Irish Haemophilia Society E-zine: April 23, 2021

Irish Haemophilia Society eZine: April 23, 2021
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An Update From I.H.S. CEO

Proposed Physiotherapy / Exercise Programme

The Society are initiating a new programme of Physiotherapy/Exercise classes for members as part of our new focus on lifestyle and healthy living. Last year, a pilot programme was conducted where 8 people with haemophilia participated in a 6 week programme run by the haemophilia physiotherapists from St. James’s Hospital. The Society provided Therabands (light flexible exercise bands) by mail to the homes of the participants.

The physiotherapists then undertook a 6 week programme of exercise with the participants which was geared to the fact that they had Haemophilia and were all in the same age demographic group. The programme was very successful and was greatly enjoyed by all the participants who found it very beneficial.

We are now actively recruiting participants for the first 4 groups of 8 people. 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 hospital: Sheila Roche and Mark Mc Gowan. 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 1: People with Severe Haemophilia, age 35-50 years
Schedule: Tuesday, May 4, May 11, May 18, May 25, June 1, June 8,
Thursday June 17 (Education evening)
Time: 7-8pm

Group 2: People with von Willebrand Disorder, age 18 years or older
Schedule: Thursday, May 6, May 13, May 20, May 27, June 3, June 10,
Thursday June 17 (Education evening)
Time: 7-8pm

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 [email protected] (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.

Retirements from Treatment Centres

This past month has seen the retirement of 2 people who have provided long and greatly appreciated service to people with inherited bleeding disorders.

Maura Sweeney has retired from her nursing post at Galway University Hospital. Maura has been the main Haemophilia nurse at the haemophilia centre at GUH since 2001. She will be missed and her contribution will not be forgotten.

Paddy Fleming has also retired as the Dentist who provided excellent dental care to many children with Haemophilia and other inherited bleeding disorders at Children’s Health Ireland, Crumlin for the past 30 years. He will also be missed and his contribution will not be forgotten.
Brian O’Mahony,
Chief Executive
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General Update from National Coagulation Centre
:: April 22 ::

We have received an update regarding services in the National Coagulation Centre - please see below:

General Information
* Patient consultations will continue either by telephone or video call. Face to face consultations will be arranged in situations where the consultant deems it necessary.
* Phlebotomy / Blood testing remains restricted to blood tests required as determined by the NCC medical team.
* The H&H Assessment Unit (HHAU) is open to patients for urgent treatment only and this must be discussed with the NCC team before you come to St. James’s Hospital. The unit will operate from 08:30-17:00hrs Monday – Friday only.
* Where possible you should attend the HHAU on your own, however, 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.

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 Please call (01) 4103000 and ask for bleep 721 or call (087)9010301 to contact our Advanced Nurse Practitioner.

Out of hours Monday-Friday 17:00- 08:00hrs weekends and bank holidays: Please call the St James’s Hospital switchboard (01) 4103000 and ask for the ‘on call’ Haematology Senior House Officer.

For Non Clinical Queries

For queries in relation to non-clinical requests: appointments, documentation requests…. Monday- Friday 08:30-17:00

Please call 01-4162141; (01) 4162142
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

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

If you are admitted to another hospital, ensure that the staff at that hospital, are aware of your bleeding disorder and ask them to contact the team in St James’s Hospital through our contact details on the St James’s hospital website.

The situation is constantly evolving but hopefully improving. We endeavour to keep you informed of any changes through this forum.

Keep safe,

National Coagulation Centre Team
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Update: Covid-19 Vaccination in People with Bleeding Disorders

We have received an update from the National Coagulation Centre (NCC) regarding Covid-19 vaccination in people with bleeding disorders, you can read it below:
* Any person with a bleeding disorder who is offered a vaccine appointment by their GP or via the HSE portal should take it as this is likely to be the fastest route to access vaccination. Advice for patients is on the NCC website in relation to treatment prior to vaccination for certain people with more severe bleeding disorders. Many people with milder bleeding disorders or who are on Hemlibra won’t need treatment before – just check the list here ([link removed]) to see which applies to you.
* People who need prior treatment 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. Alerting your treatment centre is the vital first step!
* For people who have had Hepatitis C or HIV infection, these conditions will result in categorisation as group 5 (ages 65-69) or group 7 (ages 16-64), according to the HSE roll-out plan ([link removed].) .
* A list of people with these conditions has been given to the team in SJH who are co-ordinating the vaccination of Groups 4, 5 and 7 for people attending certain hospital departments.
* At the moment, they are finishing people in Group 4.
* Group 5 will be next and will be called during the month of May and group 7 after that.
* If you are in groups 5 or 7, you will be contacted to ensure that you haven’t already had a vaccine, e.g. from your GP or because you work in a healthcare setting.
* If you have not already had a vaccine, you will be invited to attend a vaccination centre in Richmond Barracks in Dublin which will be operational 7 days a week from Monday 26th April 2021. If you are scheduled on a weekend day and need to get treatment before, the NCC team will arrange to have your treatment given in the NCC but please tell us as soon as you get a date for your vaccine so that we can make arrangements.
* If you are a patient registered in the Cork or Galway centres, the teams there are reviewing the lists of people attending and you may be contacted by them to arrange a local vaccination appointment if you need it.
* For all other people with bleeding disorders, you will be called by age group in due course – either to have vaccination with your GP or at a central vaccination centre, via the HSE portal. Just hang in there, your turn is coming!

