SCAD IRELAND
SCAD IRELAND was established in 2018, by Pauline O’Shea, a SCAD survivor. The aim: to generate SCAD awareness, education and support in Ireland. For patients, it offers connection, emotional support, and up to date information on the condition. For the public, it offers awareness of a condition, largely unheard of. For the medical profession, it offers education on up-to-date SCAD research studies, treatment best practice and accounts of the patient experience, the latter often involving issues around diagnosis and poor medical management of the condition, resulting in poor outcomes for the patient.
Background: Pauline’s Story
Having suffered SCAD, misdiagnosis, repeated heart attacks, cardiac arrest, open-heart surgery (CABG) and a diagnosis of heart failure, and ICD implantation following her experience of SCAD in 2012, Pauline O’Shea knew there had to be a better way for SCAD patients than the journey she had experienced. Seeking International best practice methodologies, research and clinical leads on the
condition, her aim was to provide an educational platform for the condition in Ireland, for both the medical profession and future SCAD patients, so as to avoid the pitfalls of her care being repeated.
In addition, at an emotive level, she knew how lonely and devastating a journey it was to have a sudden heart condition like SCAD enter life while in one’s thirties, without knowing anyone else in the same boat. She knew too of the fear for the future that existed because of it all, especially as it happens at a stage of life where many of its patients have young children, who they worry about being around to raise. To assist with these difficult emotions, Pauline also felt that a national online support
group for these patients was necessary, so as to connect patients on the island of Ireland, who may otherwise not meet each other due to the rareness of the illness, as well as the geographical spread of its patients.
She therefore felt SCAD IRELAND, could connect, support, educate and bring awareness to SCAD, throughout the island of Ireland, for the betterment of the SCAD patients living on that island.
Growth of SCAD IRELAND 2018 to Today…
Using social media apps, facebook and whatsapp, landing pages for SCAD IRELAND weredeveloped online. Working with international SCAD groups in the UK, at Mayo Clinic, SCAD research.org, SCAD Alliance and SCAD survivors, who had members from all over the world, we promoted these new groups on their social media sites, knowing that some of their members would likely be from Ireland. It worked and many of their Ireland patients registered with our SCAD IRELAND groups.
In addition, we worked with the charity sector in Ireland to refer people to our group, which charities like the Irish Heart Foundation agreed to, providing a direct link from their charity web page to the SCAD IRELAND fb page.
Since 2019, we have presented on SCAD at a number of medical conferences and events, in hospital settings and in Universities, including INCA (2019), IACR (2020), UCC (in 2020), RCSI (2021) NIPC (2021) with view to providing the latest information on SCAD research and treatment best practice to these groups, as well as information about our supports for SCAD patients. We now also have patients being referred to our online groups, through some of the medical professionals who attended those talks.
SCAD Ireland Members
- Membership has grown in just over two years, from an initial five patients, to now over 90 patients, all living on the island of Ireland.
- Significantly year on year, the pace of growth and numbers and frequency of requests to join our group has increased significantly, from about 20 per year in year one to over double that number two years later, with more than 40 patient requests during the year 2020 alone.
- 80-90% of our group are female, with an average age of approx. 45.
- Many of the SCADs experienced were not post-partum, but post exercise, though we do have postpartum members, which are estimated at about 20% of our SCAD population.
- Re-occurring SCAD has been experienced by 10-20% of group.
- Many in our group have tested positive for FMD.
Activities of SCAD IRELAND
Presentations/Education
Members present at patient and medical conferences/Universities and hospital settings, so that information about SCAD IRELAND can reach medical staff. We have so far presented to INCA (2019) Pauline O’Shea, IACR (2020) Shirley Ingram, UCC (in 2020) Jim Lehane, RCSI (2021) Pauline O’Shea, NIPC (2021). Pauline O’Shea is also scheduled to present on Womens heart issues and SCAD at the EuroHeartCare ACNAP Congress 2021, as well as at the BACPR Conference in Oct. 2021.
Information – online and in print
Members are also working with the Irish Heart Foundation by way of developing a new patient leaflet on SCAD will be available later in 2021.
Media
We also work on media opportunities with the Irish Heart Foundation, Croí and the Global Heart Hub on radio, in press and through online videos, to generate awareness of SCAD amongst the general public. We have also had SCAD covered in national and regional radio, by way of a separate campaign on COVID vaccine prioritisation in 2021, in which Pauline O’Shea featured.
