Irish Haemophilia Society e-Zine: April 22, 2022

Irish Haemophilia Society e-Zine: April 22, 2022
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Ireland Seen As Gold Standard In Haemophilia Care, 20 Years On From Publication Of Lindsay Tribunal Report

20 years on from the publication of theLindsay Tribunal Report, ([link removed]) procurement of Haemophilia medications in Ireland overseen by the Haemophilia Product Selection and Monitoring Advisory Board (HPSMAB) is now seen as the most effective model globally in haemophilia care. The success of the HPSMAB andNational Haemophilia Council ([link removed]) (NHC) is being highlighted by the Irish Haemophilia Society for World Haemophilia Week ([link removed]) which began on Sunday, 17th April.

The Lindsay Tribunal of Inquiry into the infection of people living with Haemophilia with HIV and/or Hepatitis C, found that because of contaminated blood products supplied by the state, a total of 106 people with Haemophilia were infected with HIV and 255 people were infected with Hepatitis C. To date, 114 of these people have died.

As a result of the findings of the report, two separate bodies were established in Ireland: The National Haemophilia Council, a statutory body established to advise the Minister for Health and HSE on aspects of treatment and care; and the HPSMAB, a non-statutory board to provide expertise and advice on the procurement of the safest and most effective treatments for Haemophilia.

Haemophilia is a group of inherited blood disorders in which there is a life-long defect in the clotting mechanism of the blood. It is a genetic blood disorder, which is usually inherited, and a rare disease with around 400,000 people living with the condition globally and 900 here in Ireland. The gene is passed down from a parent to a child. With no known cure, a person who is born with Haemophilia must learn to live with the condition with the aid of various treatments.

Speaking at the launch of World Haemophilia Awareness Week, Minister for Health, World Haemophilia Day, T.D. said: “Since the publication of the Lindsay Tribunal Report 20 years ago, Ireland has come a long way to ensure quality treatment options for patients. Today, we remember all those Haemophilia patients who were impacted and their families. Awareness days such as this, help us to raise further awareness and educate people about this rare disease. I would like to commend the work of the Irish Haemophilia Society, The National Haemophilia Council, the HPSMAB and the haemophilia treatment centres for their continuous hard work and dedication in providing quality care for those living with Haemophilia to improve quality of life for all affected.”


** Ireland is leading the way in the treatment of Haemophilia
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As a result of the Lindsay Tribunal Report and subsequent founding bodies, Ireland has been at the forefront in terms of the introduction of the latest and most effective therapies. The HPSMAB has saved Ireland enormous costs in the supply of quality treatment for those living with Haemophilia and Ireland now has the most effective model of the procurement of Haemophilia medications globally. In 2002, Ireland was paying 26% above the EU average price for Haemophilia products. Now, Ireland is paying significantly below the EU average price.

Director of the National Coagulation Centre, Prof. Niamh O Connell, said: “The significant achievements seen in the organisation of Haemophilia care in Ireland have been built on a model of strong collaboration and partnership between the Haemophilia treaters, the treatment centres at St. James's Hospital, Children’s Health Ireland at Crumlin Hospital in Dublin, University Hospitals in Cork and Galway and the Irish Haemophilia Society, with key input and engagement from the Department of Health.”

Brian O’ Mahony, Chief Executive of the Irish Haemophilia Society and Haemophilia B patient, commented “World Haemophilia Day enables us to raise much needed awareness of Haemophilia to ensure patients have access to the care they need, when they need it. The Irish Haemophilia Society has provided training on procurement to doctors, patient organisations and health officials in over 30 countries since 2010. Unfortunately, we cannot change the past, but we are working hard together with the Minister for Health, The National Haemophilia Council and HPSMAB to ensure Haemophilia patients in Ireland have access to world-class treatments. We are also actively engaging with other countries to ensure their patients too, can have appropriate treatment options for patients living with Haemophilia. It’s our belief that a similar system of organisation and formal involvement of doctors and the relevant patient organisations in the care and procurement of medications could benefit many other rare or
indeed chronic diseases in Ireland.”

John & Oisin Stack

Also speaking today, John Stack, Father of both Fionn and Oisin living with Haemophilia A, said, “World Haemophilia Day is important, and it gives the public an insight into what life is like for my two boys, Fionn and Oisin, who are age 9 and 11 respectively. Fionn and Oisin were both diagnosed with Haemophilia A at a young age but due to the advancements in treatments, they are luckily leading an active and normal childhood. 20 years ago, their outcomes may have been somewhat different. I am so grateful to the Irish Haemophilia Society. Because of them, parents like myself, have somewhere to turn to for education, support and advice on how best to navigate life with Haemophilia for my children.”

During that day, Jim O'Leary was presented a cake to mark his 66th birthday by Oisin Stack (aged 11). Both have haemophilia A with inhibitors.

