Beat SCAD Conference celebrates 10 years of UK research

The fourth Beat SCAD Conference took place in Leicester on 14 October and celebrated 10 years of UK SCAD research.

We welcomed 130 delegates, including 70 SCAD patients, their families and friends, and healthcare professionals and researchers.

Starting off the day, Rebecca Breslin, Chair and Co-founder of Beat SCAD, highlighted the charity’s successes and discussed our aims for the future. The theme of the day was The Power of Patients and Research as a Driver for Change and Rebecca recalled the first meetings between patients and researchers in Leicester in 2013 that led to the research project being set up.

She went on to acknowledge the important part volunteers play in the success of Beat SCAD in raising awarenesss, supporting those affected by SCAD and funding research. We are currently looking for volunteers in the areas of volunteer management, fundraising, social media and more, so if you’re interested in helping please email us.

She then announced that Beat SCAD has increased its previous award to fund a two-year Clinical Research Fellow position by £98.6K to be the majority funder of a three-year PhD position, which will be filled by Dr Anju John.

SCAD research

Dr David Adlam, who is leading the SCAD research in Leicester, then took the floor and talked about what we know about SCAD after 10 years of research. Discussing the question how common is SCAD?, he revealed that the SCAD clinic will see more than 400 patients this year and there are possibly four times that number across the UK, meaning that at least four SCADs probably occur in the UK every day.

He then discussed how patients present with SCAD, the pros and cons of invasive angiography versus CT scans for diagnosing SCAD and the preference for conservative management where possible. Chest pain after SCAD is well recognised and for most patients this will get better after 18 months to two years.

Dr Adlam then went on to say more capacity is needed for SCAD clinical services and that it’s critical for these services to be networked for research and educational purposes. He announced that there is a funded pilot Scottish SCAD clinic at Forth Valley Royal Hospital in Larbert, led by Dr Anne Scott and Dr Clare Murphy. This will be supported in person by Dr Adlam for at least the first 12-months. He will continue to support the team thereafter as part of a UK-wide SCAD multidisciplinary team. Furthermore, along with the existing clinic at the Chelsea & Westminster Hospital run by former Clinical Research Fellow Dr Abtehale Al-Hussaini, another clinic is launching at Hammersmith Hospital, run by Dr Rasha Al-Lamee again supported in person by Dr Adlam.

Recovery from SCAD

Professor Lis Neubeck, Head of the Centre for Cardiovascular Health at Edinburgh Napier University, gave the next presentation, discussing what we know about physical and mental recovery from SCAD. She talked about the systematic review of physical and psychosocial recovery of SCAD patients, which found that cardiac rehab exercise is not tailored to SCAD patients and there is no clear guidance on what physical activity patients should do.

Professor Neubeck talked about the need to develop a SCAD-specific cardiac rehab programme, including information on heavy bleeding during periods, contraception and pregnancy, menopause and HRT, recurrent chest pain, high blood pressure, PTSD, anxiety and depression and exercise recommendations.

Fibromuscular Dysplasia

Many SCAD patients are also diagnosed with Fibromuscular Dysplasia (FMD) and Dr Tina Chrysochou, Consultant Nephrologist at Salford Royal and UK lead for the UK FMD study, provided a review of what FMD is, how it is identified and what SCAD patients should know about it. The PHACTR1 genetic discovery from 2019 is relevant for both SCAD and FMD patients (watch Dr Adlam talk about this here).

Dr Chrysochou (pictured) explained how she set up the UK’s first multi-disciplinary FMD clinic in Salford. She also provided an update on the European/International Fibromuscular Dysplasia Registry and Initiative (FEIRI). The UK FMD Study gained full ethical approval in 2022 and will be the UK arm of FEIRI. It started recruiting patients in January 2023.

Adjusting to life after SCAD

Beat SCAD Trustee Sarah Coombes gave an insight into her experience supporting SCAD patients in the Facebook support group and one-to-one. She described the different types of patients, from those who are shell-shocked, through those who say/think they are fine, to the Mrs/Mr Busy, who don’t have time to have a heart attack!

She told delegates recovery is very individual and highlighted the support available, including the Beat SCAD Buddy Service.

