Irish Haemophilia Society E-zine: May 21, 2021

Irish Haemophilia Society eZine: May 21, 2021
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An Update From I.H.S. CEO

Cyber attack on HSE

The appalling, despicable and callous criminal hacking of the HSE information system has been the main national news story in the past week. The main haemophilia patient information system - indici has been in place for the past 2 years as the successor to the older system, Clintech. indici links the haemophilia information system at the 4 centres in St. James’s, CHI @ Crumlin, Cork University Hospital and Galway University Hospital. Fortunately, the indici system is hosted outside of the HSE network and therefore was not affected.

Clinics and routine activities in haemophilia have been continuing as normal this past week and patient files for people with haemophilia and other inherited bleeding disorders are fully accessible to the health care teams from indici. St. James’s have reassured me this morning that they are closely monitoring the situation that patients will be notified immediately if any issues arise in the future.

In the meantime, there is a general increase in hacking and scams so please be aware and alert to fake calls from the HSE, banks or other agencies looking for your bank or other details. We are aware of a confirmed case (not a person with a bleeding disorder) who received a bogus call purporting to be from the HSE. The caller had the persons details including PPS number, date of birth, contact details and dates of their hospital stay. They were seeking the persons bank details to give them a “refund”. Please be alert for these type of scams.

Change in home treatment kits for Hemlibra

New home treatment packs including filter needles are currently being rolled out for people on Hemlibra. The centres will be in touch with those who are on Hemlibra or whose children are on Hemlibra. The Society have organized a webinar on the new kits with Evelyn Singleton at 6pm on Wednesday next, May 26^th. We would encourage those on Hemlibra to attend.

This also gives me an opportunity to remind readers of our newly published Hemlibra booklets which are now available to download from our website. If you would like a hard copy or an additional hard copy, contact us at [email protected] (mailto:[email protected]) .

Gene Therapy survey

We are seeking members with severe or moderate Haemophilia A or B who would be willing to participate in an anonymised on-line survey on attitudes to Gene Therapy using a process called a discrete choice experiment. This would involve logging on to an online portal and selecting choices between different options in relation to what you would like to see from a Gene Therapy. This is part of a larger survey being carried out by HCD economics in the UK and the study will be sponsored by a pharmaceutical company.

No payment will be made to members who would be willing to participate or to the Irish Haemophilia Society but we have arranged that, for each participant who takes part, a payment will be made to our Twinning partner organisation in Jordan - the Jordanian Society for Haemophilia and Thallasaemia - to help with their work. The published study based on an analysis of the surveys received will add to the scientific literature in this important area. If you are interested, please contact [email protected] (mailto:[email protected])

Brian O’Mahony,
Chief Executive

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An Update from the Centres on Disruption following HSE Cyber Attack
Children’s Health Ireland (CHI):

Children’s Health Ireland (CHI) continues to review the situation resulting from the recent HSE cyber-attack and having to shut down our IT systems. It is expected that our IT systems will be shut down for this week.

We are pleased to say that the following services have not been impacted:
* Haematology: Clinically urgent inpatient and day care treatments, including Hemlibra appointments. Please attend appointments as normal.

If you need to speak to one of the Clinical Nurse Specialists urgently please call:

Mary Kavanagh, Tel: 01 4096939, Bleep: 8732
Imelda Kelly, Tel: 01 4096940, Bleep: 8733
Ms. Caitriona Ferry; Bleep 731

If you do not get a response within ten minutes, please call back.

Emergency Service

If you have a haemophilia concern and it is after 5pm Monday – Friday or at the weekend or over a bank holiday weekend, please phone the hospital switchboard on 01 4096100 and ask to speak to the Haematology Registrar on call.

National Coagulation Centre @ St. James's Hospital:

We have been informed by the National Coagulation Centre that services have not been impacted by the recent cyber-attack and that all appointments and clinics are going ahead. However, they do not have any email access at the moment. Therefore, if you wish to get in touch with the National Coagulation Centre, please telephone:
* Phone: (01) 416 2141 / (01) 416 2142
* PLEASE DO NOT EMAIL THE CENTRE AS CURRENTLY THE EMAIL SYSTEM IS DOWN.

H&H ASSESSMENT UNIT
Opening Hours: 08.30hrs – 17.00hrs Monday to Friday
Tel: 01 410 3130

In the case of emergency after 5pm and on weekends, please call (01) 4103000 and ask to speak to the Haematology SHO on call.

