Weekly Update from the I.H.S. 

Irish Haemophilia Society eZine: April 24, 2020
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Update from I.H.S. CEO
April 24, 2020

We were very pleased to see that Mary Kavanagh, the Nurse specialist from Children’s Health Ireland at Crumlin has just been appointed as the new Chair of the European Association of Haemophilia and Allied Disorders (EAHAD) Nurses committee. This is well deserved as Mary has provided excellent care and expertise to children with haemophilia for many years. We wish her every success in this role.

Society Zoom meetings

The meetings organised by the Society on the Zoom platform have been very successful and well attended to date. The first 2 meetings on Covid -19 and the implications for haemophilia, with Dr. Beatrice Nolan and Dr. Niamh O Connell respectively as speakers each had approximately 40 attendees on each call and the third meeting earlier this week, where I gave a presentation on Haemophilia Care in Europe, had 50 attendees. We have just now completed a fun family quiz. A further Zoom meeting will take place next week on Hemlibra with Dr. Beatrice Nolan as speaker and parents as the target audience. A Zoom meeting for mothers is being organised for May 1st and on May 6th, we will have a topic aimed at adults.

In reflecting on the current and future impact of Covid -19 on Haemophilia care in Europe, there is a lot of uncertainty. Currently, the pandemic has had an impact on the comprehensive care infrastructure in some countries including Ireland. The haemophilia H and H ward in St. James hospital is temporarily a Covid-19 treatment unit. In broader terms, we have seen the public health system integrating private hospital beds for an initial 5-month period. It will be interesting to see the long-term impact of this and if we may see some re-thinking of our two-tier health service.

GP’s and hospitals have been issuing electronic prescriptions to pharmacies which is an obvious move which perhaps should have been in place prior to this. It seems ridiculous that many prescriptions prior to this were still being sent by fax! The pandemic has accelerated the use of technology. Prior to this the National Coagulation Centre (NCC) had started to use telemedicine or phone consultations for some people with mild haemophilia or von Willebrand’s disorder. This has now been expanded to include people with severe haemophilia.

The NCC and CHI, Crumlin are both proceeding with out- patient reviews by phone and NCC are also now offering the option of video consultations. This is innovative, timely, very welcome and I believe will persist after the pandemic. If a person with a severe bleeding disorder is routinely asked to attend 2 review clinics per year, it would seem a very practical option in the future that one of those visits could be carried out remotely by phone or video call and the second would be an in-person visit which could perhaps also include the annual blood tests required. The clinical teams are also utillising platforms such as zoom, Skype or Microsoft Teams for their team meetings. New ways of working from home are being developed. As the social isolation measures will almost certainly last in some form for a considerable period of time, we will all have to learn new ways of communicating and adapting, new ways of working and new ways of maintaining our strong community.

Stay safe.

Brian O’Mahony
Chief Executive
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Webinar and Q&A Sessions

Following the success of our two Webinars and Q&A Sessions this week, we have decided to continue with the series.

Further meetings have been organised for next week;
* Wednesday, April 29th @ 11am: Hemlibra Information for Parents (Dr. Beatrice Nolan, Paediatric Consultant Haematologist, CHI at Crumlin)
* Friday, May 1st @ 11am: Mothers Discussion Group

Followed by:
* Wednesday, May 6th @ 11am: Physiotherapy and Exercise for Adults (Physiotherapy Team NCC)

To join us via Zoom, please email [email protected] (mailto:[email protected]) with your preferred date (or dates, you can join both if you like) and we will provide you with further details.
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Physiotherapy Update: National Coagulation Centre, St James's Hospital

Just a short note to inform you that the physiotherapy team in the National Coagulation Centre in St James's Hospital, will be doing a survey of people with severe haemophilia that attend the National Coagluation Centre.

They will be looking for feedback on their annual physiotherapy and Haemophilia Joint Health Score (HJHS) assessment service for people with severe haemophilia. They also hope to use the information to develop services to better fit the needs and demands of their service users.

The survey will be sent out soon and the team would really value your contribution.
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EHC World Haemophilia Week

Much like ourselves, the current COVID-19 pandemic has scuppered the European Haemophilia Consortium (EHC) events and World Haemophilia Day plans. They, like us, are continuing to organise events, talks and engage online.

