Irish Haemophilia Society E-zine: May 29, 2020

Irish Haemophilia Society eZine: May 22, 2020
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Update from I.H.S. CEO
May 29, 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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Upcoming Webinars

Continuing with our series of Webinars and Q&A Sessions, we have further meetings coming up on;
Tuesday, June 3rd @ 11am – Exercise and Physical Activity for Children with Paula Loughnane, Senior Physiotherapist at CHI Crumlin

Friday, June 5th @ 11am – an Update on the iPATH Research project with Professor James O'Donnell

Wednesday, June 10th @ 11am - Update on New Children’s Hospital with Eilish Hardiman, CEO

To join us for any of these meeting, please use the link & meeting ID below:

Join Zoom Meeting
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Meeting ID: 905 221 0070

If you plan to join, we would appreciate it if you could drop Barry an email at [email protected] (mailto:[email protected]) to give us an idea of numbers.

FYI: We shall be recording the audio and slides from some Webinars to make them available to those that cannot attend. Please be assured that only audio from speaker's presentations and not Q&As will be recorded. Attendees will not be identifiable on the recordings.

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Tele-Dentistry in 2020

I have travelled to Dublin from Laois every day for 15 years to work as a dental nurse at the Dublin Dental Hospital and NCC. If someone had told me this time last year that it was possible to do anything useful in dentistry without having the patient in the chair or even in the building or do that journey every day by train I would have scoffed. But over the last 3 months I have learned that tele dentistry has been a crucial part of assuring our patients wellbeing at this difficult time

Prior to the Covid pandemic, to me the term ‘tele dentistry’ probably meant searching the web for information that might help patients or for perhaps partaking in online continuing education. I could never have imagined that it would become the cornerstone of our dental services for patients with bleeding disorders and that we would have an urgent need to adopt it almost overnight.

I am not so very fond of change if I am honest, but I learned that several dentists had died in Spain and Italy from contact with asymptomatic patients during routine dental treatment as it’s impossible to social distance doing dental work and due to the high concentration of virus in saliva. However, when the New York Times listed dental nurses as the highest risk of all professions due to our additional role in decontamination in the dental surgery between patients I realised that I had to embrace the redesign of dental services for a few months and the NCC formal tele dentistry service was borne .

I learned that the term “tele dentistry” was not a new concept and was first used in 1997, when it was defined as “… the practice of using video-conferencing and other communication technologies to diagnose and provide advice about treatment over a distance’

My initial job was to offer patients who had had their dental appointments cancelled, the opportunity to have a dental consultation with Dr Alison Dougall either by phone or by video. We were advantaged over many other countries or centres relying on tele dentistry because of The Lighthouse Project* and the availability and easy access to a confidential electronic record. This meant we had access to everything we required to give advice and record careful clinical notes and crucially we have been able to carry out those consultations every day from various locations offsite, even when we were not due to be at the centre. This also allowed us to make multi- disciplinary decisions together with the haematologists and specialist nurses and plan care…sometimes each working from a variety of locations.
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I always enjoy speaking to patients, many of whom I have known for years and my role was to assure all patients that there was a service available should they have an urgent problem and answer any queries they had about looking after their teeth or about preparing for an online consultation. I also was the first responder to any dental emergency calls that came into the centre. Before any booked emergency consultations via tele dentistry patients were asked to photograph any dental problems and send them to us and to this day we continue to be blown away by the quality of photographs that have been possible using a mobile cell phone. This is a practice we will continue with long after the pandemic is over. We have realised that this is a really valuable way to plan in advance what is likely to need to happen – whether a tooth can be saved or whether it needs to come out, whether someone has an abscess and needs antibiotics or whether a persistent ulcer was something to worry about…this
has opened new horizons.

So was the tele dentistry service useful? I can say a resounding yes. During the first 6-week period, 89 telephone or video consultations were conducted with patients with bleeding disorders from all over Ireland. 18 patients recorded pain scores of 7 or above with half of those reporting maximum scores of 10. 26 people indicated their dental problems were impacting significantly on relationship, sleep, nutrition or mood. 29 scripts were issued for patients who were not managing their dental pain adequately. 7 patients were tutored on self-placement of temporary fillings using kits from local pharmacies. Dental extractions were arranged for 22 patients. These were not all done at the NCC. For the first time we undertook remote ‘tele mentoring’ of dentists who were nervous or unsure of how best to manage a patient with bleeding disorder. We literally talked them through all of the required details so they were confident to proceed. There was no incidence of bleeding from the mouth requiring
admission during the 6 weeks of our data collection. This is again something that we can continue in future for people living in remote areas of Ireland.

So, in conclusion I can say that during the pandemic dental problems impacted on quality of life. We provided care for people with bleeding disorders that we had never ever met in the last 10- years of working, in fact regular dental patients had very few problems. We have realised that tele-dentistry enabled urgent dental problems to be identified and addressed efficiently, effectively and safely using a patient centred team approach. Tele-dentistry has the possibility to reduce many barriers to care and although it can never replace a face to face treatment, it has a future in our service, and I am all for it.

