SCAD and wellbeing

Thanks to everyone who attended Beat SCAD’s virtual event on 13 February looking at SCAD and wellbeing.

Dr Colette Soan, an educational psychologist at a local authority and a lecturer at the University of Birmingham, who has had two SCADs and a diagnosis of FMD (Fibromuscular Dysplasia), led the first part of the session. She started by saying it’s normal to have an emotional or psychological reaction to a SCAD event and everyone responds differently.

She explained what is meant by psychological impact, including anxiety, depression and post-traumatic stress.

Dr Colette SoanColette (pictured right) and colleagues Zoe Capper, Lydia McTigue and Bethany Williams, reviewed research literature that discussed SCAD. They found that in the past decade the number of papers published has increased dramatically, which means there is more knowledge about SCAD in the healthcare community.

The team looked at what was discussed in the papers about mental health and psychological rehab for SCAD patients.

One research paper suggested there were higher scores of anxiety and depression closer to the point of SCAD, when the SCAD survivor was younger and when they were peripartum. A more recent study found there was no difference between P-SCAD (pregnancy-related) patients and other patients in terms of the level of anxiety and depression.

According to one study, 38.5% of SCAD patients had a history of depression or anxiety and around half experienced an intense emotional experience or stress prior to their SCAD event.

SCAD patients who attend cardiac rehab tend to have higher scores for anxiety and depression than non-SCAD patients prior to attending rehab. About 75% of patients indicated they experienced an emotional benefit from attending rehab.

The research tells us that things which help recovery include recommendations from primary care providers (eg cardiologist), SCAD-specific programmes, and online patient education and support groups.

Positive changes

Colette then discussed post-traumatic stress leading to post-traumatic growth, where patients make positive changes following a trauma.

She finished with a lovely mnemonic (pictured right) to help us remember to look after ourselves.

Cardiac rehab survey

Beat SCAD Trustee Karen Rockell discussed the Beat SCAD cardiac rehab survey, which has given us some really interesting data about how SCAD patients experienced cardiac rehab. Although some patients felt isolated because other patients tend to be a lot older and have atherosclerotic heart disease, in the main they found it beneficial.

Of the 242 people who answered the survey:

  • 42% said rehab helped them feel mentally and physically more confident.
  • 33% of those who attended rehab were offered a talking therapy, but this is not available in all areas because rehab offerings are different across regions.
  • 76% said they continued their exercise after rehab, which is a great figure as it is so important for our wellbeing.
  • 67% said they would recommend rehab to a new patient.
  • However, 14% of respondents weren’t offered rehab, which is an area Beat SCAD plans to address.

Covid has had an impact on cardiac rehab and some services are offering online sessions, but this is by no means universal. We will be investigating the effect of Covid on rehab

If you have not already done so, please click here to fill in the cardiac rehab survey.

We will continue to educate cardiac rehab professionals – if you know a team who would like a remote session, please email us.

Buddy service and wellbeing resources

Trustee Sarah Coombes then discussed the wellbeing support available to SCAD patients, families and friends, including Facebook groups, resources on our website and the Buddy Service.

The service, which was launched late last year, offers one-off or ongoing support and signposting for SCAD patients. Buddies are ‘experts by experience’ who have been through a SCAD and can help support patients through the early days after their diagnosis.

Many thanks to Colette, to her colleagues Zoe, Lydia and Bethany, who analysed the research, and to Sue Morris, Honorary Senior Lecturer: Applied Educational and Child Psychology at the University of Birmingham, who provided some helpful insights. We hope those who attended the event found it useful.

You can watch a recording of the event on our Youtube channel here.

Rare disease education module launches

In a great step forward for rare disease patients, Medics4RareDiseases has launched Rare Disease 101, an online interactive education model aimed at medical professionals that will help tackle delays in diagnosis and improve patient care.

For some patients delays in diagnosis can be long and when patients don’t fit the profile healthcare professionals expect to see, it can be a frustrating and upsetting journey.

Many SCAD patients have experienced not just delays in diagnosis and treatment, but also bias because their gender and age lead healthcare professionals to dismiss cardiac symptoms as being anxiety or panic attacks without performing troponin blood tests.

The education module includes a case study on SCAD, explaining that even with classic heart attack symptoms SCAD is often missed “based solely on demographics of the patient”.

Rare Disease 101 addresses the basics of rare disease and the shared challenges that people with rare diseases face, especially when accessing healthcare. It includes information that the average medical professional may not be aware of, with many stories, examples, tools, websites, knowledge sources and images from the rare disease community.

Andrea and her sonOne of the stories in the module is from SCAD patient Andrea Alestrand (pictured). Despite having cardiac symptoms, she was advised to go to her walk-in centre, where she was diagnosed with stress and anxiety. The next day she was still having symptoms and went to A&E, where they did a troponin test and, following an angiogram, she was eventually diagnosed with SCAD.

She had to go into hospital again a few days later and, having done some research into SCAD, says: “I tried to tell the doctor what I had read about SCAD online, but he got annoyed and he dismissed what I was telling him, saying ‘since Google came along, everybody is a doctor’.”

You can watch her video here at and read her story on our website.

“Thanks to Rare Disease 101, medical educators can no longer skim over rare disease because of a perceived irrelevance. A patient group of 3.5 million people cannot be left off the medical curricula and Medics4RareDiseases providing the model with which to deliver this education,” comments Dr Lucy McKay, CEO of Medics4RareDiseases.

Rare Disease 101 is free to use by healthcare professionals and is available via www.m4rd.org.