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.

Research update November 2020

We celebrated our fifth birthday on 7 November with a virtual event where UK SCAD experts Dr David Adlam, Dr Alice Wood and Dr Abi Al-Hussaini gave us insights into where we are now with SCAD research, pregnancy-related SCAD and answered questions from the SCAD community.

Rebecca BreslinKicking off the event, Rebecca Breslin, Chair and Co-founder of Beat SCAD (pictured right), gave a brief round-up of our first five years, including the fabulous donations we’ve been able to give to the UK research project.

These donations have been made possible by our fundraisers and, over the past five years, they have raised more than £260,000*, which is a fantastic achievement. We have been impacted by Covid-19 and many fundraising events were cancelled or postponed, resulting in less income this year.

However, we are very pleased to say that over the past five years, for every £1 spent, 84.4p has gone to research, which is much higher than our original commitment to donate at least 60% of funds. The rest of the money has been spent on charitable activities, such as conferences and events, merchandise and promotional expenses. And just 2.8p out of every £1 spent goes to running the charity.

To celebrate the achievements of the charity and its supporters, we showed a video, created by volunteer Adam Hackers. Click here to watch it.

Research update

Dr Adlam, Associate Professor of Acute and Interventional Cardiology at University of Leicester & Honorary Consultant Interventional Cardiologist at University Hospitals Leicester (pictured below), who is leading the UK SCAD research, talked about the research and future directions.Dr David Adlam

He discussed the importance of the SCAD section that has been added to the European Society of Cardiology (ESC) 2020 Acute Coronary Syndromes (ACS) Clinical Practice Guidelines, saying that it highlights the importance of recognising SCAD and that the way it’s diagnosed and managed is different to atherosclerotic heart attacks.

The research has, over the past few years, made important steps forward on the genetics front, with the identification of the first common variant genes to be associated with SCAD, as well as more uncommon genes such as those associated with Loeys-Dietz Syndrome.

DNA from nearly 400 patients across the world, including some from the UK, thanks to a £3K donation from Beat SCAD, was sequenced as part of this research.

So we now understand more about what is going on at the DNA level in SCAD patients.

Another paper looked at the size of heart injury after SCAD and found that in the majority of cases, the damage is small. This helps clinicians to understand the consequences of SCAD and how it should be managed.

In terms of next steps, Dr Adlam said there is currently no clinical trial data to guide clinicians on what the best treatments are for SCAD, so that is the next step, as well as setting up large international registries to identify patients who could be recruited to clinical trials.

In the shorter term, the priority is to understand the sub-groups within the SCAD community – men, pregnancy-related SCAD (P-SCAD) and recurrent SCADs.

Dr Adlam concluded by saying the research team is grateful to Beat SCAD for the funding that has enabled them to continue the research, and to patients and healthy volunteers who have helped advance the knowledge of the condition.

He said: “Without the funds we wouldn’t be talking today about the genetics of SCAD or understanding how to manage patients. Without Beat SCAD we wouldn’t be where we are and the UK research has made an important contribution to global research.”

Sub-group study

Dr Wood, Research Fellow, (pictured right) talked about her study of male and recurrent SCADs. She said she chose to study men because although there are suspicions that there are hormonal influences in SCAD, there are other factors and, as men don’t have female sex hormones, studying them may reveal useful information. For this study she has currently seen 32 men and nine healthy volunteers.Dr Alice Wood

For recurrent SCADs, studying a small number of people may help identify subtle differences or changes. She has seen 19 women with recurrence and 11 healthy volunteers.

The priority now is to see more patients and healthy volunteers as recruitment had to be paused due to Covid-19, and then analyse the data.

Dr Wood’s work has been part-funded by Beat SCAD.

Clinical observations for pregnancy-related SCAD

Dr Al-Hussaini, Consultant Cardiologist at Chelsea & Westminster and Royal Brompton Hospitals, London (pictured below), who was the first Research Fellow on the UK SCAD research project, talked about pregnancy SCAD.

She said the patient population tends to be younger, with no cardiovascular risk factors, and their SCADs are not always related to a first pregnancy. Presentation can be delayed or missed and they tend to have a larger heart attack than SCADs not related to pregnancy. Multi-vessel SCAD also tends to be more common in P-SCADs.

Dr Abi Al-Hussaini

She explained that the high-risk pregnancy clinic in London involves a multidisciplinary team identifying individual risk factors and management plans for patients who are thinking of getting pregnant after having a SCAD, so they can make a fully informed decision whether to become pregnant.