Patient Support
Our online support groups are available on Facebook and WhatsApp. We also have a phone service available for new patients who may not wish to engage in public discussion. Our supports aim to connect new patients with other SCAD patients, facilitate them asking questions, getting up to date information and research on SCAD, find those patients living closest to them or of similar age, and generally to share. The emotional support offered by group members to each other is phenomenal.
Annual Gathering
Finally, we conduct an annual gathering for all patients on the island of Ireland once a year, hosted at the IHF buildings. We usually invite guest speakers from the medical profession to speak to our audience as well as patient speakers to give their accounts.
The pandemic has however affected our ability to offer this service, which has been very difficult for our newer SCAD patients, who are missing out on that physical peer support.
SCAD IRELAND – Our Links
There has been much collaboration in research on SCAD at North American and European level in the last few years and it is gaining momentum, with new research studies popping up all over, including Mayo Clinic, Cleveland Clinic, Vancouver, Leicester and the European Society of Cardiology.
There have been some interesting findings… including discoveries that post-partum SCAD only represents about 10% of cases, that SCAD may be the main cause of heart attacks in the under 50s and that a statin might not be good for the SCAD patient.
Here are some of the links that we offer to our patient group and those from the medical profession, who attend our presentations:
SCAD IRELAND: Concerns/Goals in Cardiology
SCAD patients worldwide, including the SCAD patient experience in Ireland have experienced many challenges in relation to their patient experience:
Many of the treating doctors in A+E Emergency rooms have not come across SCAD before and often dismiss the symptoms of the SCAD patient as “anxiety” or “stress”, thereby delaying the patient’s access to a cardiac specialist, sending them home in error undiagnosed, or recommending the patient be seen by cardiology, only when their condition has deteriorated significantly.
Even when the SCAD patient makes it onto the cardiology ward, once again they can come up against poor knowledge and up to date information in relation to SCAD from their treating cardiologist.
When SCAD is diagnosed, poor communication or explanations are often offered to patients in relation to their SCAD, the tests required and meaning of the test results, with patients often coming online onto our facebook group, from their hospital beds seeking answers from the group on what SCAD is, why they have gotten it, and what the test results or terms they are hearing mean. There is also little to no explanation of medication being taken, what the future now holds for the SCAD patient and what they should expect in terms of their recovery.
There are little if any follow-on services offered to SCAD patients, other than cardiac rehab (although even this has not be happening over the last twelve months due to the pandemic), though there is no specific cardiac rehab programme running in Ireland for SCAD patients.
Post SCAD clinical cardiac care is difficult for many patients. Aftercare for SCAD patients in public healthcare settings, presents as occasional follow-on check-ups, and often our members meet a new cardiologist at each check-up, some of whom have never heard of SCAD and are unable to answer the many questions the patients have. In the private health setting, even with a regular cardiologist, the patient is often more up to date on SCAD research and treatment guidelines than the cardiologist, which can meet with conflicting medical opinion on the treatment or medication plan ahead.
Moving Forward
Therefore, we in SCAD IRELAND would like to work with cardiac healthcare professionals in Ireland to;
Suggested methods:
Cardiologists educating their colleagues
Placing SCAD on the agenda of Cardiac / Hospital meetings/ updates, referencing the latest research and concerns in relation to the patient experience in Ireland, with specific emphasis on educating colleagues in Emergency medicine on the condition.
Consultants/ Hospitals / Cardiac students to hear the SCAD patient voice
to understand the experience of SCAD. In SCAD IRELAND we have many members willing and able to present at cardiac conferences and events, and/or in educational institutions teaching the cardiac professionals of the future, to become aware of SCAD / living with a rare cardiac illness / being a “young” heart patient / women’s heart care experience’s, in the ER and in Cardiology. We would hope that listening to the SCAD patient voice would bring some positive changes to the patient experience in Ireland.
Cardiac care teams to promote and inform patients about SCAD IRELAND
so that patients can receive the information and support that will help their wellbeing after post SCAD diagnosis.
Forging links between SCAD IRELAND and the Irish Cardiac Society
for optimal mutually beneficial patient care strategies going forward.
The appointment of a Consultant Cardiologist/s specialist on SCAD in Ireland
to present to and inform our group.
Contact:
SCAD IRELAND looks forward to continuing to grow and advance the care and support of SCAD patients in Ireland. For more information, contact us:
SCAD IRELAND Patient Support Group