End of Year Review: Thrombosis Ireland
Written by Ann Marie O’Neill, CEO, Thrombosis Ireland
Our Achievements, Challenges & Opportunities
Blood Clots (Venous Thromboembolism or VTE), is a leading cause of death and disability worldwide, with 544,000 VTE-related deaths every year in Europe alone. Up to 60% of VTE cases occur during or up to 90 days after hospitalisation, making it a leading preventable cause of hospital death. It is also the leading cause of maternal death in our Maternity Hospital. VTE is a life-changing and traumatic event. Among survivors of VTE, a significant burden of chronic morbidity (including painful postthrombotic syndrome) has been reported and it is associated with a major impact on quality of life. The devastation that it can cause to survivors and the families who have lost loved ones, should not be understated, therefore, there is an urgent need to invest in national awareness and education of patients & healthcare professionals. Blood clots can happen to anyone at any time. They usually occur when a person is experiencing more than one risk factor at any one time in their life. They are very preventable and easily treatable if caught on time but potentially fatal if the signs are missed. This is why it is so important that every person knows risk factors, signs to watch for and the importance of getting medical attention fast. Thrombosis Ireland was officially formed by Patients in 2016 to address the lack of awareness and education for patients and Health Care Professionals about VTE and the complicated anticoagulation medication involved in treatment. We also have grave concerns about the absence of any co-ordinated physical or psychological recovery supports for blood clot patients and we will continue to advocate for improvements.
7 years on we are a fully voluntary, transparent, not-for-profit company limited by guarantee with charitable status and a strong determined and dedicated Board of Directors.
Our Mission
- To promote awareness of thrombosis among patients, medical staff and the general public nationwide.
- To provide support, education and advocacy for blood clot patients & their families.
- To save lives in particular from hospital acquired VTE through awareness and the introduction and implementation of a mandatory VTE assessment on admission to hospital and encourage distribution of the Blood Clot Alert Card to all patients attending our Hospitals as in or out patients.
We believe that we will achieve our mission by creating national awareness of the risks & signs of blood clots, advocating for all patients to receive a VTE risk assessment and the Blood Clot Alert Card. We will also work closely with our VTE HSE National Lead, Prof. Fionnuala Ni Ainle and the National HSE VTE Program (NVTEP), all health care professionals, our patients and the general public. We truly believe that we all have a part to play and TOGETHER WE ARE STRONGER!
Our Biggest Challenge
Our biggest challenge is to reach every household in Ireland with our life saving message. This requires a comprehensive & expensive national campaign on all platforms from TV to Radio and through social media. This is our Everest and highlights our 2nd biggest challenge – funding for these kind of campaigns and our day to support, awareness & education service. We must ensure that the these essential services will be available to everyone affected by blood clots into the future.
We are a fully voluntary charity and do not receive any direct core funding support from our Government or Health Department.
We could not do the work we do without the kind support of our grant sponsors. These grants are for use on specific awareness/ education projects and we are limited on what we can use the money for. Our challenge then is to raise enough core funding to pay for our rent, phone lines, printing, postage, insurance and auditors fees. We are dependent on fundraising events and sponsorship & donations from our members and the public for which we are truly grateful but this involves walking a tight rope as we never know how much we will manage to raise or receive. We are small organisation and constantly worrying about raising income is very time consuming when we have many other lifesaving & patient support projects to be working on. If you know a company, who would like to support us to raise awareness about bloods and help patients
and their families, or you are an individual and you would like to host a fundraiser for us, please don’t hesitate to reach out to us. We would love to talk to you and share our mission.
Our Achievements
2023 has been a really busy year for Thrombosis Ireland. Our impact has grown and we can see this by the number of patients reaching out to us and receiving our recovery support pack. We supplied 40 event kits in 2022 but this year we provided & delivered 72 complete kits, including tablecloth, balloons, posters, banner, pens, lanyards and patient information booklets for 72 Blood Clot Awareness Events in every General and Maternity Hospital throughout the country and also to our first responders in our National Ambulance Service, Lifeline Private Ambulance Service and Dublin Fire Brigade. We would like to thank all those who participated this year and all the work and effort involved.
The work of our Health care professionals does not go unnoticed. In 2023 we hosted our 3rd VTE Exemplar Award Competition & Award Ceremony, which takes place at the International Conference, VTE Dublin each year. These awards highlight achievements in healthcare settings in a number of areas of Blood Clot prevention, treatment, recovery & research and this year we introduced a new category, ‘Best Student VTE Research Project’ to encourage early researchers. Winners presentation available at
https:// thrombosis.ie/wp-content/ uploads/2023/10/2023-WinnersPresentation-from-Google-1.pdf
Winners of our 2023 Thrombosis Ireland VTE Exemplar Awards:
Best VTE Quality Improvement in a General Hospital: Eimear Roche, VTE Management QI Team, St. James Hospital, Dublin.