Cork University Hospital:

Due to the recent cyber-attack on the HSE, Cork University Hospital (CUH) IT systems remain shut down at present however the main services in the Cork Coagulation Centre continue to be provided.
* All of the clinics and treatments will continue as planned, unless you are contacted.
* The drop-in centre is open 8:30-5pm daily.
* Please call the Clinical Nurse Specialists on (021)4922278/4920482 if you wish to attend the centre or need any assistance.
* Please do not email the centre as we do not have access to emails.
* In the case of emergency after 5pm and on weekends please call (021) 4546400 and ask to speak to the Haematology Registrar on call.’

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Physiotherapy / Exercise Classes

The Society are initiating a new programme of Physiotherapy/Exercise classes for members as part of our new focus on lifestyle and healthy living.

Groups 1 & 2 started this month and we are now actively recruiting participants for groups 3 & 4. Each programme will consist of 6 evening classes each of 1 hour duration. Each group will be run by a haemophilia physiotherapist from St. James's Hospital: Sheila Roche and Mark McGowan. A seventh education evening will be devoted to updates on lifestyle with a dietitian and counsellor or psychologist.

Each group will be for a maximum of 8 people. Recruitment will be on a first come first served basis.

The Groups and relevant dates will be as follows:

Group 3: People with Severe Haemophilia, age >50 years
Schedule: Thursday, June 17 (Education evening)
Tuesday June 22, June 29, July 6, July 13, July 20, July 27
Time: 7-8pm

Group 4: Women with Bleeding Disorders (including carriers) , age 18 years or older
Schedule: Thursday June 17 (Education evening)
Thursday June 24, July 1, July 8, July 15, July 22, July 29
Time: 7-8pm

If you would like to participate, please e-mail info (mailto:[email protected]) @haemophilia.ie (mailto:[email protected]) . Specify which group you are eligible for and confirm the address to where we will mail the TheraBand.

We will be organising additional groups for other categories and age groups among the membership from September onwards.

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EHC: Medical situations where a third vaccine dose is recommended

The European Haemophilia Consortium have posted information on the decision of the French authorities to provide a third dose of vaccine to some people who have been recipients of solid organ transplants, on dialysis or who are on strong immune-suppressive therapies. This is due to the fact that the immune-suppressive therapies may cause them to have a sub optimal antibody response to two doses of the vaccine, necessitating a third dose. The EHC information is below.

The European Haemophilia Consortium (EHC) continues to closely monitor developments with the COVID-19 pandemic and associated roll-out of COVID-19 vaccines. The EHC wishes to inform its community of the following recent Notice by French government authorities.

On May 7th French vaccination authorities, Le Conseil d’Orientation de la Stratégie Vaccinale, issued a recommendation calling for a third vaccine dose to be administered in certain medical situations, such as in patient with severe immune-deficiencies including:
* Organ transplant recipients
* Dialysis patients, and
* People taking strong immune-suppressant therapies

French authorities cited international data that demonstrates a range from absent to insufficient antibody response after administration of two vaccine doses, and therefore issued the following recommendations:
1. Strict maintenance of protective barriers by all immune-deficient people as well as their families and caregivers;
2. Observance of national vaccination schemes with a maximum interval of 28 days in between doses of mRNA-based vaccines;
3. Vaccination of adults who live in the same household with a severely immune-deficient person, whether child or adult (e.g., recipient of a solid organ transplant, recent bone marrow transplant, dialysis, or patient affected by auto-immune disease taking strong immune-suppressant therapies such as anti-CD20 or anti-metabolites, those affected by certain types of lymphomas treated with anti-CD20, and those affected by chronic lymphocytic leukemia);
4. Thorough vaccination of healthcare providers treating/caring for this cohort of patients; and
5. Systematic administration of a third vaccine dose four weeks after the second dose in people who are severely immune-deficient or as soon as possible if more time has already elapsed.

The complete French government Notice together with its supporting scientific references is available here ([link removed]) (in French).

The EHC will continue to closely monitor and update on COVID-19 developments relevant to our community, as necessary.