Out challenge now is about how we start to slowly open up dental services. Dentistry is going to look a bit different for the time being. We have even more personal protective equipment than before, with upgraded masks and visors. We have to be careful with anything that produces an aerosol so are still very limited in our ability to provide fillings and cleanings. But slowly, slowly, the new normal of dentistry will emerge and risks will be reduced and we look forward to seeing you all soon should you need us…be phone, by video and soon enough we hope in person.

Laura Parkinson

* The Lighthouse project refers to the information technology project for Haemophilia in Ireland. It included the new electronic patient record system and a patient portal


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Twinning

As Brian mentioned in his piece, the I.H.S. has a twinning relationship with the Jordan Society for Haemophilia and Thalassemia. As part of the twinning programme we are committed to assisting them in capacity building in areas such as event planning, Governance and Strategic Planning, and Publications.

As travelling to Jordan isn't possible at present, we did a two hour Zoom session on the topic on Digital Newsletter & Publications. It was facilitated by Rana Saifi, World Federation of Haemophilia Director for the Middle East and attended by leaders and volunteers from the society. The presentation provided some practical advice and areas to consider with regard publications, design and content.

It was a very productive meeting; they were a receptive audience and enthusiastic for developing their own communications.I must say I enjoyed it, and it was an encouraging start to my involvement in the twinning programme and I look forward to working with the society in Jordan in the future.

Barry Healy

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Reminder: NCC Physio Team Survey

The physiotherapy team in the National Coagulation Centre (NCC) in St James's Hospital, is doing a survey of people with severe haemophilia that attend the National Coagluation Centre.

For those of you who have received it, we'd like to ask members to please complete and return the survey.

Your feedback will inform their annual physiotherapy and Haemophilia Joint Health Score (HJHS) assessment service for people with severe haemophilia and the info will help to develop services to better fit the needs and demands of their service users.

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Barretstown Summer Camps

As they are unable to run their traditional summer camps this year, Barretstown have developed a new interactive programme which will bring the magic of camp straight to the camper’s home through our NEW private online streaming service, Barretstown Live.

They have built a Studio in Barretstown from where the team will be live streaming interactive activities and fun.

For more information on Barretstown LIVE, please contact [email protected] (mailto:[email protected])

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Annual Report 2019

Our Annual Report 2019 is available now with overviews on our activities, events, support and finance, and more from last year.

A hard copy will be be printed and mailed to member's in the future but for now, it's digital only.

To read or download, pleaseclick here ([link removed]) .

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Hyde Square Apartments

Just to remind you all, that the Hyde Square apartments will continue to be available for members and bookings will be taken as normal.


▪ People with haemophilia or related bleeding disorders from outside of Dublin, when attending St. James’s Hospital or Our Lady’s Children’s Hospital, Crumlin for treatment, for a hospital appointment or for a review clinic.

▪ An immediate family member, a spouse, a partner and/or child of the person with haemophilia or related bleeding disorder from outside Dublin, when attending St. James’s Hospital or Our Lady’s Children’s Hospital, Crumlin for treatment, for a hospital appointment or for a review clinic, or while a family member is an in-patient.

To make a booking, please contact Julia on 01 657 9900*.

For more info, please click here ([link removed]) .

* A nominal fee of €10.00 per booking, per night will be levied to offset the cost of cleaning and routine maintenance.



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Events Update

Hardly a surprise given the current situation we find ourselves in but so far we've had to make some changes to our events:

May

Women & Bleeding Disorders Info Day

Date: Saturday, May 9th
Venue: Hodson Bay Hotel, Athlone, Co. Westmeath

FYI: This event has been postponed and will be held in 2021 instead.

June

Mother & Daughter(s) Overnight

Date: Saturday June 20th & Sunday, June 21st
Venue: Lilliput Adventure Centre

This event has unfortunately been cancelled.

July

Father & Son(s) Overnight

Dates: Saturday July 4th & Sunday, July 5th
Venue: Lilliput Adventure Centre

FYI: This event has unfortunately been cancelled.

Mild Haemophilia & Haemophilia B Information Day

Date: Saturday 18th July

This event will now take place online, via Zoom.

August

Family Day Out

Date: Monday, August 10th
Venue: Dublin Zoo

FYI: This event has unfortunately been cancelled.

Von Willebrand’s Information Day

Date: Saturday, August 29th
Venue: Castleknock Hotel, Dublin

It is currently planned to proceed with this event

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Strategic Plan 2020 - 2024

Following much work and consultation, the board and staff of the I.H.S. completed a new Strategic Plan to run from 2020 to 2024.

This new plan will guide our direction and activities for the next number of years as we continue to provide the optimum information, services and support to people living with haemophilia, von Willebrand’s and other inherited bleeding disorders, and their families.

You can read / download the Strategic Plan here ([link removed]) .

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