Patient engagement in research

Liz Ward, Public Engagement Co-ordinator, NIHR Leicester Biomedical Research Centre (BRC), discussed how the BRCs is enabling pioneering research into medical advancements in Leicester by bringing together academics and clinicians to translate scientific discoveries into potential new treatments, diagnostics and technologies. The BRC has been supportive of the SCAD research from the start and the project has been a great example of how patient engagement with research can move it forward.

SCAD research update

Dr Adlam then discussed the research, how it began and how collaboration has become a key element, with researchers and clinicians across the world working together to investigate all aspects of SCAD.

He said in the past 10 years, there have been 41 scientific papers, editorials or reviews about SCAD; European and US consensus and position statements; one textbook chapter; many presentations and talks across the UK and internationally and said SCAD is now (finally) recognised as a distinct entity in international heart attack guidelines.

He explained the findings of the GWAS (Genome Wide Association Study), published in May and updated the delegates on other research papers.

Looking to the future, he posed some questions that could be considered for research, including how do genes alter arterial function and vulnerability in SCAD? And what roles do female sex hormones and emotional stress play in SCAD?

A message from the Mayo Clinic

Before closing the Conference, Rebecca played a video message for Dr Adlam from Dr Sharonne Hayes and Dr Marysia Tweet from the Mayo Clinic congratulating him and his team on a decade of research. Dr Hayes and Dr Tweet started to research SCAD in 2009 and when Dr Adlam was looking to set up a SCAD research programme in the UK, he contacted Dr Hayes and that collaboration has continued during the past 10 years.

“We are so pleased to have been able to host a Conference this year after Covid prevented us doing it in 2020,” said Rebecca. “We are very proud of all the charity has achieved and in awe of all our fundraisers who have enabled us to donate £396,000 to the UK SCAD research project. We look forward to Dr Anju John joining the research team and pushing the research forward over the next three years.”

Thanks to everyone who attended and made the day such a success. We hope you enjoyed meeting other SCAD patients, families, friends and healthcare professionals. Thanks also to the team at the venue, Leicester College Court, for helping the day run smoothly and to the team at Triskelle Pictures, who did such a wonderful job of recording the presentations and taking photos.

You can watch the highlights video here and look out for links to the videos of the event.

Beat SCAD increases award to fund Clinical Research Fellow Dr Anju John

Last year (April 2022), we announced an award of £106,000 to fund a new Clinical Research Fellow for two years on the UK SCAD research project led by Prof David Adlam in Leicester. Unfortunately, several challenges, including ongoing Covid-19 impact, delayed the appointment of the new team member, but in June 2023, Prof Adlam updated the Trustees with news that an exciting new candidate had been interviewed and a revised strategy was being considered for the post to be a three-year PhD position… subject to securing additional funding.

Further to discussions, financial evaluation and careful consideration of the value of the Clinical Research Fellow to both the SCAD project and the SCAD patient community, we are excited to announce that Beat SCAD has increased the earlier £106,000 award by £98,624.18.

To meet the financial needs of the appointment, the award has required a re-allocation of earlier funds: in September 2020, Beat SCAD awarded £23,000 to fund imaging scans as part of Dr Alice Wood’s PhD research. Only half of this award was used during Dr Wood’s tenure. Therefore, the remaining £11,500 will now be used to fund the new Clinical Research Fellow. The aim is for Beat SCAD to replace the funds later, subject to ongoing fundraising, because imaging scans continue to be an important source of research data.

We are excited to announce that the new Clinical Research Fellow is Dr Anju John (pictured).

Prof Adlam said: “I think Dr Anju John is going to be brilliant, and the three-year time frame provides great stability for the SCAD programme. I only hope I can keep up with her!”

Dr John is currently an interventional cardiology trainee in Manchester and will join Prof Adlam’s team in Leicester from 1st February 2024.

Dr John said: “I have always been interested in the management of coronary artery disease. Being an avid learner and constantly looking for self-improvement, I have been hardworking and continuously evolving professionally. As a cardiology trainee, I have had first-hand experience in managing patients with SCAD and have developed a curiosity in improving the coronary outcomes in those presenting with this under-diagnosed condition. I will be pursuing a PhD at Leicester on SCAD, with the aim to add new knowledge in improving the care and outcome of those presenting with SCAD.”

