Irish Haemophilia Society E-zine: Oct 23, 2020

Irish Haemophilia Society eZine: Oct 2, 2020
View this email in your browser ([link removed])

[link removed]

CEO Update

:: October 23, 2020 ::

Comprehensive Care services at St. James’s Hospital

The Covid-19 pandemic has had a significant impact on the infrastructure for treatment of haemophilia and other inherited bleeding disorders in St. James hospital. The H and H ward, which was the primary unit for in-patient admissions for people with haemophilia was used initially as a Covid-19 ward and is now used as an assessment unit for patients who may have Covid-19. This is entirely understandable given the need for single rooms for those with Covid-19 and the relative shortage of single beds in St. James's Hospital.

Since the start of the pandemic, people with haemophilia who require in-patient stay have been admitted to various wards in the hospital. This is not ideal as the nurses who are very familiar with treating haemophilia and with issues such as the requirement for timely infusion of factor concentrates are not available routinely in those other wards. Of the two dedicated dental treatment suites for people with bleeding disorders at the National Coagulation Centre (NCC) in St. James’s, one suite was sequestered for other use during the pandemic. This has led to restricted capacity during the pandemic for in person dental visits and procedures due to the longer waiting time required between patients as many dental procedures generate aerosols and the rooms have to be decontaminated between patients.

Despite this, the dental team provided an outstanding virtual service during the pandemic to date and saw many patients on an emergency basis. Given the lack of access to hospital beds and the understandable reluctance of the hospitals and indeed the patients to avoid admission where possible, it is no surprise that there has been a significant increase in the waiting list for both orthopaedic procedures and other surgeries in people with haemophilia.

The Society have been acutely aware of these issues as indeed have the National Haemophilia Council. On October 12^th, the Council represented by Chairperson Brian Fitzgerald, Dr. Niamh O'Connell and I had a very productive meeting with the Chief Executive of St. James's Hospital, Mary Day during which all of these issues were discussed in detail. We pointed out the absolute importance of the H and H ward to the haemophilia community in the long term, the importance of having adequate dental care and preventive treatment and the ongoing requirement for orthopaedic surgery.

St. James's are dealing with many challenges at the present time including a shortage of single rooms. A rapid build process for more single rooms has been initiated. Building work has also been almost completed on a new entrance to the H and H ward which will give people with haemophilia and other patients separate access to the assessment unit in the ward. This work is scheduled to be completed by October 27^th.

The meeting was very productive, and the following commitments were made by St. James's Hospital:
* People with haemophilia will have access to the H and H ward again in the future when the worst of the pandemic is over or when the rapid build single rooms are available.
* In the interim, a ward will be designated where people with haemophilia will be admitted where possible which would give access to the specialist nursing staff
* The second dental suite will be returned to the haemophilia service within two weeks
* A working group is to be established to co-ordinate access to surgery for people with haemophilia. Since the meeting, it has been confirmed that this group will be chaired by Mary Day personally

We will keep members updated on progress with these issues.

Hospital Admissions

We have been made aware that there have been some occasions over the past months where people with haemophilia or other inherited bleeding disorder were admitted to hospitals which are not haemophilia treatment centres (any hospital other than St. James, Children’s Health Ireland, Crumlin, Cork University Hospital and Galway University Hospital). On some of these occasions, the person did not inform the National Coagulation Centre or their haemophilia treatment centre. This is dangerous. You should not assume that staff in other hospitals are familiar with haemophilia, or other inherited bleeding disorders.

Always let the staff at the NCC or your haemophilia treatment centre know immediately if you are being admitted to another hospital for any reason.

Make sure the admitting hospital contact the NCC and keep your bleeding disorder alert card and your diagnosis card provided by the NCC or CHI, Crumlin with you and show them on admission. Do not assume that the admitting hospital will contact the haemophilia centre for advice - let your haemophilia centre know if you are being admitted elsewhere

Haemophilia B quantitative study

A team from the NCC and Trinity College Dublin, including psychologist Patricia Byrne will be carrying out a survey among people with haemophilia B on their experience of using extended half-life Factor IX concentrate since 2017. It is important to understand the perspective of people with haemophilia B on this generation of treatment and to look at the outcomes of treatment. We ask any member contacted in relation to the survey to participate.

October Conference

Our October conference, held virtually last weekend, featured excellent presentations from Prof. Mike Makris from Sheffield on Gene Therapy, from Dr. Niamh O Connell and Dr. Beatrice Nolan on Hemlibra and then a Treatment discussion panel on Gene Therapy, Hemlibra and Extended half life factor concentrate. The speakers at the panel were David Flanagan, Colm Walsh and I. On Sunday morning we had a talk on maintaining a healthy diet during a pandemic. T

his was followed by an innovative session with Physiotherapists Sheila Roche, Paula Loughnane and Mark Mc Gowan. This session featured a short talk followed by participants being divided into two groups on zoom where the physiotherapists led them through an exercise session using Therabands which had been mailed to registered participants by the Society. The session was very enjoyable, and tiring. It clearly demonstrated the wide range of exercises which can be done at home using only a Theraband and a chair. This will be even more important as we have now entered another 6 weeks of Level 5 lockdown.

