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.

Volunteers help educate paramedics about SCAD

Trustee Sarah Coombes led a training session for paramedics on 19 January, with the help of three SCAD patient volunteers.

Paramedics from the South East Coast Ambulance Service took part in a Zoom session where Sarah provided information about SCAD and volunteers Rose, Zoe and Paul told their stories and talked about their experience as SCAD patients.

Discussing the range of symptoms experienced by male and female patients, those who are perimenopausal, pregnant or post-partum, as well as those who had a cardiac arrest, illustrated clearly to the paramedics that there is no such thing as a ‘typical’ SCAD patient or ‘typical’ SCAD symptoms. This knowledge helps raise the ‘index of suspicion’ when paramedics (and other healthcare professionals) are presented with a patient who doesn’t fit the normal profile of a cardiac patient.

The group were very interested and appreciative of the opportunity to learn about SCAD directly from patients and committed to passing on the information to their teams.

Alan Rice, Associate Professor Paramedic Practice, Work Force Development Paramedic Lead, School of Allied Health, Midwifery and Social Care at Kingston University and St George’s, said: “Huge, huge thank you. One of the best patient-led sessions I’ve ever seen.”

Many thanks to the paramedics for their interest and to Sarah, Rose, Zoe and Paul for telling their stories.

If any group of healthcare students and professionals, such as paramedics, cardiac rehab teams, cardiologists, midwives/health visitors and GPs, are interested in a remote patient-led education session on SCAD, please email us.

3,700 Christmas card sold!

What an amazing bunch you are!! 

The final quarter of 2020 was the most successful period our online shop has ever seen. 

This year our Christmas card competition allowed us to expand the range of cards we offer to include four new fabulous designs. These beautiful and engaging designs, along with our existing ones, proved to be so popular we were only just able to keep up with demand and you certainly kept Trustee Harriet and her local post office very busy.  

We sold an incredible 3,700 cards, raising a whopping £1,250 profit for Beat SCAD. Perhaps the physical distance we’ve all had to maintain this year encouraged the sending of cards as a way of reaching out and keeping in touch. Whatever the reason, we are so thankful to all of you who purchased our cards and helped us raise funds to continue our important work of awareness, support and research.

As we kick off 2021, we’re getting ready to launch our Beat SCAD branded face coverings/masks. Please do keep an eye out on social media and all the usual places for further news. We are so excited to see them out and about, modelled by you, our wonderful supporters. We hope they’ll spark some intrigue and conversations.  

With Spring not far off our horizons we are also busy working away on some fresh, new designs for t-shirts and hoodies. We’ll keep you posted as soon as these are available.

These are just a few of the new and exciting items we hope to bring you this year and to help us continue to raise funds to enable us to carry out our mission. Thank you!

Wheelock School donates £7,500 to Beat SCAD in memory of Katie Ratcliffe

Over the past year Wheelock School in Sandbach has been fundraising in memory of Katie Ratcliffe, who died, aged 33, following a SCAD last year. Katie was a teacher at the school and the children and her colleagues wanted to do something special to remember her.

They had a fundraising target of £15,000 to be split between Beat SCAD and a fund to build a Memorial Garden in Katie’s name.

The children came up with their own fundraising ideas and, because so many of them wanted to fundraise, the school had to create a rota system giving the children a week each to fundraise.

Fundraising events included the whole school doing a sponsored ‘heart run’ around the school field last Christmas. Children wore something with hearts on, including t-shirts, jumpers, deeley boppers and more. They raised an incredible £3,704 at this event.

The school’s Junior Safety Officers made and sold Christmas crafts and, to remember Katie, who taught the Kingfisher class, they made Kingfisher badges and raised £167. They then organised a Safety ‘Bake Off’ competition where the children made cakes with a safety theme for the teachers to judge and then sold the cakes that were made and raised £206.

Three Year 5 girls made pompoms and sold them during break and lunchtime, raising £1,000.

Three Year 3 boys did a lucky dip, which went down well with the children as there was a prize for everyone who had a go. They raised £125.

Mrs French, one of the school’s Reception teachers, had a ‘big’ birthday and asked for donations rather than presents at her party. She donated £400 to the total.

A Year 6 boy organised a sponsored run in his own time and asked his family to sponsor him and raised £85. And a group of Year 6 girls made bookmarks and sold them and raised £47.

Year 6 children who were due to leave in the Summer of 2019 had spent 2018/2019 doing enterprise projects to raise money for a charity of their choice. They decided that all the funds they raised would be put towards the cause as some of them had been taught by Katie. They raised £650.

A donation pot at the school entrance raised more than £400. And donations at the Christmas productions raised £382.

And a massive £8,434 was raised at a charity auction night. The school put in a massive effort and got some amazing items to auction, including a signed copy of Michelle Obama’s autobiography, signed Manchester United footballs and a signed Liverpool shirt. School staff were joined by Katie’s family and some parents on the night.

A ‘totaliser’ was filled in each week so the children could see the progress being made towards the £15,000 target and they enjoyed watching the amount increase.

Beat SCAD are extremely grateful that Wheelock School chose to donate half of that total to the charity. It will be used to further our work raising awareness of SCAD, funding research and supporting those affected by  SCAD.

A big thank you goes to everyone who organised, took part in and donated to this fundraiser, which was a fitting tribute to Katie.