Rebecca Breslin, Trustee Chair said: “We are extremely happy to have Dr John join the research team for the next three years. We have already seen the important impact and value of the Clinical Research Fellow role following the earlier appointments of Dr Abi Al-Hussaini [2014-2017; BHF funded] and Dr Alice Wood [2017-2021; partially Beat SCAD funded] whose work has contributed to several journal publications, in addition to the support provided directly to patients attending the SCAD clinic as well as their participation in Beat SCAD conferences to present their work.”

Beat SCAD is currently running a campaign to raise £25,000 to support the work of the Clinical Research Fellow. More details about the More research to beat SCAD campaign here Thank you to all donors and supporters so far.

Harriet Mulvaney steps down as trustee

After five years as a Trustee of Beat SCAD, Harriet has sadly stepped down.

Harriet, a mum of three, had a SCAD in November 2014 and, like many patients, searched for information about the condition. She was 44 and felt isolated and traumatised and had a long list of questions that no-one seemed to be able to answer.

As a busy HR Director she volunteered to do a talk at the 2016 Beat SCAD Conference about returning to work after a SCAD. Her unique perspective as both a patient and HR professional was invaluable to delegates.

Harriet Mulvaney gave some advice on how to approach returning to work following a SCAD eventIn 2018 she joined the Trustee Board. Her work centred around raising awareness of SCAD and supporting patients, mainly in Wales, where she lives, but also as a Buddy supporting new patients.

She has made great connections with cardiac rehab teams and paramedics and has attended meetings and given talks to these healthcare professionals, raising awareness and educating people about SCAD.

Harriet also managed the Beat SCAD Shop fulfilling orders and sourcing some great new products, including our lapel badges and the lovely branded hoodies and t-shirts.

Rebecca Breslin, Chair of Beat SCAD, said: “Harriet has made many important contributions and my fellow Trustees, Debbie and Sarah, want to thank her for everything she’s done to move the charity’s mission forward. We will miss her but are pleased that she will stay on as a volunteer and continue to spread the word about SCAD in Wales.”

Harriet said: “I have relished the opportunity to be a Trustee with Beat SCAD. Working with Becks, Debbie and Sarah (and Karen Rockell in my earlier days) has been an honour and a pleasure. The work they do is phenomenal. It has been truly rewarding to help support fellow SCAD patients; to raise awareness, make connections as well as have some fun raising donations these past five years. I’m at a point in my life where my time, thoughts and energies are stretched between extended generations of family and I have had to concede that right now this doesn’t afford me the time I’d like to focus on Beat SCAD. As many of you will know, I had a second SCAD last summer and, while this hasn’t impacted me hugely, it has given me pause for thought. As much as it saddens me, I need to take a break for the foreseeable future and focus on my family and my own health and wellbeing.

“I’d urge anyone to get involved with Beat SCAD. Lots of us doing small things can have a much larger impact than a small number attempting large things. If you have opportunity please do volunteer for this incredible charity, or even consider being a Trustee. It’s been one of the most important things I’ve done in the last five years. I very much look forward to continuing to be part of it and to meeting more SCAD patients in the future.

Genetic risk factors identified for SCAD

New research has revealed underlying genetic risks for SCAD. In the first international Genome Wide Association (GWAS) meta-analysis for SCAD, 16 genes were identified that increase the risk of having a SCAD.

The study involved 1,917 cases of SCAD and 9,292 controls from European ancestry. The 16 identified genes are involved in processes that determine how the cells and connective tissue hold together and how the blood clots when bleeding occurs in tissues.

Interestingly, the researchers found that, while many genes linked to a higher risk of SCAD are shared with risk genes for conventional coronary artery disease (CAD), they have an opposite effect. This means patients with a SCAD have some genetic protection from the risk of CAD, and is further evidence that these diseases are very different. The only shared risk factor appeared to be genetically elevated blood pressure.

These results enhance the understanding of how SCAD links with other common and rare artery diseases and could lead to preventative strategies and targeted treatments in the future.

