Research update September 2021

Beat SCAD hosted an online event on 25 September to update supporters on our activities and the SCAD research.

Chair Trustee Rebecca Breslin kicked off by thanking all the volunteers who have helped us this year. From patients telling their stories to help educate healthcare professionals, to people using their IT skills to help our systems become more automated and efficient, all our volunteers have made major contributions.

Rebecca discussed how the fundraising our supporters have done have enabled us to donate money to the research project, which in turn has led to findings that have contributed to the global research effort and many research papers on SCAD. Despite the Covid pandemic, our supporters have done some fantastic fundraising, so thanks go to everyone who has contributed.

There have been various awareness activities this year, mostly online due to Covid. This included an article by Lottie Moore, Public Policy Analyst, who interviewed Trustee Sarah Coombes about gender bias within healthcare. Click here to read the article in the Hospital Times.

In terms of support, our Buddy Service was launched in November 2020 and has so far received 22 requests for support. Our Buddies are all volunteers who have had a SCAD and help support newly diagnosed patients. In the majority of cases, just one ‘heart to heart’ chat is all patients need, but others need more ongoing support, which our Buddies are very happy to provide.

Following Rebecca’s update, she introduced a film created by Aimy Stevens. Aimy’s mum, Anita, died following a SCAD two years ago and Aimy wanted to make a film about SCAD in her memory. We played a short film explaining why Aimy wanted to make the film and how Beat SCAD and some patients helped her. Click here to read more. Click here to watch the film, This is SCAD.

FMD

Karen Rockell, Trustee, interviewed Dr Tina Chrysochou, Consultant Nephrologist and Honorary Senior Lecturer in Cardiovascular Sciences within the School of Medical Sciences, Salford Royal Hospital NHS Foundation Trust about Fibromuscular Dysplasia (FMD). Dr Crysochou explained what FMD is and discussed the FMD Registry which is due to launch soon.

SCAD research

Rebecca then introduced a recorded interview she had done with Dr Alice Wood, who has recently finished her research fellowship on the SCAD research team in Leicester. Dr Wood researched SCAD in men and recurrent SCAD. She is currently analysing the results of the tests done on patients and healthy volunteers, after which she will write up here thesis and hopefully submit papers to journals.

Dr David Adlam, Associate Professor of Acute and Interventional Cardiology at University of Leicester & Honorary Consultant Interventional Cardiologist at University Hospitals Leicester, who is leading the SCAD research in the UK then took the floor and discussed the various research papers that have been published over the last couple of years.

We then had a Q&A session where Dr Adlam answered many questions about SCAD, migraines, hormones, the menopause and more.

Thanks to everyone who attended and those who couldn’t attend but sent in questions, to Aimy Stevens for her very emotional but inspirational film and to Dr Adlam, Dr Crysochou and Dr Wood for taking the time to talk to us.

World Heart Day podcast raises awareness of SCAD

Medics 4 Rare Diseases (M4RD) has produced a podcast about SCAD to mark World Heart Day (29 September).

Lucy McKay, CEO of M4RD, was joined by Beat SCAD Trustees Sarah Coombes and Karen Rockell, and Dr David Adlam, lead UK SCAD researcher.

The podcast challenges medics to ‘dare to think rare’ and offers tips and solutions for diagnosing and managing SCAD. Dr Adlam commented: ‘As with all rare diseases, if you don’t think about it, if you don’t look for it and test for it, you won’t make the diagnosis for it. And with SCAD, missing or delaying that diagnosis can be serious.’

He added: ‘It’s critical that as healthcare professionals we listen to what patients are telling us, get them to a place of safety, carry out simple tests (ECG and troponin) and, once diagnosed, provide the care they need.’

Managing SCAD doesn’t involve expensive tests and procedures, but it DOES require medics to spend a bit of time learning about the condition. Dr Adlam said it’s also important for medics to take a history – not just of physical health but emotional stressors too: death, divorce, work stress, moving house (or a combination of these) – are extremely common themes for SCAD patients.

Challenges getting a diagnosis

The podcast highlights the challenges SCAD patients face accessing medical care, getting a diagnosis and receiving appropriate aftercare.

The panellists discussed the fact that there is no such thing as a typical SCAD heart attack or SCAD patient. Some have sudden heart attack symptoms, such as severe chest pain, others have staggered onset heart attacks over the course of several days. Some will have pain referred to jaw, teeth, shoulder-blade, back – sometimes without chest or arm pain at all.

The experience of many SCAD patients is that 111 call takers, paramedics and A&E triage staff may make assumptions or exhibit bias when assessing people with cardiac symptoms who have few/no cardiac risk factors and no family history of cardiac ill health.

Current cardiac guidelines mean that if a patient’s ECG is normal, non-cardiac reasons for cardiac symptoms are often explored, with patients being told that they are having a panic attack or indigestion, for example.