It is not necessary to have expensive or complex gym or exercise equipment in order to exercise properly at home. This session followed on from a successful pilot programme for some older adults with severe haemophilia earlier this year where an 8 week exercise programme, supervised by the haemophilia physiotherapists, was carried out on Zoom. We hope to roll out this programme to other members where there is interest. Those who were not at the conference or at the session on the Sunday morning missed a great opportunity to clearly see how easy it is to exercise safely and simply at home.

We have posted a video of the physiotherapists supervising the exercise session on the website - you can watch it here ([link removed]) . If any member is interested in acquiring a Theraband, they can contact the Society, and do let us know if you would be interested in joining an exercise class in the future designed and supervised by the haemophilia physiotherapists.

[link removed]
Educational Grants Update 2020

Thanks to everyone who applied for an educational grant from the I.H.S.

This year we received a lot of applications once again this year, which is brilliant! The I.H.S.
educational grants are hugely beneficial and go some way to helping cover the expense of one’s education.

The sub-group of the board met (virtually) over the past few weeks to discuss and score all the applications so we are delighted to announce the recipients of the main grants are as follows:

Maureen & Jack Downey Educational Grant
(Available to a person with haemophilia or bleeding disorder, including a carrier who has levels ranging from 1% to 40% - post second level course 7 to 9)
First Place – Conor Birkett €4,000

Margaret King Educational Grant
(Available to a family member of a person with haemophilia or bleeding disorder, or a carrier with levels greater than 40% - post second level course 7 to 9)
First Place – David Moriarty €2,000

Father Paddy McGrath Educational Grants
(Two awards: 1. available to a person with haemophilia or bleeding disorder, including carriers 2. available to family members – both awards post second level course 5 to 6)
First Place – Belen Fernandez Mora €1,000 (bleeding disorder category)
First Place – Tadgh Moriarty €500 (family member category)

Congratulations to you all!!
[link removed]

KIDS Virtual Conference

The Irish Haemophilia Society would like to invite all our young members to our first ever online children’s programme!

This programme will be run on Saturday, November 7th for 3 groups; Cubs, Kidlink and Youth Group. The programme will be run using Zoom. Zoom is a platform to provide safe video and chat-based educational and fun experiences on computers, tablets and smartphones.

Details of the Programme:

Cubs (For Ages 4 - 7) - Time: 11:00 - 11:55
* Draw What You Hear
* Wildlife Adventure
* Crazy Quiz
* Lets Talk About Teeth

Kidlink (For Ages 8 -12) - Time 12:00 - 12:55
* Draw What You Hear
* Travel The World From Your Couch
* Crazy Quiz
* Making A Movie!
* Name That Veg
* Time To Exercise

Youth Group (For Ages 13 - 17) - Time: 13:00 - 14:30
* Draw What You Hear
* Travel Ireland From Your Couch
* Crazy Quiz
* Making A Movie!
* Guest Talk
* Time To Exercise

How it works

You will receive an email invitation accompanied with a consent form. By filling in and signing this consent form, you will be giving consent to allow your child/children to participate in our online event. When you fill in and sign this form, please send it back to us via WhatsApp or email. Once consent is received, we will issue you with the relevant material required for the group along with the login link and passcode.

Please note your child/children will not be able to participate without a signed consent form.

What will happen

The children’s programme will be hosted by Robert Flanagan our Children’s Programme Co-ordinator and accompanied by 3 of our longstanding volunteers. They will run activities and talks for a short duration of time and will try to have as much fun as possible. All that is need to participate is some colours and paper. Parents are more than welcome to join the call with their children.

To book a place or for more info, please contact Robert via [email protected] (mailto:[email protected])

[link removed]


Upcoming Webinars

Continuing with our series of Webinars and Q&A Sessions, we have further meetings coming up on;
Wednesday, October 28 @ 6pm: An Update from CHI at Crumlin with Dr Beatrice Nolan

Wednesday, November 4 @ 6pm: Ageing & Bleeding Disorders with Prof. Mike Makris

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

Join Zoom Meeting
[link removed]

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.

[link removed]


New vWD Info Booklet

The I.H.S. is delighted to announce a new, updated information booklet on von Willebrand Disorder (vWD) and we would like thank Dr Michelle Lavin & Declan Noone for their contribution to this publication.

We hope it will provide readers with a better understanding of vWD and the treatments available and an opportunity to get answers to all those unasked questions.