Dr David Adlam, Associate Professor of Acute and Interventional Cardiology at the University of Leicester, interventional cardiologist at the University Hospitals of Leicester NHS Trust, and lead author of the study, said: “This research confirms that there are multiple genes involved in determining the risk of a person having a SCAD. These genes give us the first key insight into the underlying causes of this disease and provide new lines of enquiry, which we hope will guide future new treatment approaches.”

Rebecca Breslin, Chair Trustee of Beat SCAD, said, “The Beat SCAD team is excited to see this new GWAS publication revealing further genetic findings relevant to SCAD and opening doors for the next stages of research. The global collaborative efforts continue to bring reassurance to the SCAD community that research progress is happening and we are learning more about SCAD all the time.”

The paper ‘Genome-wide association meta-analysis of spontaneous coronary artery dissection identifies risk variants and genes related to artery integrity and tissue-mediated coagulation‘ was published in Nature Genetics on 29 May. The research was led by the National Institute for Health and Care Research (NIHR) Leicester Biomedical Research Centre (BRC) and Universite Paris Cite, and supported by worldwide partners in Canada, the USA and Australia

Dr Adlam added: “We are grateful to Beat SCAD, the NIHR and the British Heart Foundation for funding our work, to our international partners for their collaboration and for all the patients with SCAD and healthy volunteers who gave their time to advance this research.”

Rebecca commented, “Many SCAD patients worry about their family members, especially children, being at risk too so I really hope this publication, and Dr Adlam’s accompanying video (see below), brings reassurance to help ease that worry.

“Beat SCAD funding is proving vital to keep our UK research moving, so thank you to all our supporters and fundraisers who enable our small charity to contribute to huge changes in the SCAD world.”

Beat SCAD talked to Dr Adlam about the findings of the research – click here to watch the video.

Read our summery of the paper’s findings here.

Educational videos about Pregnancy-related SCAD (P-SCAD) launched

Around 10% of SCAD patients are pregnant or post-partum and it’s estimated that 50% of heart attacks in patients who have recently given birth are due to SCAD.

Patients have told us that when they have cardiac symptoms they are often dismissed as pregnancy- or hormone-related, which leads to delayed diagnosis and sometimes devastating outcomes.

Beat SCAD has produced a series of videos discussing pregnancy-related SCAD (P-SCAD). They are aimed mainly at healthcare professionals, but patients will also find them useful.

In the Introduction to P-SCAD video Trustee Sarah Coombes explains what P-SCAD is and the symptoms to watch out for. She explains that patients are often told they are ‘too young’ or ‘too full of hormones’ to be having a heart attack and are checked for pulmonary embolism or pre-eclampsia, but rarely for cardiac conditions, even when they are displaying clear cardiac symptoms.

We talked to Dr David Adlam (UK SCAD Research Lead, Associate Professor of Acute and Interventional Cardiology at University of Leicester & Honorary Consultant Interventionalist Cardiologist at University Hospitals Leicester) about P-SCAD, when it can happen, how common it is, and the findings of a recent research paper on P-SCAD. He also discusses the risks of recurrence in post-SCAD pregnancies.

And three P-SCAD patients tell their very different stories and offer some advice to healthcare professionals presented with a pregnant or post-partum patient who is having cardiac symptoms.

Bronnach had to retire from the teaching job she loved aged 34 after having a SCAD following the birth of her third son. She is now living with heart failure. When she was feeling unwell during her pregnancy, she spoke to her midwife and says “I was made to feel like I was a nuisance.” She adds: “I do often wonder if someone had listened to me, listened to the fact that I just didn’t feel right, could my life have not been impacted as badly as it is now?”

Zoe had a SCAD and cardiac arrest while having dinner with friends. She’d given birth to her daughter a few weeks before and there was no warning that there might be a problem with her heart. “SCAD can happen to anyone and can present in many different ways,” Zoe tells us. She adds: “Don’t always assume that symptoms like pain in the arm or chest are automatically going to be down to breastfeeding or that tiredness is automatically down to having a baby… it could be something else.”

After having her baby, Geri felt unwell but, despite her husband, who is a firefighter, saying he thought she was having a heart attack, she didn’t believe that could be happening. “I never knew anybody like me who had a heart attack. That’s why I didn’t believe or trust in anything,” says Geri. She was referred to a SCAD specialist and says, “If it wasn’t for that, I wouldn’t have made the recovery that I have.”