And once a troponin blood test is done, and a heart attack is diagnosed, a patient without cardiac risk factors will often be asked when they last took cocaine…

Aftercare

In terms of further tests, once diagnosed, SCAD patients need scanning to check for other associated conditions, most commonly FMD (Fibromuscular Dysplasia).

And because 90% of SCAD patients are women and we still don’t understand the connection between female sex hormones and SCAD, many female SCAD patients will need to discuss contraception, pregnancy, menopause, HRT with someone who can relate it to their SCAD diagnosis. Most cardiologists are not comfortable doing this.

Clinical dilemmas

The podcast also delves into the challenges faced by doctors such as Dr Adlam, trying to provide a national service without any real budget to do so, and the dilemma presented by the current NHS commissioning system. Dr Adlam gets calls from colleagues across the UK faced with challenging decision-making scenarios and does his best to support them. But he has no specific funding for this service.

Dr Adlam shared his hopes for a future where every UK region is supported by a cardiologist knowledgeable about SCAD from a regional centre equipped to provide acute diagnoses, and then holistic short- medium- and long-term care for SCAD patients.

He said: ‘To make a massive difference to this population of SCAD patients, which is not a trivial population, would require – in NHS terms – a tiny investment. I’m sure that applies to many other rare diseases too. Even if you were to impact on 100 rare diseases, setting up each clinic would require very little compared to just a few nights’ occupancy of an ICU bed. What we do to support SCAD patients as outpatients is low cost but has a very high impact on our patient population.’

Research breakthroughs

Dr Adlam highlighted some of the research findings, including the fact that some genetic causes of SCAD do exist. Most underlying genetic issues are in common gene variants. He explained that it’s more about the pack of cards you are dealt when you are born, than having one gene that will cause a problem.

Interestingly, he said, if you have the common gene variants, while making you more vulnerable to SCAD, you are slightly protected from traditional coronary artery disease. So, one set of genes that protect you from one thing mean that you are slightly more vulnerable to something else.

A few rare genes are also associated with SCAD, and with other known rare diseases: Polycystic Kidney Disease, Loeys-Dietz, Vascular Ehlers Danlos – affecting just 3-4% of SCAD patients.

It is hoped that studying male SCADs (a rare group within a rare condition) may provide some answers as to why SCAD occurs.

Key messages

The podcast is an informal mix of discussion, lived experience and medical expertise. Seven SCAD patients, Joannie, Erica, Terri, Charlotte, Amy, Karen and Sarah provided testimonies. A huge thank you to them all for making such powerful statements.

The podcast is a ‘must listen’ for healthcare professionals, as well as SCAD patients. In summary, key messages include:

  • Allow your patient to be heard as a whole human being with a life behind them.
  • Learning about rare conditions doesn’t only help doctors treat patients with rare conditions but adds to our greater knowledge.
  • Partnership between clinical expertise and research, patients and patient organisations are crucial.

Click here to listen to the podcast. This year’s theme for World Heart Day is ‘Use Heart to Connect’ so please do share it widely to help us raise awareness of SCAD.

You can also read M4RD’s newsletter here.

Student filmmaker creates film about SCAD in memory of her mum

Aimy Stevens’ mum Anita died following a SCAD two years ago and this year Aimy decided to go on a very personal journey to research the condition and talk to SCAD patients about their experiences.

She wanted to use her skills as a filmmaker to create a film, so contacted Beat SCAD to ask for help. We provided her with lots of information and put her in touch with lead UK researcher Dr David Adlam, who she interviewed. We also asked patients if they would help and we had a great response. Aimy interviewed three patients, Caz, Elizabeth and Erica. 

The film, This is SCAD, was launched on 21 September, the second anniversary of her mum’s death. It is emotional and inspirational, so thank you Aimy and to everyone who contributed.

Click here to watch the film.

SCAD patients help A-level student’s studies

When Ailsa Hamilton, an A-level student, decided to do an Extended Project Qualification focusing on SCAD, she reached out to Beat SCAD for help in her research. The Extended Project Qualification is equivalent to half an A level and is about developing research and analytical thinking skills in an area of the student’s choice.

Ailsa’s mum, Anna, had a SCAD in October 2019, so it’s a topic close to her heart. She created a questionnaire for SCAD patients, so she could gather real-world, first-hand information about the impact SCAD has had on patients’ lives.

Beat SCAD promoted the survey Ailsa (pictured right) created and there was a great response from patients. She received 183 responses which gave her lots of information about their lived experiences.

The essay was divided into four sections covering medication, aftercare, emotions felt by patients, investigations and operations and how misdiagnosis of SCAD can negatively affect a patient. From the survey it showed that 46.2% of patients felt worried or anxious, which could have led to other health complications, suggesting that misdiagnosis has a negative impact on patients’ emotional wellbeing.