For further information on Haemophilia, please visit the Irish Haemophilia Society’s website at: www.haemophilia.ie

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Check out the New I.H.S. Website

After a huge amount of work we are delighted to share our new, revamped and fresh faced website. It has taken a lot of hard work, time, effort and collaboration but we hope you will be as happy with it as we are.

Some sections are still a work in progress but we hope you like it.

Take a look here ([link removed])

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New Video Focuses On Transition To Adult Health Services
Watch the video on our newly revamped ([link removed]) website ([link removed])

Sunday, 17 April marked World Haemophilia Day 2022 ([link removed]) . This year, the National Coagulation Centre (NCC) at St James’s Hospital ([link removed]) and Children’s Health Ireland ([link removed]) (CHI) are shining a light on the journey experienced by young people when they transfer their care from a paediatric (children’s) hospital to an adult hospital.

Initially, this can be an overwhelming experience for young adults with bleeding disorders. However, the end goal is to see each person take control of their condition and their life.

While the experience of transfer of care can be unsettling for some people, the multidisciplinary teams at the NCC and CHI aim take a person centred approach, instilling confidence so that young adults with bleeding disorders are enabled to be partners in their care.

Taking little details into consideration makes the transition to the NCC a more enjoyable experience. Scheduling appointments at a less busy time, having in-depth conversations with each person and introducing the wider multidisciplinary team on a phased basis are all standard practices of a smooth and successful transition.

In the video below, David recalls his transition of care from CHI Crumlin to the NCC and explains how he overcame his anxieties from meeting with his consultant alone to finding a mode of transport to get to his appointment.

David was encouraged to build and grow in all aspects of his life, both in and out of hospital “they give you the opportunity to break that mould from what you used to be as a kid with your parents doing the talking, to having to do it yourself”.

The NCC encourages young adults to develop their skills for self-management, empowering them to set their own personal goals and importantly, achieve them.

The NCC and the Children’s Coagulation Centre in CHI are Comprehensive Care Centres for adults and children with bleeding disorders in Ireland and provide clinical services, research, training and education on a national level. Medical care for people with bleeding disorders is available on a 24-hour basis, with a consultant-led medical team contactable at all times in both centres.

Watch the video here ([link removed])

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Newly Diagnosed Information Day
Saturday July 16 2022 in the Castleknock Hotel, Dublin

We are delighted to announce that an Information Day for parents of newly diagnosed children with bleeding disorders will take place on Saturday 16th July 2022 at Castleknock Hotel in Dublin 15. This event is being organised by Children’s Health Ireland at Crumlin ([link removed]) and the Irish Haemophilia Society.

When a child is diagnosed with a bleeding disorder, parents may find this a very worrying time. This may be an especially hard time for those who have no family history of the condition. Some people talk about things while others bottle up their worries and concerns.

Parents and other members of the extended family need to have the reality of haemophilia carefully and repeatedly explained to them by members of the comprehensive haemophilia care team. After a while, parents may even find that it is not nearly as bad as they first imagined. It is important to remember that with good treatment a child with a bleeding disorder has every chance of growing up as an active, fit child who can participate in family, school and later working life. We hope that by organising this event, that we can bring families together in this way

This event which is free of charge to attend, will start at 11am with registration, followed by lunch at 12noon. The afternoon will consist of educational talks from 1pm to 5pm which will be chaired by Dr. Beatrice Nolan, Consultant Paediatric Haematologist.

If you are interested in attending this event, please call the Irish Haemophilia Society on 01 6579900 or email: [email protected] (mailto:[email protected]) , to book your place.

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Update For People With Bleeding Disorders Attending The NCC

We have received an update for members with bleeding disorders attending the NCC, please see below:

The global COVID19 pandemic is ongoing and we would like to thank you for your continued support and patience.

Although overall case numbers and numbers of people needing hospitalisation have improved in comparison to earlier waves, there is a considerable rate of transmission in the community. This is also affecting patients admitted in hospital and healthcare workers and as a result, hospital services continue to be severely affected in all hospitals throughout the country.

Unfortunately, this means that it is not possible to operate a “business as usual” service at the National Coagulation Service (NCC). In addition, the NCC team are experiencing significant short- and long-term staff shortages. We would like to update you on the situation regarding NCC services:

People with bleeding disorders who require admission or are having procedures:
* Planned surgeries continue to be severely curtailed in St James’s Hospital. It is not possible to predict when routine planned surgeries requiring admission will resume.
* Some day-case procedures are still proceeding.
* If you are given a date for a procedure of any kind in any healthcare facility, PLEASE inform the NCC as soon as possible using the contact details at the end of this update.
* Emergency admissions continue to be managed through the Emergency department.
* PLEASE contact the NCC by phone if you have an issue which requires urgent assessment – we prefer to know in advance if you are attending the ED as this will make the experience faster and smoother for you.
* Due to the ongoing pandemic, St James’s Hospital is still operating COVID and non-COVID admission pathways. H&H ward continues to be utilised by the Hospital in the COVID admission pathway and is therefore not available for use by people with bleeding disorders. The Admissions team is responsible for ward allocation and people with bleeding disorders will be admitted to a suitable general ward, depending on the clinical problem and priority.