SCAD patients tend not to fit the ‘profile’ of people who are at risk of heart attacks, so are more likely to be misdiagnosed when presenting with clear cardiac symptoms. Assumptions can be made that symptoms displayed by pregnant or post-partum patients are related to the pregnancy and P-SCAD patients often have worse outcomes than other SCAD patients. Time is muscle and a simple Troponin test can diagnose or rule out a cardiac condition.

Sarah Coombes says: “We hope these videos will raise healthcare professionals’ index of suspicion when presented with a pregnant or post-partum woman who ‘just doesn’t feel right’. Think SCAD and you may save a heart… or even a life!”

Click here for a quick overview of P-SCAD and these patient stories and have a look at the resources below for more information about P-SCAD.

Watch the Introduction to P-SCAD video here.

Dr Adlam, Bronnach, Zoe and Geri offer some advice for healthcare professionals who are presented with a pregnant or post-partum lady displaying cardiac symptoms.

Click below to watch the patient stories:

Geri’s story

Bronnach’s story

Zoe’s story

Many thanks for their help in making this video to… Dr David Adlam, SCAD patients Bronnach, Zoe and Geri, as well as Sophie and her team at Triskelle Pictures.

The costs of making these films were covered by a grant we received to help us raise awareness of P-SCAD.

P-SCAD resources

Pregnancy and Spontaneous Coronary Artery Dissection: Lessons From Survivors and Nonsurvivors, Circulation, 4 June 2022  

Beat SCAD Summary of the above paper. (Many thanks to volunteer Ria Griffiths for her help with this.)

European Society of Cardiology, acute cardiovascular care association, SCAD study group: a position paper on spontaneous coronary artery dissection

MBRRACE-UK Saving Lives Improving Mothers’ Care – Lessons learned to inform maternity care from the UK and Ireland Confidential Enquiries into Maternal Deaths and Morbidity 2018-20

Redefining SCAD (Dr David Adlam explains all things SCAD)

Research publications on SCAD

SCAD clinic referrals

SCAD in the Myles Textbook for Midwives

NHS Mum & Baby app

Beat SCAD leaflets

Frequently asked questions

SCAD and post-SCAD pregnancy clinics established in London

Pregnancy-related SCAD patient stories

P-SCAD stories

Rose’s story

Victoria’s story

Leicester SCAD clinic in the spotlight

The SCAD clinic at Glenfield Hospital in Leicester is a lifeline for many SCAD patients and an important part of their recovery. On 8 December, Beat SCAD Trustees Rebecca Breslin, Sarah Coombes, Harriet Mulvaney and patients Nazia Quyoom and Kim Balmer attended a ‘SCAD Management Showcase’ meeting at Glenfield to help highlight the importance of the service and thank the entire team who keep the clinic running so smoothly, often in difficult circumstances.

In summary, the meeting covered:

  • Dr Adlam outlined the work of the clinic and his future hopes for it.
  • Beat SCAD chair Rebecca Breslin described her own SCAD in 2012 and how that led to the creation of a SCAD patient group and then the charity in 2015.
  • Patients Nazia and Kim, along with Beat SCAD Trustees Harriet and Sarah shared their experiences
  • Sarah explained the diagnostic ‘odyssey’ that many patients go through in order to find out they have had a SCAD, the role the charity plays in supporting SCAD patients via online Facebook groups and face-to-face events. She also described the work of the Beat SCAD Buddy Service that has helped more than 50 SCAD patients in its first two years of operation.

The Glenfield SCAD clinic provides hope for SCAD patients. They are seen, heard and believed – sometimes for the first time. They experience empathy and understanding, expertise and practical ideas for managing their health going forward. The positive impact that this can have on a patient’s entire health outlook can be immense.

Attending the meeting were around 25 hospital staff including the Chief Executive of Leicestershire Hospitals, cardiologists, radiologists, vascular specialists, NHS management colleagues, rehab staff, nurses and, most importantly, the clinic and administrative staff who provide so much support for the SCAD clinic behind the scenes.