What is Von Willebrand disorder (vWD) How is vWD inherited? Types of von Willebrand Disorder? What are the symptoms? How is it diagnosed? How is it treated?

You can read / download the digital version here ([link removed]) – if you would like a hard copy / copies, please contact us at [email protected] (mailto:[email protected])

[link removed]

Autumn Magazine Now!

Members should have received a copy of the magazine in the post by now but you can also read a digital copy on our website.

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

In his CEO Report, Brian provides an overview on how our communications and outreach have morphed in the new reality we find ourselves in, and looks at the provision of haemophilia care also.

Chairperson John Stack provides us an update from his end while on Dr Michelle Lavin offers us an insight to the ‘Know Your Flow’ project and campaign.

Brian also continues with part two in a series examining ‘Past Progress and Future Promise’ of haemophilia care in Europe, followed by an update on Tele-Dentistry in 2020 from Laura Parkinson and Niamh Larkin explains what her new role as Advanced Nurse Practitioner; Haemophilia.

Check it out here ([link removed]) & we hope you enjoy reading it.

[link removed]
Barretstown - Virtual Programmes

Barretstown Live, broadcasts from 10am to 3pm over the weekend with activities designed for all ages, and all the activity supplies you will need delivered to your door.

Families can look forward to an action packed day with activities like arts and crafts, baking, wacky games, and all the laughter you can expect from a day at camp.
In advance of the day, a Barretstown Live pack will be delivered to your home by courier.

It contains:
• a schedule of activities for the day.
• all the activity supplies needed to join in the fun and create magic moments.

You will also receive the password protected broadcast link via email and all the information you will need to join in the fun.

How to get involved?

We bring the magic of camp straight to your home! Sign up today to join in the fun of ‘Barretstown Live’. To book a place please contact our Family Liaison Team by [email protected] (mailto:[email protected])
[link removed]
Watch I.H.S. Webinars On Demand

We've been uploading recordings from our ongoing series of webinars so you catch up on the ones you've missed at your convenience

A sample of what we have uploaded so far;
* Exercise & Health Session from our Virtual October Conference
* Dental Care: The New Normal with Alison Dougall and Laura Parkinson
* Heavy Menstrual Bleeding in Adolescent Girls with Dr Geraldine Connolly
* Update on New Children’s Hospital with Eilish Hardiman, CEO
* Exercise and Physical Activity for Children with Paula Loughnane, Senior Physiotherapist at CHI Crumlin
* Dental Care and Nose Bleeds in Children with Dr Kirsten Fitzgerald and Dr. John Russell
* Gene Therapy Discussed with I.H.S. CEO Brian O'Mahony & EHC President, Declan Noone
* The Role of the Advanced Nurse Practitioner in Haemophilia with Niamh Larkin, cANP

You can watch them here ([link removed]) .

[link removed]

Parents Handbook

As a parent, when a child is diagnosed with a bleeding disorder, you may feel scared, worried and even guilty. It may be an especially hard time for those with no family history of the condition.

It is important to remember that with good treatment the child with a bleeding disorder has every chance of growing up as an active, fit person who can participate in family, school and later working life. Because bleeding disorders are rare conditions parents may feel isolated and alone and it is very helpful to be put in touch with others in a similar position.

The Society offers support and advice to help improve the quality of life for people with bleeding disorders - and we hope that this publication is a useful, reassuring and helpful resource.

If you would like a physical copy, please contact the office on 01 657 99 00. You can read a digital copy here ([link removed]) .

[link removed]

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.

============================================================
** Connect with Us ([link removed])
** [link removed] ([link removed])
** [link removed] ([link removed])
** [link removed] ([link removed])
** Email (mailto:Mailto:[email protected])
** LinkedIn ([link removed])
LINKS OF INTEREST
** Irish Haemophilia Society ([link removed])

** World Federation of Hemophilia ([link removed])

** European Haemophilia Consortium ([link removed])

** Consultative Council on Hepatitis C ([link removed])

** National Haemophilia Council ([link removed])

** Barretstown Camp ([link removed])

** Get Ireland Active ([link removed])

** Children in Hospital Ireland ([link removed])

** Health Service Executive ([link removed])

** Irish Health.com ([link removed])

** Citizens Information Bureau ([link removed])
Copyright © 2016 Irish Haemophilia Society, All rights reserved.
As a member of the Irish Haemophilia Society you have agreed to be on a mailing list from which you will receive monthly eZines from the IHS.

Our mailing address is:
Irish Haemophilia Society
Cathedral Court
New St,
Dublin 8, Dublin
Ireland

This email was sent to [email protected] (mailto:[email protected])
why did I get this? ([link removed]) unsubscribe from this list ([link removed]) update subscription preferences ([link removed])
Irish Haemophilia Society . Cathedral Court . New St, . Dublin 8, Dublin . Ireland

Email Marketing Powered by Mailchimp
[link removed]