NCC out-patient clinics and H&H assessment unit (HHAU) services:
* Patient consultations in the out-patient clinics are generally in person at present. Telephone or video call can be arranged in situations where appropriate to do so (with Consultant approval).
* Phlebotomy / Blood testing remains restricted to blood tests required as determined by the NCC medical team and is carried out in the HHAU.
* Planned and urgent treatments are being given in the HHAU by appointment only. The unit will operate from 08:30-17:00hrs Monday –Friday only.
* Where possible you should attend the HHAU on your own. If you require assistance, a person may accompany you but may be asked to wait outside of the HHAU area until you are ready to be discharged.

Update regarding COVID19 vaccination:

Where possible, we encourage everyone to avail of primary vaccination for COVID-19 or booster vaccines/additional doses in line with the HSE recommendations. Advice on management of vaccination for people with bleeding or thrombotic (clotting) disorders is on the NCC website (at the following links).

Bleeding disorders

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People on anticoagulation

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* People with bleeding disorders who need prior treatment for vaccination should contact their comprehensive care or treatment centre to arrange this. In some cases, where people live a long distance from a treatment centre, it may be possible to arrange treatment at a local hospital.

* There is no contra-indication to COVID-19 vaccination for people with a history of thrombosis or on an anticoagulant. There is no evidence of any link between mRNA vaccines and thrombosis at the present time.

Our contact details remain unchanged:

For emergency /urgent calls in relation to an active bleed or possible bleed or an urgent unplanned procedure: Monday–Friday 08:00-17:00hrs

Phone (01) 4103000 and ask for bleep 721

Phone (087) 9010301 to contact our Advanced Nurse Practitioner.

Out of hours: Monday- Friday 17:00-08:00hrs, weekends and bank holidays

Phone the St James’s Hospital switchboard (01) 4103000 and ask for the ‘on call’ Haematology Senior House Officer.

For non-urgent clinical queries: Monday–Friday 08:00-17:00hrs

Phone (01) 4103130 and leave a message with your name, hospital number and contact details

For queries in relation to non- clinical requests: Monday- Friday 08:30-17:00hrs

For example: appointments, documentation requests

Phone (01) 4162141 or (01) 4162142

Fax: (01) 4103570

Email: [email protected] (mailto:[email protected])

Postal address: National Coagulation Centre, St James’s Hospital, James’s Street Dublin 8, D08 A978

The situation is constantly evolving and we hope to see further improvements in the coming months. Thank you for understanding the pressures that the NCC team are experiencing and we promise to continue to work to resume normal services as soon as possible.

Keep safe,

National Coagulation Centre Team

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Temporary Changes To Anticoagulation Services In NCC

We have received an update for members with bleeding disorders attending the NCC, please see below:

For people on Anticoagulation therapy attending the National Coagulation Centre:

The global COVID-19 pandemic is ongoing and we would like to thank you for your continued support and patience during this healthcare emergency.

Due to severe staff shortages and the time lag in recruitment and training of staff, we regret that some services provided by the SJH anticoagulation team have to be curtailed as a temporary measure.

The following update on planned provision of Anticoagulation services is effective until 31 July 2022.

Warfarin monitoring:

Out-patient clinics for monitoring of patients on warfarin will continue at full service (on Monday, Tuesday, Thursday, Friday).

Directorial anticoagulant (DOAC) clinic referrals:
1. New referrals:
No new DOAC clinic referrals will be accepted until 1 August 2022.
In the interim, your hospital medical team and General Practitioner will be able to prescribe and manage your DOAC medication.
2. Return patients (on 12 monthly review):
Current review appointments will be deferred and rescheduled after 31 July 2022.
3. Return patients (on 3-6 monthly review):
These patients are on a more frequent review schedule for clinical reasons and will be seen as scheduled.

Our contact details remain unchanged:

For patients who attend the Anticoagulation Service

For Non Clinical Queries

For queries in relation to non-clinical requests: appointments, documentation requests….

Monday – Friday 08:30-17:00
Please call 01-4162637 Fax: (01) 410 3570
Email: [email protected] (mailto:[email protected])
Postal address: National Coagulation Centre, St James’s Hospital, James’s Street Dublin 8 D08 A978

Non Urgent Clinical Queries

For non-urgent, clinical queries in relation to upcoming procedures, treatment queries…

Monday-Friday 08:00-17:00

Please call the nurse on 01-4284403 (please leave a message with your name, hospital number or date of birth, contact details and information in relation to your query and a nurse will return your call) For Urgent Care In the event of an emergency please go to your nearest emergency department without delay.