Dr David Adlam (pictured), UK SCAD Research Lead, Associate Professor of Acute and Interventional Cardiology & Honorary Consultant Interventional Cardiology, University of Leicester, gave a short presentation about SCAD, the clinical service and what makes it different and special. He said as SCAD is a condition that predominantly affects young to middle-aged females there is a need for holistic care, including advice and information about contraception, pregnancy, menopause and HRT. Sometimes psychological support is needed for patients who are generally very fit and healthy with few/no cardiac risk factors or obvious explanations as to why SCAD happened to them. They may also need support on how to manage fears of recurrence. He then spoke a little about current research and future goals.

Beat SCAD Trustee Chair Rebecca Breslin introduced the group to the charity and what we do. She also outlined her SCAD story, saying she was treated at Glenfield in 2012, but most of her questions about her heart attack were dismissed by the consultant she saw for her three-month follow-up. However, she did some research and discovered Dr Adlam had published a paper on SCAD, so she requested a referral to see him.

She went on to say this is still the typical experience of SCAD patients, that locally they often don’t get the service that the Leicester clinic offers. She finished by thanking every single member of the SCAD clinic team who make such a difference to the lives of so many SCAD patients.

SCAD patients then took the floor to relate their experiences.

‘It won’t happen again’

Nazia was 28 when she had her first SCAD in 2006 and doctors at the hospital treating her said it was a fluke, bad luck and unlikely to happen again. She spent the next 13 years feeling very isolated, having not come across anyone else who’d had a SCAD. Then, in her 40s she had a second SCAD. This time she was given a leaflet about SCAD and told about the clinic in Leicester.

After getting a referral from her GP, she travelled to Glenfield to see Dr Adlam, who was finally able to provide her with some answers, an explanation of what had happened and review her medications. She says his input was invaluable, and when she had a third SCAD in 2021, she took her iPad to her local hospital to show her two consultants the SCAD research, and scans were organised on the basis of the research and SCAD management guidelines. The consultants also emailed the SCAD clinic for further guidance regarding her treatment.

Kim (pictured with Nazia) was 47 at the time of her SCAD in 2020. She worked full time, was healthy and until then had a fairly uneventful medical history.

On 28 October she felt a pressure in the centre of her chest that took her breath away. She was sick and had muscle ache in the left side of her neck and left forearm. It wasn’t stopping her from doing things, but her husband told her she was having a heart attack and they called 111. They didn’t think it was a heart attack but told her to go to A&E for a blood test. However, she didn’t go – she was embarrassed and didn’t want to waste NHS time.

She had the chest pain for a couple of days, then it went away but returned on 3 November. She rang the GP, who asked her to go for blood tests to rule out a heart attack. She went to Milton Keynes hospital and her blood tests showed a very high troponin level and she was taken by ambulance to the John Radcliffe Hospital to have an angiogram, which showed she’d had a SCAD. The team at the John Radcliffe knew about SCAD and about the patient support group on Facebook, so she was able to get in touch with other SCAD patients immediately.

Kim said she felt self-management and focus was the key to her recovery, so she asked the GP for a referral to the SCAD clinic and, having read the information on the Beat SCAD website, the GP referred her. She attended the clinic in December 2020.

A turning point

She said this appointment was a turning point. Until then, nobody had been able to explain clearly what had happened. Her local hospital talked to her about common heart attack symptoms, didn’t think she’d had a SCAD and were dismissive of her referral.

When Kim saw Dr Adlam, she said the time taken to explain her own circumstances and not generalise was brilliant, and to come away with a directed care plan and a contact point was so reassuring. This in-depth knowledge enabled her to be confident in coming off her medication by Spring 2022.

Kim told Beat SCAD “I felt treated like a person and not just a bunch of notes in a folder. If I had remained just at my local hospital, I think I would still be on seven tablets, be scared to exercise and be clueless of what had happened and what the future held. The clinical team at Leicester were welcoming, friendly and efficient and this has empowered me not to be afraid of what has happened but to return to a lifestyle pretty close to pre-SCAD.”

Another patient, Michelle Last, was unable to attend, but keen for her experience to be heard, so Sarah told her story.

Michelle is peri-menopausal and had her SCAD at the end of 2021 while exercising. It was not diagnosed at the time she went to hospital and she was not referred for cardiac rehab. She felt very alone and isolated and did her own digging and asked for the SCAD clinic at Glenfield to look at her MRI scans. Three months after her heart attack, her SCAD was confirmed.

