Your monthly digest from the I.H.S.

Irish Haemophilia Society eZine: November 2019
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Educational Grants 2019

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

This year we received a grand total of 26 applications - both online and through the mail - 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 in October 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

1st place is Shannon Carey
2nd place is Nicole Chun
3rd place is Molly O’Mahony

Margaret King Educational Grant

1st place is Dara Dowling
2nd place is David Moriarty
3rd place is Megan Cassidy
4th place is Hannah Byrne

Father Paddy McGrath Educational Grant

1st place is Tara Cassidy
2nd place is Elva O’Neill
3rd place is Saoirse McNamee

Congratulations to you all!

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Home Visits 2020



We would like to remind and reassure members of the support that the Society offers to persons with haemophilia, von Willebrand’s disease, related bleeding disorders and to their families on any issue relating to their haemophilia, or their ability to deal with their medical condition.

Our Outreach Co-ordinator Robert is the main point of contact for all our members who need support and assistance, be this queries regarding entitlements, advice, some support or a home, hospital or a school visit.

The Society is aware that not everyone can attend our events for a variety of reasons. However, this does not mean you do not need support. The I.H.S. can arrange a home visit at your convenience - remember, the staff are here for you!
It’s very important for us at I.H.S. to bring support directly to our members.

For more information or to book a home visit in 2020, please contact Robert on 01 657 9900 or [email protected] (mailto:[email protected]) .

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I.H.S. Membership

The Irish Haemophilia Society provides education, information, services and support to people with haemophilia and related bleeding disorders and their families.

Categories of Membership❓

▪ Ordinary Membership – €20

▪ Young Adult Membership – €10

▪ Online Membership – Free of Charge

▪ Life Membership – €600

▪ Associate Membership – Free of Charge

▪ Honorary Life Member – Awarded

▪ Over 65 Membership – Free of Charge

To become a member or renew your current membership, please call the office on

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Barretstown Camp Calendar 2020

The Barretstown Camp Calendar for Spring & Summer 2020 has been announced.

You can check out the details below and if you are interested or would like more info, please get in touch with Robert in the office on 01 657 9900 or [email protected] (mailto: [email protected])

You can check the calendar in more detail here ([link removed])

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The patient will see you now: Haemophilia extends the boundaries of electronic health care in Ireland

On October 14th 2019, the National Haemophilia Service in Ireland initiated a new and innovative advanced e health system for haemophilia and inherited bleeding disorders.

The new system was developed by Valentia Technologies in collaboration with the National Coagulation centre in St. James’s hospital, Childrens Health Ireland at Crumlin, Cork University Hospital, Galway University hospital and the Irish Haemophilia Society. The development of the system was financed by the HSE as one of three innovative Lighthouse projects which aim to optimise the use of e health technologies in the Irish healthcare system.

“Integrated electronic health records (EHRs) are critical to the delivery of safe, effective healthcare in the modern era” stated Dr. Niamh O’Connell, National Haemophilia Director.

Healthcare professionals, working in a network of Haemophilia Comprehensive care and treatment centres are able to access critical patient information in real-time to deliver truly holistic care. All people in Ireland with Haemophilia are registered on a single, national system which combines comprehensive, individualised patient health care records with a National Haemophilia register.

“We are in an era of exciting new treatment options for Haemophilia. This will be complemented by this new state of the art information system which will optimise patient experience, clinical outcomes, safety measures and resource utilisation. ” stated Dr. O’Connell.

Haemophilia in Ireland has long been at the forefront of the development of electronic patient record systems with a national system in place since 2006 and a smartphone app for monitoring and reporting of home treatment since 2010.

“Ireland is consistently recognised as a leading international haemophilia service and this project demonstrates our commitment to remain as in innovator” stated Feargal Mc Groarty, National Haemophilia Lighthouse Project Manager.

Phase 2 of this innovative project, due to be rolled out in 2020, will include a patient portal which will allow people with haemophilia to have access to their medical records on their smartphone or electronic device.

Phase 2 will also include the first national pilot of the Individual Health Identifier (IHI) in clinical practice. The IHI will be used to accurately identify anyone who uses a health service, allowing those who are delivering services to be assured that they have the relevant information for that person, leading to safer and better quality care.

“The patient portal will offer people with haemophilia the opportunity to see and contribute to their own medical records and to interact electronically with their health care team. This is the future.” stated Brian O Mahony, Chief Executive of the Irish Haemophilia Society.

Feargal Mc Groarty,

National Haemophilia System Project
Manager

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Hyde Square Apartments
Just to remind you all, that the apartment facility for members in Hyde Square apartments are available to:

▪ 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 in the office 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.

Dates for Your Diary

2020

March:

AGM & Conference

Dates: Friday, March 6th to Sunday, March 8th
Venue: Slieve Russell Hotel, Co Cavan

April:

World Haemophilia Day Event

Date: Friday, April 17th
Venue: TBC

Von Willebrand’s Information Day

Date: Saturday, April 13th
Venue: TBC

May

Women & Bleeding Disorders Info Day

Date: Saturday, May 9th
Venue: TBC

June

Mother & Daughter Overnight

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

July

Father & Son(s) Overnight

Dates: Saturday May 18th & Sunday, May 19th
Venue: Lilliput Adventure Centre

Mild Haemophilia Information Day

Date: Saturday, July 18th
Venue: Killashee Hotel, Naas

August

Family Day Out

Date: Monday, August 10th
Venue: Dublin Zoo

October

October Conference

Dates: Friday, October 16th to Sunday 18th
Venue: Mount Woseley, Co Carlow

November

Haemophilia B Information Day

Date: Saturday, November 14th
Venue: Hotel Kilkenny

You can keep up to date with the latest I.H.S. info on Facebook ([link removed]) & Twitter ([link removed]) .

Buy a book, help the society!
A perfect gift for the readers in your life

‘A Nursing Life’ is the story of a Midleton-born nurse who rises to the top of her profession in the 1960s before marriage sees her having to leave her job and become a fulltime mother. Tragedy and comedy collide as tales of marital breakdown and a bullying matron mix with nights on the town and days on ever-changing wards as the health service.

The books have been kindly donated to us by author Aubrey Malone. They cost €10 (excl. P&P) – with all monies going to the society.

GDPR

The introduction of General Data Protection Regulation (GDPR) came into effect on 25th May, 2018.

GDPR is the EU’s new privacy law and affects every organisation using personal data including the Irish Haemophilia Society.

If you no longer wish to receive communication from us or wish to be removed from our database, please let us know and we will remove your details.

Fundraising for the I.H.S
Do you have any bright ideas for fundraising?

Would you like to take part in a fundraising event but don't know where to start?

There are many ways you can get involved with fundraising, especially around Christmas.

Why not start with:

• Christmas Carolling
• A festive bake sale
• Set up a gift wrapping stall at your local shopping centre

Contact Nina on [email protected] or call the office on 01-6579900 if you would like to take part.

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LINKS OF INTEREST
** Irish Haemophilia Society ([link removed])

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Irish Haemophilia Society
Cathedral Court
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Dublin 8, Dublin
Ireland

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