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Upcoming Webinars

Continuing with our series of Webinars, we have further meetings coming up on;

Wednesday, May 26, 2021 @ 6pm:

Hemlibra: An Update on the new kits

with Evelyn Singleton, NCC

Tuesday, June 8, Time TBC:

An Open Forum Discussion Cork Coagulation Centre

with Dr Cliona Duggan, CUH

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

Join Zoom Meeting
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Password: 1968

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

FYI: We shall be recording the audio and slides from selected 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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International Clinical Trials Day

There is a very strong culture of clinical trial involvement by the I.H.S. in Ireland for past several years with great clinical trial teams at CHI at Crumlin and St James's Hospital. Trials foster a culture of innovation and research, and lead to faster implementation of new treatments.

May 20th was International Clinical Trials Day & CHI at Crumlin acknowledged the amazing research being undertaken to further the care & treatment of their patients, and shared a video of I.H.S. member Nathan talking about his Clinical Trial Journey.

Watch it here ([link removed]) .

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EHC Webinar on Women and Bleeding Disorders
Saturday 29 May 2021, 11.00-13.00 GMT

The EHC Women and Bleeding Disorders Committee is delighted to invite you to its second 2021 webinar on Saturday 29 May 2021, from 10.00 to 12.00 hrs CET. Join us to discuss three key issues in the life of women with bleeding disorders:
* Preparing for menarche,
* Fertility, and
* Ageing.

A panel of medical experts will join our committee members to have informative discussions and take any audience questions. This event will be held in English only and is intended for women with bleeding disorders and their families and healthcare professionals interested in the subject.

Register here. ([link removed])

For more info, please see the EHC website ([link removed]) ,

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Our Spring Magazine Out Now!

Our Spring Magazine is out now and is packed with plenty of interesting articles from members and staff, news and updates, reports and more.

We like you are hopeful that as 2021 progresses and vaccines rollout, we will begin to see the end of the pandemic on the horizon. The I.H.S. team is continuing, like many of you, to work remotely but we are very proud of the work we’ve achieved in these trying times and how our community has remained; we are especially pleased with how our Virtual AGM & Conference went.

In this issue Brian shares his thoughts on our Virtual Conference & AGM and outlines the new von Willebrand (VWD) guidelines and looks at World Haemophilia Day 2021, with a weeklong focus on VWD. Elsewhere, Robert gives the lowdown on the new I.H.S. Health & Wellness programme; a members guide to be the best you can be.

There is an update on the iPATH study’s progress into 2021 and some personal perspectives on the I.H.S. grants & how the I.H.S. can help you with your studies. I.H.S. member John O’Mahony reflects on a little adventure and the despair of encountering a total stranger at his bedside not wearing a mask – this is a very funny story!

You can read / download a digital edition here ([link removed]) - we hope you enjoy reading it!

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Emicizumab (Hemlibra®) Booklets

The Irish Haemophilia Society is delighted to share two new booklets on Emicizumab (Hemlibra®).

There is one booklet for people with Factor VIII Inhibitors and one for people with Factor VIII deficiency without Inhibitors.

These publications have been produced as an educational tool for members and we hope you find them useful and informative.

The I.H.S. does not engage in medical practice and does not recommend particular treatment for specific individuals. It is strongly recommended that individuals seek the advice of their haemophilia treating clinician and / or consult printed instructions provided by the pharmaceutical company before administering the therapy referred to in this publication. The I.H.S. does not endorse particular treatment products or manufacturers.

You can read / download them here ([link removed]) . If you would like a physical copy, please contact us at 01 657 9900 or [email protected] (mailto:[email protected])

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Travelling or Studying Abroad?

What You Need to Know....

If you are relocating or studying abroad there is a lot to consider before you travel.

Each country has their own rules and regulations that you must follow to ensure you receive equivalent healthcare to what you receive here in Ireland.

Most countries cover emergency / urgent healthcare that is required while a person is visiting, in accordance with your health / travel insurance. However, this usually does not extend to regular haemophilia treatment and does not cover prophylaxis nor regular on demand therapy.

To help, our outreach co-ordinator Robert has designed a handy and informative infographic to outline all you need to know. You can check it out on our website ([link removed]) .

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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;
* Covid-19: An Update on Vaccines & Side Effects with Prof James O’ Donnell
* Staying Healthy at Home: Physiotherapy and Exercise Groups with Sheila Roche, St. James’s Hospital
* An Update on the National Coagulation Centre with Dr Niamh O’Connell (Oct)
* Dental Care: The New Normal with Alison Dougall and Laura Parkinson
* Heavy Menstrual Bleeding in Adolescent Girls with Dr Geraldine Connolly
* 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 Discussion 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]) .

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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 Children’s Health Ireland at 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 Children’s Health Ireland at 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 us 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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