The team has seen about 35 patients, some of whom have gone on to have successful pregnancies, while others have decided against getting pregnant. She emphasised that pregnancy after SCAD is high risk so patients need to balance the risk factors before deciding how to proceed.

Cardiac rehab survey results

Beat SCAD ran a survey earlier in the year to ask about SCAD patients’ cardiac rehab experience. Volunteer Victoria Warnes-Elgie announced some of the results of that survey, including that, of the 242 people who responded, 69% completed cardiac rehab, and almost 50% felt physically and mentally stronger as a result.

However, a more tailored programme and greater understanding of SCAD was important to SCAD patients, as was access to talking therapies to help with the emotional aspects of having a SCAD.

We will provide more in-depth information about these results in the coming weeks. The survey is still open, and we urge SCAD patients to complete it after they have completed their cardiac rehab programme.

The next five years

Following a Q&A session, Rebecca moved on to our future plans, explaining that the Trustees have been having strategy planning meetings over the summer to identify the projects we want to focus on during the next five years. Look out for information over the coming months.

She announced that to help the SCAD community, we have updated our website with lots of information about Living with SCAD.

We are also now providing a Buddy Service, where SCAD patients can talk to and get support from one of our trained Buddies, fellow patients who can point them in the right direction for information and support.

How you can help – 5 things for 5 years!

Finally, Rebecca asked delegates to do five things to support Beat SCAD in our fifth year:

  1. Become a volunteer – email us. We’re currently on the lookout for people who have marketing, communication and social media skills.
  2. Fill in our Keep in touch form.
  3. Sign up to receive our newsletters.
  4. Follow us on social media.
  5. Make regular donations… if we have regular income we can plan more efficiently.

The last five years have been incredible for the charity and we have achieved more than we had ever hoped. But there is a lot more to do to achieve our vision of a world that understands SCAD, where those affected are quickly and accurately diagnosed and never feel alone.

Thanks to everyone who attended our event – we had more than 85 attendees – to SCAD experts Dr David Adlam, Dr Alice Wood, Dr Abi Al-Hussaini for their contributions and for answering lots of questions. And to Victoria Warnes-Elgie for taking us through the results of the Cardiac Rehab survey.

We will be editing the content and uploading it to our Youtube channel in due course, but in the meantime, do watch the video created by volunteer Adam Hackers to celebrate our achievements over the past five years.

And finally, please consider doing one or all of the ‘five things’ to help us achieve our aims.

* Pending final accounts.

Updated 7.3.21

The following videos are now on Youtube:

Dr David Adlam on SCAD research

Dr Alice Wood on her study of sub-groups

Dr Abi Al-Hussaini on SCAD and pregnancy

Q&A session with SCAD experts

Cardiac rehab survey

Looking to the future

Volunteer case study: Database project

Along with many other small charities, Beat SCAD is run by volunteers in their spare time, so we are always on the lookout for opportunities to make some of the admin tasks less time-consuming.

When we needed help automating a labour-intensive task, we posted a volunteer opportunity on Ethical Angel. Volunteer Rosie Wood (pictured), who worked for journal publisher Frontiers offered to help.

Ethical Angel is an employee volunteering service that matches volunteers from employers who want to enable staff to volunteer to help charities looking for help. Volunteers are supported by their employers and Rosie was able to do some of the work during her working day.

The project

Beat SCAD uses a database to store information provided to us by SCAD patients, families and healthcare professionals, so we can keep people up to date with our activities as well as collect data to help us campaign for better care for patients.

The process of getting the information from our Keep in touch form into this database was very labour-intensive so automating this process was a priority so we could spend that valuable time on other areas of our mission.

Two of the Trustees, Karen Rockell and Debbie Oliver, had discussions with Rosie about the charity and the data we collect. Rosie then did some work to create a new Keep in touch form that would produce data in a format that allowed fields to be automatically matched in the database.

At every stage of the project, Rosie kept us up to date with what she was doing. We tested the process throughout and Rosie was always happy to take in changes and tweaks.

The result

Thanks to Rosie, we now have an automated process, which is saving the Trustees a lot of time, and we are very grateful to Rosie and Ethical Angel for all the help they have given us.

The future

Rosie left Frontiers in the summer and is now studying a PhD looking at adsorbents for pollutants in wastewater.

She has offered to continue helping us with database projects to make things more efficient – we have gratefully accepted her offer!