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Ward Designation Update from St. James’s Hospital

We have received a communication (on April 23) regarding ward designation for people with bleeding disorders who require admission to St. James’s Hospital. You can read it below:

Update regarding ward designation for people with bleeding disorders who require admission to SJH:
* The H&H ward is currently required for the management of the COVID19 pandemic and is therefore not available for use by people with bleeding disorders at the present time.
* While it is not known how long this situation with H&H ward will continue (being dependent on developments in the pandemic), the CEO of SJH, Ms Mary Day has given a firm commitment that the H&H ward will be available again for admission of people with bleeding disorders when the ward returns to general use. Mary Day also gave this commitment to the Chair of the Haemophilia Council and to the CEO of the IHS at a meeting in October 2020.
* In the meantime, the SJH corporate team is working to designate a specific ward for people with bleeding disorders to be admitted if required, incorporating the NCC orthopaedic surgery programme also. A further update on ward designation will be given when details have been finalised.

While we recognise that people with bleeding disorders are very anxious to get back to H&H ward and contributed enormously to the design and build of that ward, the single rooms are a vital part of the hospital’s efforts to contain COVID19 and prevent outbreaks around other wards in SJH. Thanks to all of the patient community who have been so understanding of the challenges we have faced in designating an interim ward for people attending the NCC over the past 13 months.

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World Haemophilia Week 2021
:: Focus on von Willebrands Disorder (VWD) A Recap ::

Von Willebrand Disorder was the focus of World Haemophilia Week this year. We fully appreciate the need for greater education about VWD, greater public awareness and greater emphasis from the Society. To this end, VWD was the focus of our events this year.

We had two webinars; one on ‘VWD Guidelines & Research for Diagnoses & Treatment’ with Dr. Michelle Lavin & Professor James O’Donnell and another on ‘Living with VWD’, a discussion panel with I.H.S. members Breda Quealy, Barry Quealy, Donal McCann & Shannon Carey. Two great and informative webinars that you can watch here ([link removed]) .

We launched our new VWD booklet and animated video on social media that we hope will help raise awareness. We also rolled out a social media campaign with Breda Quealy & her son Barry who both have VWD. In this series of video clips, they give an insight into living with VWD. You can watch the compilation of clips here.

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We also garnered some very good national coverage over the week, the highlight being Shannon Carey and Dr Michelle Lavin’s appearance on Virgin Media’s Ireland AM, on Saturday April 17. If you missed it, you can watch it here ([link removed]) .
Von Willebrand Disorder (VWD) is the most common inherited bleeding disorder and 90% of people with VWD globally remain undiagnosed.

It is a complex condition. We hope our activities over the course of the week helped raise awareness and this was not a one off, we are committed to a much greater focus on raising awareness of VWD and advocating for better treatment of persons with VWD.

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Upcoming Webinars

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

Wednesday, April 28, 2021 @ 6pm:
‘An Update from Barretstown’

Wednesday, May 05, 2021 @ 6pm:
‘Covid-19: An Update on Vaccines & Side Effects’
with Professor James O’ Donnell

Wednesday, May 12, 2021 @ 6pm:
Clinical Trials: An Update from the NCC
with Dr Niamh O'Connell, NCC St. James's Hospital


Wednesday, May 19, 2021 @ 6pm:
‘Clinical Trials – An update from CHI, Crumlin’
with Aileen Molloy, CHI @ Crumlin

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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Innovative education tool will make a big difference to children with Haemophilia

Students from the Creative Media Department of Munster Technological University working in collaboration with Children’s Health Ireland (CHI) at Crumlin and the Irish Haemophilia Society, are creating an innovative education tool for children with Haemophilia and their families.