Best VTE Quality Improvement in a Maternity Hospital: Joanna Desmond, ADM, Limerick University Maternity Hospital
Best VTE Scientific Advancement Award: Dr Barry Kevane & IEHG VTE Working Group
Best Student VTE Project: Gavin Buckley, Cork University Hospital VTE Warrior Awards 2023
These special individual awards, honour their commitment on a daily basis to ensure VTE Patients receive optimal safe care and education in a truly compassionate and holistic way.
Mary Savage, ANP, Our Lady of Lourdes Hospital, Drogheda, Co. Louth.
Noirin Bannon, Programme Manager, Ireland East Hospital Group.
Emily Bury ANP, Acute Medicine Unit, St. Vincents University Hospital, Dublin.
Virginia Silvari, Chief II, Pharmacist, Cork University Hospital, Cork.
Bibi Bassa, Emergency Medicine Registrar, Mater Hospital, Dublin.
Best Maternity Hospital
Aana Dineen, Senior Clinical Pharmacist & Consultant
Gynaecologist, Dr. Zibi Marchocki, Cork University Maternity Hospital.
Best Hospital 2023
Emer O’Sullivan Q&R & Patient Safety Manager & Carol Walsh
ANP Acute Medicine at Bantry General Hospital, Bantry, Co. Cork
Best Hospital Group 2023
CEO, Declan Lyons, Ireland East Hospital Group.
VTE National Champion
Reserved for an individual or hospital who has gone above an beyond to improve VTE awareness, education, diagnosis, treatment and recovery services for their patients.
Dr. Karl Ewins, Consultant Haematologist, Beaumont University Hospital, Dublin.
We are proud to showcase our new Patient Information Resources for 2023:
Our greatest pride is with the Patients who ‘Stand Up and Shout Out’ for Awareness of blood clots by sharing their personal stories in writing or through video. We are so grateful for their courage or the courage of their families to stand with us to help save others. Read or watch the Personal stories available on our website:
https:// thrombosis.ie/patient-videos/
Working with Ireland East Hospital Group, we trialled and finalised our ‘Blood Clot Alert Card QR Code Poster’ which provides QR codes for our HSE/Thrombosis Ireland Blood Clot Alert Card in 20 Languages and approved by our National VTE Program for National use. https://thrombosis. ie/wp-content/uploads/2023/10/ NVTEP-Thrombosis-Ireland-QRCode-Poster-FINAL-PDF.pdf
Working with The Rotunda Hospital and The University of Medicine & Health Sciences (RCSI), we now have our first National ‘Blood Clots in Pregnancy & After Birth’ patient information booklet approved by our National VTE Program for use nationally. https://thrombosis.ie/wp-content/ uploads/2023/10/Blood-ClotsIn-Pregnancy-and-After-BirthBooklet-FINAL-VERSION.pdf
Our thanks to Dr. Beverly Hunt, Thrombosis UK and Dr. Louise Newson, The Menopause Charity, we now have our first patient information booklet on ‘Menopause & Blood Clots’ approved by our National VTE Program for use nationally.
https://thrombosis.ie/wp-content/ uploads/2023/06/Final-PDFNVTEP-Menopause-and-ClotsBooklet-v2023-06-10a.pdf
Breaking News to be proud of was the announcement by International Organisation World Thrombosis Day was the award of International World Thrombosis Day Patient Ambassador of the Year 2023 for my work to raise awareness about VTE In Ireland and Internationally and to advocate for Blood Clot Patients and their families. I am so proud to receive this award on behalf of my amazing Volunteer Team in Thrombosis Ireland.
Opportunities and Developments for 2024
As a member of our National VTE Program, Clinical Working Group we will continue to be the voice of the Patient to advocate for mandatory VTE Risk Assessment of every patient, clear National Guidelines on Prevention, Treatment & Recovery Pathway’s to be implemented in every hospital in the country so that no matter what hospital you attend, you get the same high standard of VTE care.
We will work closely with our HSE National VTE Program to develop more standardised National Patient Information booklets for use throughout every hospital in the country.
We will also continue our work to develop a Blood Clot Recovery Program to include Patient Education, Physical Recovery and Psychological Recovery.
The Thrombosis Ireland Education & Support Road Show ‘Thrive with Thrombosis’ will visit a number of counties throughout 2024 and if you would like to work with us to host a Patient & Staff VTE Education Event in your Hospital, don’t hesitate to reach out to us.
Patient Education is crucial for optimal recovery and we are determined to ensure all blood clot patients receive education and support to aid their recovery.
Listen out for our Blood Clot Awareness National Radio Advert on RTE1, Newstalk and Today Fm in January and February 2024 to kick of the year with a bang. Our mission is to ensure that every household in the country will know the what increases their risk of getting a blood clot, the signs and symptoms to watch out for, things you can do to prevent a blood clot and what to do if you suspect a clot. We will not stop until this is a reality. For more information go to our website: www.thrombosis.ie
Read the full magazine: December HPN
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