For Urgent Care

In the event of an emergency please go to your nearest emergency department without delay.

The situation is constantly evolving and we hope to see further improvements in the coming months. Thank you for understanding the pressures that the NCC team are experiencing and we promise to continue to work with you and for you to resume normal service as soon as possible.

Keep safe,

National Coagulation Centre Team.

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VHI Women’s Mini Marathon
Registration Open Now

Entries are now open for the VHI Women’s Mini Marathon 2022, which will be taking place in Dublin City on Bank Holiday Sunday 5th June.

In 1983, 9,000 incredible women entered Ireland’s first Women’s Mini Marathon in Dublin. In 2022, to celebrate its 40th magical year, WMM will stand for Women Making Magic!

Now one of the largest women’s event in the world of its kind. Over €225 million has been raised for charities, not to mention the hearts, souls and spirits raised every single step of the way. This special year, lets recognise and celebrate their magic.

We are very grateful to all the ladies who take part in the Mini Marathon for the I.H.S. every year, your support for the work of the Society is really appreciated. An event like this is so important, not only to raise funds but to raise awareness of haemophilia and other bleeding disorders.

So, if you have a bleeding disorder or if you are the mother, sister, daughter, niece, cousin or friend of an adult or child living with a bleeding disorder, now is your chance to show your support by taking part in this year’s VHI Women’s Mini Marathon to raise funds for the I.H.S.

For more info on VHI Women’s Mini Marathon or to register, please visit vhiwomensminimarathon.ie ([link removed]) .

If you would like to raise funds in aid of the I.H.S. or you would like more info about fundraising, please contact Nina in the office on 01 6579900 or email [email protected] (mailto:[email protected]) .

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Living Well
Building Better Caregivers

Are you a caregiver?

Building Better Caregivers classes are highly participatory, where mutual support and success build the participants’ confidence in their ability to manage their caregiving tasks and maintain a fulfilling life.

What is the Living Well Building Better Caregivers programme?

Living Well is a free online group programme, delivered over seven workshops via WebEx (1.5hrs x 1 introduction & 2.5hrs x 6). This is self-management programme is for caregivers with the aim of improving your quality of life to better manage your daily health.

Living Well can help you develop the skills and confidence to manage your health condition(s). It is delivered by two trained leaders, one or both of whom are peers who are or have been family caregivers.

Workshop Topics

Skills that may lead to stress reduction for caregiver and their care partner.

Topics include:
* Self-care methods to improve caregiver’s health
* Dealing with difficult emotions
* Managing difficult care partner behaviours
* Planning for the future
* Finding resources
* Improving communication skills with family and friends
* Family meetings
* Communicating with health professionals and health care system
* Action-planning, problem-solving, decision-making and much more

Why join the Living Well programme?

People who are supported in this way increase their knowledge, skills and confidence to better manage their health in partnership with their health care provider.

When?

Starting on Wednesday April 27^th from 7.00pm – 9.30pm for 7 weeks.

For more information or to register, contact the Living Well Coordinator Leah Harrington: 0873654392 or Email: [email protected] (mailto:[email protected])

Places are still available and the programme is here ([link removed]) .

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A Shout Out to Members

Do you have any spare tourniquets or bandages? A friend of a member drives a bus regularly to the border between Poland & Ukraine.

If you have any of these hugely useful items, could you drop them off or post them to the office? If you have any questions, contact the office via [email protected] (mailto:[email protected])

Thanks in advance.

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EHC Educational App EHCucate goes live

The new educational app from the EHC, EHCucate, has gone live and you can download it to your device from the iOS App Store and Android Google Play.

With the sheer volume of information on rare bleeding disorders and novel therapies, looking for answers can feel overwhelming, complex and confusing!

This is why the EHC has processed years of research and publications from reliable and specialized sources to create EHCucate – an educational and dynamic app tailored to you!

The App provides info in an accessible and engaging way with easy navigation and comes with an extensive glossary of terms.

You can bookmark elements you want to add to your library, improve your knowledge and test your understanding with many quizzes, explore a variety of in-app media, track your progress, check our suggestions for further exploration on your topics of interest.

EHCucate is the ultimate resource repository and educational tool for patients, patient advocates and anybody interested in novel therapies for rare bleeding disorders.

You can now download it on your device from the iOS App Store and Android Google Play.

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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
** Irish Haemophilia Society ([link removed])

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

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

** National Haemophilia Council ([link removed])

** Barretstown Camp ([link removed])

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

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