“My Buddy Cormac“ a positive awareness animation about Haemophilia, focuses on the experience and challenges faced by children with Haemophilia when treatment in hospital is required. The story is told from the perspective of a child and delivers an enlightening and creative take on events.

The project is being developed by work placement students, Jack Finnerty – Lead Animator, Illustrators and Storyboard Artists – Grace O’ Shea, Jack Roche, and Kate Mc Donnell, who are all studying a BA (Hons) in Animation, VFX and Motion Design. Patrick Lynch is the Music Composer/Sound Designer and Script Writer and is studying a BA (Hons) degree in Music Technology at MTU, Kerry campus.

“My Buddy Cormac” is already reaping the rewards of its success. According to the students/creators “Working with people we deeply admire and respect and being part of a project that will bring awareness to this condition while also imparting reassurance to young children and families experiencing the condition has rendered “My Buddy Cormac” a milestone in all of our careers”.

The project is being coordinated by lecturers, Rosie Dempsey who is the Industry Coordinator and Marty Boylan, Animation Course Leader. Rosie and Marty say the “collaboration with Children’s Heath Ireland at Crumlin has been an invaluable opportunity for students to apply their knowledge to real world problems, while also benefiting from the enriching experience of seeing first-hand the amazing work the medical team undertakes at Children’s Health Ireland”.

A progress report on the project was issued today to mark World Haemophilia Day.

The animation and visual guide, which is aimed at children aged between eight and 12, will be ready for release in May and will be made available on the CHI Crumlin and Irish Haemophilia Society websites. Some images of the guide have been released today.

Dr Beatrice Nolan, Consultant Haematologist at CHI at Crumlin, said that the students were developing an educational aid that will make a big difference to young children with haemophilia and their families.

“The animation developed by MTU students will make learning more fun and enjoyable and help the child and family develop a deeper understanding of Haemophilia and joint bleeds. It will be much easier for families to access this educational tool online and we hope to develop more in the future,” said Dr Nolan.

Today is World Haemophilia Day, which is an international awareness day for haemophilia and other bleeding disorders. It is held annually on April 17, date of the birthday of Frank Schnabel, founder of the World Federation of Haemophilia. Since 1989, World Haemophilia Day is the day the whole bleeding disorders community comes together to celebrate the continuous advances in treatment while raising awareness and bringing understanding and attention to the issues related to proper care to the wider public.

Haemophilia describes a group of inherited blood disorders in which there is a life-long defect in the clotting mechanism of the blood. It is associated with recurrent spontaneous bleeding, particularly into joints and muscles, from early childhood. A child’s diagnosis of Haemophilia is life-changing in its effects on both the child and the parents, who face a future of managing bleeding risk while trying to provide the child and his siblings with as normal a life as possible. There are approximately 860 people in Ireland suffering from Haemophilia of which 240 are under 18.

The theme of this year’s World Haemophilia Day is: “Adapting to change: sustaining care in a new world ([link removed]) ” and, according to Dr Nolan, children with haemophilia are no different to anybody else in having to deal with the impact of the COIVD-19 pandemic.

“The COVID-19 pandemic is having a major impact on people with a bleeding disorder so that objective has never been more important,” said Dr Nolan. “The Haemophilia community is made up of a great diversity of people—from patients and their families, to physicians, nurses, physiotherapists, psychologists and researchers—each of whom has been affected by the pandemic in a different way.”

The Haemophilia service at CHI Crumlin, which is led by Dr Nolan, has a dedicated team of Clinical Nurse Specialists, a Physiotherapist, a Psychologist, and a Social Worker who provide comprehensive care to children and their families with haemophilia and other bleeding disorders.

Brian O’Mahony, Chief Executive of the Irish Haemophilia Society, said: “This project provides information in a format which will be used by children with haemophilia and in language which is age appropriate. This will be of great benefit in helping educate the children about their bleeding disorder” stated Brian O Mahony, Chief Executive of the Irish Haemophilia Society.

There are three haemophilia Comprehensive Care Centres in Ireland. All three centres are certified as European Haemophilia Comprehensive Care Centres (EHCCC):

– Children’s Health Ireland at Crumlin

– The National Coagulation Centre (NCC) in St. James’s Hospital in Dublin

– The Coagulation Centre in Cork University Hospital (CUH)

In addition, University Hospital Galway functions as a Haemophilia Treatment Centre for adults and children. The Haemophilia Treatment Centre in Galway University Hospital is certified by the European Haemophilia Network (EUHANET).

The centre at CHI at Crumlin will move to the new children’s hospital on a shared campus with St James’s Hospital which will benefit our patients and their families.
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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;
* 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)
* 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
* 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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