In the investigations and operations section of the essay Ailsa asked what patients felt they missed out on due to misdiagnosis. 43.9% of people said they missed out on thorough and appropriate investigations, which Ailsa said “raised the question, are patients being misdiagnosed due to a lack of proper investigations which would uncover that the patient is suffering from SCAD?”

However, when patients were correctly diagnosed, the treatment they received was described as excellent and good. Patients described the effectiveness of treatment of SCAD as very good and good.

As expected, the conclusion to the essay question, “Can the misdiagnosis of spontaneous coronary artery dissection have a negative impact on the patient’s overall wellbeing?”, was that misdiagnosis of SCAD does have a negative impact on the patient’s overall wellbeing.

Ailsa contacted us again recently to tell us she has achieved an A* for her 5,000-word essay, which is a fantastic achievement – well done Ailsa!

Ailsa said: “Beat SCAD was so helpful and friendly with helping me conduct the survey, I really appreciated Debbie’s support and willingness to help me gain real data from SCAD patients. The overall experience of collecting information about SCAD, that has affected my family directly, and being able to research and write about it has been exciting, hard work (but worth it) and eye opening. I think that I have learnt a lot from this experience and have been very grateful for all BeatSCAD’s help.”

Anna (Ailsa’s Mum) has this advice for SCAD patients: “Be kind and gentle to yourself as you recover mentally and physically from the shock of having experienced a SCAD. I found it helpful to gradually get back to normal and to set small targets along the way. Talking openly to friends, family and work colleagues about my experience helped which also meant that they learnt about SCAD too!”

Debbie Oliver, Beat SCAD Trustee, said: “We were very pleased to help Ailsa with her research and that she got such a good response from SCAD patients, who are always willing to help raise awareness, especially of the reality of living with SCAD. We’d like to congratulate her on her brilliant grade and thank her for raising awareness of SCAD.”

SCAD patient uses art for health and wellbeing – and ‘gives back’ to the SCAD community

Two-time SCAD patient Giedre Calverley has been using art to maintain her health and wellbeing since her first SCAD in 2018. In February this year, she decided to help other SCAD patients do the same.

She told us that after her second SCAD in January she attended a webinar where Professor Neil Greenberg talked about occupational stress in the caring professions and measures that have been proved to help prevent lasting negative effects on health.

“The idea of psychological PPE – having a plan that includes personally effective things for staying well, ready for possible stresses in the future, and peer-support groups – having a group of people who share the same experience and help each other with problem-solving and encouragement – gave me the idea to start a creative group with SCAD ‘survivors’,” Geidre explains.

“I experienced the tremendous supportive power of a good peer group in my professional life over the years, and wondered if I could combine both elements that are instrumental in my own health and wellbeing, for the benefit of others – my peers with SCAD experience. I was keen to make connection with other human beings and support each other by sharing creativity together.”

So in February, she invited members of the SCAD UK & Ireland Survivors Facebook group to sign up for weekly creative and conversation sessions on Zoom.

She told the group: “The purpose is to have a peer group where we could ‘make sense’ of changes in our lives caused by SCAD in a safe, facilitated creative space. Similarly to peer groups in caring professions where people deal with difficult or even traumatic events by mutual reflection and support, this could be a confidential survivors’ group that helps with the same.”

She added: “What qualifies me? I’m a doctor who worked in the NHS for 15 years before my first SCAD event, obtained a Lifestyle Medicine Physician Diploma afterwards and started using visual art (with no previous experience or special ability) for my own healing with very positive results. I recently had my second SCAD and with that – a strong desire to connect with my SCAD peers in a positive, supportive and meaningful way.”

Beat SCAD Trustee, Sarah Coombes said, “Initiatives like this can be incredibly valuable for the recovery of SCAD patients. The chance to tell your story in a safe space. To be heard by others who know what you are going through. To be able share your experiences of life after a major health event and perhaps learn to put what happened into some kind of perspective. And, ultimately, to gain self-awareness and insight – it’s really powerful.”

Beat SCAD is very grateful to Giedre for sharing her expertise and encourage any SCAD patients who feel they could help to get in touch as there are many different ways that you can volunteer to support the work of Beat SCAD.

“Remember, it’s important to focus on healing ourselves first,” said Sarah, “but once we feel strong enough, giving something back to the community that has supported us can be a wonderful experience that further strengthens our own recovery as well as paying forward the support we received to help those who come after us.”

Looking after mental wellbeing after SCAD is just as important as healing physically.  Click here for further resources. Do consider requesting a SCAD Buddy if you would like to have someone to talk to one-to-one, someone who ‘gets’ what you are going through.

To see some of Giedre’s art, have a look on Instagram giedr_art and see Healing_scad_h_art for some of the art created by the SCAD patient group.

Giedre had a great response to her initial classes and if you’re interested in finding out more, please complete Giedre’s form here. If there is enough interest Giedre plans to hold more workshops.