In response, the EHC a virtual World Haemophilia Week programme, which is outlined below. All the videos, transcripts and info you will need are here ([link removed])

Programme from this week:

Monday – 20 April: The Importance of Patient Engagement and Community Involvement – Olivia Romero-Lux

Tuesday – 21 April: Discussion on Future Perspectives and Bleeding Disorders Treatment Options – Declan Noone; Prof. Flora Peyvandi; Brian O’Mahony

Wednesday – 22 April: Introduction to EHC Working Groups and Committees – Jim O’Leary; Naja Skouw-Rasmussen; Clive Smith; Manon Degenaar-Dujardin

Thursday – 23 April: EHC 2018 Annual Report – release and overview

Friday – 24 April: Introduction to EHC Exhibition “Open the Door to Another Reality” – Kristine Jansone; Amanda Bok
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Mary Kavanagh Appointed new Nurses Committee Chair for EAHADs

We would like to congratulate Mary Kavanagh, Haemophilia Nurse Specialist at CHI Crumlin on becoming the new Chair of the Nurses Committee of the European Association of Haemophilia and Allied Disorders (EAHAD).

This is well deserved as Mary has provided excellent care and expertise to children with haemophilia for many years. We wish her every success in this role.

There is an interview Mary Kavanagh over on EAHAD's website, you can read it here ([link removed]) .
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Physical Activity Resources for Children & Adolescents with Haemophilia

Keeping active, given the current situation we find ourselves presented with, is not without its challenges.

The same goes for activity for children & adolescents with Haemophilia – thankfully we can help with the latter.

We have been sent ‘Physical Activity resources for children and adolescents with Haemophilia’ which was kindly compiled by Paula Loughnane, Clinical Specialist Physiotherapist SMISCP @ Children’s Health Ireland (CHI) at Crumlin

It includes guidelines regarding duration and intensity of activity recommended for 0-18 years, and links to leaflets, websites, and videos which encourage physical activity.

You can read it below and download a PDF here ([link removed]) .

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Haemophilia & Covid-19: The Implications for Haemophilia Services (Q&As – CHI Crumlin)

On April 14th, the Society organised the first in a series of Webinar meetings for members via Zoom. This first meeting was with the team from the paediatric comprehensive care centre in Crumlin.

There are detailed notes of the questions and answers from the session onhaemophilia.ie ([link removed]) for easy referral for those who attended and those of you who were unable to participate.

Our thanks to Dr. Nolan and her team for an excellent and very well attended meeting

Read it all here ([link removed]) .

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Explaining Coronavirus to Children

It is pretty tough for us all to understand and keep up-to-date with all that's going on with Covid-19 - even tougher still is explaining coronavirus to children.

Thankfully there are some freely available publications to help out, like this one Coronavirus: A Book for Children; a book published by Nosy Crow, a British children’s publisher, with illustrations by Axel Scheffler, the artist who created images for the best-selling children’s book “The Gruffalo".

Download the PDF here ([link removed]) .

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Events Update

Hardly a surprise give the current situation we find ourselves in but so far we've had to postpone the following events:

Von Willebrand’s Information Day

Date: Saturday, April 18th
Venue: Castleknock Hotel, Dublin

FYI: This event has been re-scheduled for August 29th.

Young Adult Conference 2020

Dates: Friday, April 24th to Sunday 26th
Venue: Radisson Blu Hotel, Athlone

FYI: This event has been postponed until further notice and will be re-scheduled for later in the year.

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.

Mother & Daughter(s) Overnight

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

This event has unfortunately been cancelled.

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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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Our Spring 2020 Magazine is out now!
The Spring issue of our quarterly newsletter - our first remotely produced & digital only mag - is out now!

The latest issue comes packed with loads of interesting articles from members and staff, news and updates, reports from events and more.

In his CEO Report, Brian provides an update on Covid-19 and Gene Therapy, and reports on our recent AGM. Speaking of the latter, there are loads of photos from the weekend in there too.

There are great articles on the Know Your Flow Campaign ([link removed]) , an iPATH update and personal perspectives on educational grants and volunteering with the I.H.S.

It is our first remotely produced and digital only magazine – given the current situation we all find ourselves in – and we hope you enjoy reading it. You can read it via FlipBook here ([link removed]) or download the PDFhere ([link removed]) .

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