicative constitutional resolutions were passed to recognise the international dimension of our work, especially the Malawi Diagnostic Project, these aspects will need to be ratified again, once approval has been granted by the Office of the Scottish Charities Regulator (OSCR). The meeting finished with the election of trustees. Thanks were given to Ken and Jill Peacock who left the Board this year. Bill Wright was re-elected and the board was strengthened by the election of Dan Hewins, Lynne Black, and Heather MacLeod.
In the afternoon, during a very popular session, we explored dentistry with Andrew Brewer and Tom Ferris. Andrew started the session by talking on The Role and Importance of Dentistry and Treatment to Our Community (you can find Andrew’s leaflet on how to plan you dental treatment here:http://haemophilia.scot/information/living-with-a-bleeding-disorder/dentistry/).Tom Ferris discussed the Recent Changes in Dental Services, and the implications of charging for our community. During a parallel session, Anke Roexe and Patricia Osborne ran a highly informative and lively session, with Patricia talking on How the Brittle Bones Society work with rare conditions, and Anke detailing the plans for our Bleeding Network.
The evening pace picked up with music by The Andy Gunn Band. Star dancers Dan and Bill cut some moves on the dancefloor, others used more creative spaces for dancing… It was a great night and our thanks go to the band for entertainment, in return, we hope you enjoyed our floor show!
Sunday morning, with some bleary eyes, we held our market place discussion featuring introduction to The Diagnose Malawi Project, The Contaminated Blood Memorial Plan, and Events and Support, with Bill Wright, Susan Warren, Dan Farthing-Sykes and Emma Black. This gave us an excellent chance to get to know more about how you would like to become involved in fundraising and inputting into the events programme. The livelier part the discussion was captured by Edinburgh Sketcher, Mark Kirkham.
During our last tea and coffee break, we chilled out with Catherine Strang, of The Whole of You. Catherine introduced us to the concept of mindfulness, and guided us through some practical techniques to calm the mind.
Our last session was delivered by Dan Hart, who talked on understanding inhibitor risks. We were really impressed with the level of communication and the amount of questions asked during this session. Similarly, Dan expressed how very valuable and insightful the opportunity to contribute to our event had been to him. It is not often that a session over runs for 45 minutes, and the audience leave still enthused and engaged in the subject topic! We hope to repeat this session as one of our webinars.
Thank you to all attendees, helpers, speakers, facilitators, musicians, crèche and Dunblane Hydro staff – the weekend was amazing due to you all!