Irish Haemophilia Society e-Zine: September 24, 2021
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October Members Conference 2021

Our October Members Conference will take place over the weekend of October 15 to 17 2021 in Mount Wolseley Hotel in Co Carlow. The conference this year will be open to adults only.

For all of you booked in, we are looking forward to seeing you all in Carlow and for those who can't make it this time, we hope to see you at our other events in the future.

As we have been unable to hold an in-person event since our AGM in 2020, we are all really excited for the weekend ahead.

You can check out the preliminary programme is here ([link removed]) too - we think it is an exciting programme.

H and H Ward, St. James Hospital

Since the start of the Covid 19 pandemic in March 2020, the H and H ward in St. james hospital has been used as a Covid- 19 ward or as an assessment unit for people suspected of having Covid 19 infection or where single isolation rooms were required. People with haemophilia have been admitted to other wards during that time period. More recently, in June and July, a specific bed was allocated to the NCC so that people with haemophilia who were on the waiting list for orthopaedic procedures could be admitted for these surgeries. While we understand the requirement to use the H and H ward for Covid 19 admissions and assessments during the pandemic, we are adamant that this ward must continue to be available to people with haemophilia and other inherited bleeding disorders in the future. To this end, the Society and the Chairperson of the National Haemophilia Council have met the Chief Executive of St. James hospital on two separate occasions-in October of last year and more recently in the
first week in September this year. On both occasions, we have received a firm commitment and a categorical assurance that people with haemophilia will be able to avail of the H and H ward as soon as possible. The ward continues to be used at present to deal with Covid 19. Regular meetings will now take place between the CEO and the Director of the National Coagulation Centre, Dr. Niamh O Connell where the CEO will be updated on the evolving situation in relation to access to in-patient beds for people with haemophilia. The Society and the National Haemophilia Council will continue to actively monitor this situation and we will be seeking regular updates and advocating for access to the ward at the earliest possible time.

It is worth remembering that the H and H ward was not randomly assigned by the hospital for the treatment of in- patients with haemophilia. As the name of the ward attests, the H and H ( which stands for Haemophilia and Hepatology) ward was specifically conceived, advocated for, funded, designed and built specifically to include in-patient treatment for people with haemophilia and hepatology patients. At the time of planning and design, hepatology concerns were also at the forefront in the medical treatment of people with haemophilia as many were dealing with Hepatitis C treatment and the consequences of Hepatitis C infection.

The history of the development of this ward goes back to the period immediately following the Lindsay Tribunal of Inquiry into the infection of people with Haemophilia with HIV and/or Hepatitis C , which reported in 2002.Following the Lindsay Tribunal of Inquiry, deficiencies were identified in the Haemophilia Care system and resources were applied by the HSE to deal with these deficiencies. Several external audits of the service had as a finding a clear deficiency in the provision of designated beds for people with haemophilia and related bleeding disorders within the context of a comprehensive care service. Some 116 people with haemophilia have died to date as a result of HIV and/or hepatitis C due to contaminated blood products. Those who survive would derive a measure of reassurance from having access, when required, to a purpose designed and built in- patient facility at St. James hospital which is the National Coagulation Centre for adults.

The history of the development of this ward can be traced back specifically to a draft detailed specification for this ward prepared by then National Haemophilia Director, Dr. Barry White in 2003.The ward was conceived, specifically funded by the HSE and designed using evidence-based design for the purpose of being an in- patient unit which would cater, as a priority for people with haemophilia and related bleeding disorders and Hepatology. The Society were involved and consulted at every stage of design and planning of the ward. The Society and the National Haemophilia Council also discussed the proposed ward with the then health Ministers in 2005,2008 and 2010 and there was a clear understanding of the rationale for this ward. Given the fact that the ward was to be a 12 single room ward ( later increased to 14), it was clear that not all of the beds would be required at any one time for people with haemophilia or hepatology patients but it was equally clear that they were to have
priority access to the ward.

The recognition that this ward was specifically meant for people with haemophilia was also strengthened in 2015 with the relocation of the then National Centre for Hereditary Coagulation Disorders ( NCHCD) to the same building two floors above, where the new National Coagulation Centre ( NCC) was purposely located. The concept was to provide a cohesive and geographically proximate location where the haemophilia in-patient ( including the assessment unit as well as the beds) and out patient ( NCC) facilities were very close , allowing optimal use of the staff who would work between both. St. James sought and received funding from the HSE specifically for the building of a Haemophilia and Hepatology (H and H) in patient unit. This was approved for this purpose and €9.23 million was allocated from the 2007 HSE Capital plan budget The specific funding for the ward was a result of many years of collaborative work between the National Haemophilia Director at that time, Dr Barry White, and the
Irish Haemophilia Society. Significant savings were made for the St. James budget due to the work of the Haemophilia Product Selection and Monitoring Advisory Board (HPSMAB). There was a clear understanding with the then hospital CEO that some of the reserves available due to these savings would be used to resource additional requirements for the new H and H ward (such as new dental equipment)

