CEO Update | May 29, 2020

May 29th, 2020

 

Dental Care

In this weeks E Zine, we include an update by Laura Parkinson, Dental Hospital on the use of telemedicine in Dentistry for people with bleeding disorders during the pandemic. Laura has been one of Alison Dougall’s key team members at the NCC dental clinics for many years. The dental service has really embraced telemedicine. At present, they are also beginning to see patients back at the NCC for urgent dental treatment. A limiting factor in the number of people they can see is the need to decontaminate the dental treatment suite between each patient attending. Because dental treatment involves aerosol creation, in the current time of pandemic, there would normally be a requirement for a one-hour decontamination period between each person seen. This would severely limit the number of people they could see.

There is a new fogging machine which dispenses a chemical called hypochlorous acid to decontaminate the room from viruses, including Covid-19. I attended a demonstration of this technology at the Dublin Dental Hospital this week. This process takes one to two minutes so they should be able to see patients with an interval of no more than five minutes. This will greatly assist them to see more people with bleeding disorders. We greatly appreciate the innovative work of the dental team at this difficult time and fully support this initiative. The Society will be purchasing a fogging machine for the dental suite at the NCC.

Dublin Dental Hospital Facilities Manager Jimmy Swan decontaminates a room with the Fogging Machine

Laura Parkinson and Alison Dougall with a fogging machine

Twinning with Jordan

The Society have a Twinning relationship with the Jordan Society for Haemophilia and Thalassemia. We have committed to assisting them in capacity building in defined areas such as publications, event planning, Governance and Strategic planning. Obviously, we cannot travel to Jordan at present. I was very pleased this week to participate in a two-hour working session with the leaders and 12 additional volunteers from the Society in Jordan by Zoom. The topic was production and design of digital publications and electronic newsletters. Our Publications Editor, Barry Healy provided the expertise and gave a very much appreciated presentation during the call. The call was also attended by Rana Saifi, World Federation of Haemophilia Director for the Middle East. This was the first in a series of such calls

 

Quality of life survey

The Irish Haemophilia Society for the past 2 years have been carrying out quality of life surveys in people with haemophilia. Currently we are sending out this quality of life PROBE survey to all of our adult members with FVIII & FIX deficiency. The surveys returned are anonymised and the collective results from all the surveys provides us with very useful information as we continue our mission of constantly advocating for better treatment or care for people with haemophilia. They also allow us to see the general impact of the introduction of new treatments. (For example, following our analysis of survey results last year, we were able to demonstrate that the extended half-life factor concentrates which had been introduced in 2018 and 2019 had a significant beneficial impact on quality of life)

We are aiming to systematically record our members lived experience and quality of life with haemophilia for past, current and new treatment regimens. We plan to monitor and collect data for a number of years, in order to continue to build support for access to the safest, most efficacious products for the treatment of haemophilia for people in Ireland. Your support, by taking part in this research survey may be paramount to successful advocacy in the future.

Brian O’Mahony
Chief Executive

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