5kMay: Beat SCAD partners with Run for Heroes for new charity challenge

During the first Covid lockdown Run for Heroes created the 5km running challenge asking participants to Run 5, Donate 5, Nominate 5.

After the success of the original fundraiser, which raised more than £7 million for NHS Charities, Run for Heroes is launching its latest challenge by turning the month of May into a celebration of physical activity with their 5kMay campaign – and Beat SCAD supporters can join in to raise money for us.

The idea is to do a 5km (walk, run, swim or roll – it’s up to you!), donate £5 to Beat SCAD and nominate 5 people to do their own 5km challenge and donate to us as well.

You can take part on your own or as a group and we’d love all our supporters to take part to help us fund more research into SCAD.

There’s more info on our JustGiving page where you can sign up between now and the end of April, ready for your 5km challenge during May.

Volunteers help paramedics recognise the potential for bias in the care they provide to SCAD patients

Trustee Sarah Coombes led another training session for paramedics on 10 March, with the help of four SCAD patient volunteers.

Senior Paramedics from the London and South East Coast Ambulance Services took part in an online CPD (continuted professional development) session where Sarah provided information about SCAD, and volunteers Rose, Zoe, Paul and Mag told their stories and talked about their experiences as SCAD patients.

Paul Millea, who had his SCAD in 2019 – the evening after he had played a game of semi-professional Rugby – said “I’m really happy to be involved, it gives me a chance to promote our community and raise awareness. Being able to discuss your story with others also really helps you to reflect on your event and better come to terms with it.”

Paul works in construction health and safety and part of his role is running accident investigations, so he has a good understanding of the role of ‘human factors’. Human factors refer to: environmental; organisational and job factors; human and individual characteristics – all of which influence behaviour at work in a way which can affect health and safety.

An increasingly important part of the work Beat SCAD does is trying to reduce the negative impact of detrimental ‘human factors’, in particular, where bias creeps into the care that SCAD survivors experience. A good example of this would be where a woman experiencing clear cardiac symptoms is assumed to be suffering with a panic attack or anxiety because the paramedic doesn’t associate a middle aged woman who has few/no cardiac risk factors with someone having a heart attack.   Similarly, a man exhibiting cardiac symptoms may be assumed to be having a traditional form of heart attack, caused by a build up of plaque, when in fact they are having a SCAD heart attack which has a totally different cause and requires different treatment.

Beat SCAD is delighted to have an ongoing relationship with paramedic educators for London and the South East Coast Ambulance Services because they cover a population of 14 million people. The way paramedics hand over their patients to A&E staff (and the hospital they take the patient to) will influence the speed at which SCAD patients receive the tests and care they need – so the more paramedics who suspect SCAD, the better.

Thanks to our volunteers for helping educate paramedics.

Click here to read a previous story about educating paramedics.

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.

Women’s Health Strategy – have your say!

The government is asking women to share their experiences of the health and care system and help them create a new Women’s Health Strategy to ensure health services are meeting women’s needs.

At Beat SCAD we have heard many stories from women who, because of their age, gender, lack of cardiac risk factors and the fact that they don’t fit what healthcare professionals expect to see in a cardiac patient, have been misdiagnosed or dismissed out of hand even when they are having cardiac symptoms.

Andrea, for example, was told she was stressed and anxious when in reality she was having a heart attack caused by SCAD. She was 44, slim, fit and healthy and had never suffered from anxiety before. The pain didn’t go away, so she eventually went to A&E for a blood test, which showed she was having a heart attack.

Alison, a 46-year-old mother of two had pain across her shoulders, tingling in her arms and was violently sick and yet, when she had a phone consultation with her GP, she was told she was hyperventilating.

Many SCAD patients are told they are too young to be having a cardiac event or that because they are pregnant or menopausal, their symptoms are caused by hormones. In some cases this has resulted in delayed treatment and heart failure.

The core themes in the call for evidence include ‘Placing women’s voices at the centre of their health and care – how the health and care system engages with and listens to women at the individual level as well as at the system level,’ and ‘increasing awareness and understanding of women’s health conditions among clinicians.’

Matt Hancock, Health and Social Care Secretary, said: “The healthcare system needs to work for everyone, and we must address inequalities which exist within it. I urge all women, and those who have experiences or expertise in women’s health, to come forward and share their views with us to inform the future of this important strategy.”

The government also recognises that gender biases in clinical trials and research are contributing to worse health outcomes for women and less evidence and data on how conditions affect women differently.

It goes on to say, “A University of Leeds study showed women with a total blockage of a coronary artery were 59% more likely to be misdiagnosed than men, and found that UK women had more than double the rate of death in the 30 days following heart attack compared with men.

The call for evidence will run for 12 weeks from 8 March. For more information click here.

We would urge women who have had a SCAD to fill in the form and give their experiences and help shape the government’s strategy.

The link for the government form is here.

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.