The Irish Haemophilia Society were involved at all stages of advocating for the facility, meeting with the Department of Health, the HSE and Ministers of Health with regard to the facility and were consulted formally on design and fit out. It is inconceivable that this would have been the case if the ward was not to be specifically used for people with haemophilia and inherited bleeding disorders. The nursing expertise, the orthopaedic surgery after care provided by these nurses who have been specifically trained, the disabled access rooms and bathrooms have been very welcome to our community where a disproportionate number of adults require orthopaedic surgery within the provision of a comprehensive care haemophilia service. It must also be remembered that adults with severe haemophilia can not go to other hospitals for major surgery as the specialized care has to be carried out within a comprehensive care centre for adults. This limits major procedures to St. James or Cork University
hospital and almost all of the major orthopaedic surgeries are carried out at St. James hospital.

The H and H ward has a long development history but it is, and remains, an indispensable part of the infrastructure for the treatment of people with haemophilia and other inherited bleeding disorders. The Society will spare no effort in advocating to ensure that people with haemophilia have access to this ward again in the near future.
Covid 19 Vaccination Booster doses

The Irish Times reported the following this morning:

“The Health Service Executive has said that a third dose of Covid-19 vaccine for those who are immunocompromised will get under way from next week.
People will begin to be notified of their appointments from Wednesday and the administration of the third dose of the vaccine will begin on Friday.
Speaking on RTÉ's Morning Ireland, HSE CEO Paul Reid said contact would be made with people who are deemed at highest risk, saying that risk would be determined by clinical teams.
"It will be a period of five to six weeks to complete this programme," he said, adding that it will be complex with it focused on the most vulnerable and immunocompromised.”

The Society are currently checking to see if people with haemophilia who are immunocompromised ( including those living with HIV) will be included in this group who will receive early booster doses of vaccine . Our understanding is that an indication for booster dose for those living with HIV will be based on an individual assessment of and comorbidities in each individual

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2021 Educational Grants: Deadline Extended

The deadline for applications for this year’s I.H.S. educational grants has been extended by one week to Friday, October 1.

The Society offers educational grants each year to people with haemophilia or related bleeding disorders, and/or their immediate family members who go on to do a post second level educational course.

The purpose of the grant is to offer financial support to students to assist them with the extra expenses involved with their studies.

For more info and links to apply, please click here ([link removed]) .

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Covid-19 Vaccination

Yesterday it was widely reported in the media that residents aged 65 years and older living in long term residential care facilities and people aged 80 years and older living in the community are set to receive a booster dose of an mRNA Covid-19 vaccine.

We believe this booster rollout will be expanded to other age groups in future so we thought it opportune to repeat the earlier advice for those with haemophilia or other inherited bleeding disorders who were preparing for vaccination.
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Precautions to be taken by people with inherited Bleeding disorders when receiving Covid-19 vaccination

Specific advice and precautions to be taken by those with inherited bleeding disorders when receiving the Covid-19 vaccine, which is an intramuscular injection have been previously set out by the National Coagulation Centre. They are as follows:

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Today it has been announced that the vaccine programme has reached a major milestone as more than 90% of adults have now been fully immunised against the Covid-19 virus. Here is a reminder of the government's plan for reopening of society:

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Upcoming Webinars

Continuing with our series of Webinars, our next meeting is coming up on;

Wednesday, September 29 @ 6pm:
Clinical Trials at the NCC in 2022
with Dr Niamh O Connell
(Dr O Connell will also provide a brief update on services from the NCC)

To join us for 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] ([link removed]) 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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Dublin Zoo Visit Photos

We were delighted with the uptake of free family passes for Dublin Zoo and we hope all of you who did, have a great time and enjoy your visit.

We would love it if you sent us some photos of your trip so we can include in our e-Zine / magazine, please send them to us at [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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My Buddy Cormac
Education tool for children with haemophilia & their families

A clever education tool for children with haemophilia and their families has been created through an innovative collaboration involving students from the Creative Media Department of the Munster Technological University, Children’s Health Ireland at Crumlin and the Irish Haemophilia Society.

My Buddy Cormac, an informative and positive awareness animation about haemophilia, focuses on the experience and challenges faced by children with the condition when treatment in hospital is required.

The story is told from the perspective of a child and it delivers an enlightening and creative take on events.

The animation and visual guide, which is aimed at children aged between eight and 12.

You can watch the animated video / read the accompanying guide 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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LINKS OF INTEREST
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Irish Haemophilia Society
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