Michelle had a phone appointment with Dr Adlam and she said his advice helped immensely. She then pushed to have rehab, but before that she felt cast adrift and alone. Michelle told Beat SCAD “Without the Facebook group and the clinic I am not sure how I would have coped.”

She added: “If I have questions relating to my condition, I don’t feel like my doctor has the knowledge to be able to advise me and I am no longer seen by the heart team in Oxford, so without Dr Adlam and the clinic, I am not sure where I’d be.”

‘You’re an anomaly’

Beat SCAD Trustee Harriet had her first SCAD aged 44 in 2014. She was fit, had a busy job as an HR Director and three young children. She initially felt some twinges and dismissed them as indigestion or possibly a cold brewing. Then a couple of days later, she had crushing central chest pain, pain in her jaw and down both arms. Her husband called 999 and, after multiple ECGs, was taken to the University Hospital of Wales in Cardiff. She said the team were brilliant and after an angiogram, she was told she’d had a tear in a coronary artery. They didn’t call it SCAD. She was referred to cardiac rehab and told she’d have a follow-up in three months. However, she felt isolated, of no real interest to the cardiology world; an anomaly.

Then she took to Google and found out about SCAD, the Mayo Clinic in the USA, the Leicester clinic, the UK research and a Facebook patient group. The research in Leicester had recently started and she was one of the patients who attended for tests. She met the clinical and research team including Dr Adlam and Research Fellow Dr Abtehale Al-Hussaini and says their knowledge and support was incredible – she was no longer alone or an anomaly.

She asked her GP for a referral to the clinic, however her Welsh Health Board refused. She appealed and was refused again. She was told she’d had all the necessary tests while attending for the research, so could be treated by the local health authority, despite the fact that she’d never seen anyone from the cardiology team. She eventually saw a consultant, who told her he saw at least one SCAD a month and, in the past 20 years, had never seen a patient with a recurrence.

However, in June 2022 she had central crushing chest pain. She refused to believe it could be SCAD again, however her husband called 999. They were told there would be a three-to-five-hour wait for an ambulance, so Harriet’s daughter took her to A&E where she had bloods and ECGs done. There was then a five-hour wait to be seen by a doctor. The second test showed her troponins were elevated so she was finally taken into majors. 

She had an angio which showed she had had a second SCAD. Again, the team treating her were brilliant and the cardiac team were aware of SCAD and the clinic at Leicester.

Harriet contacted the team at Glenfield and she said they were amazing, emailing her while still in hospital, chasing down the angio and reviewing it. She had a phone appointment where Dr Adlam reviewed and changed her medication.

The confidence to self-advocate

Harriet said that due to the knowledge gained via the clinical and research team at Glenfield, she has felt able to advocate for herself. “It took (most of) the fear out of a recurrent SCAD,” she said. She was never dismissed, always of interest and reassured. It made her feel like she mattered. “Like many of us, I would be lost and alone without this team. My dream; to have a SCAD clinic like this in Wales,” she said.

‘When did you last take cocaine?’

Trustee Sarah Coombes (pictured) described what happened when she had her SCAD eight years ago. She was told it was a panic attack but was eventually taken to A&E where a troponin test was done to ‘rule out anything sinister’. However, when the tests came back, she was told she’d had a heart attack and was asked “When was the last time you took cocaine?” “Never,” was her reply.

After an angiogram she was told she’d had a SCAD and later, when attending Glenfield for research tests, was told she also has Fibromuscular Dysplasia (FMD) with renal artery aneurysms, iliac arteries showing as a ‘string of beads’ and an enlarged ascending aorta.

She said after her SCAD happened, it was 15 months before she had an appointment with a healthcare professional who knew more about managing SCAD than she did from looking things up on Google. She suffered with mental ill health for the first time in her life, experiencing quite severe panic attacks and anxiety because of her fears around recurrence and the lack of knowledgeable SCAD support in her area.

‘I was seen, heard and believed’

“To be seen at Leicester was to be seen, was to be heard, was to be believed, was to experience empathy and understanding, expertise and practical ideas for managing my health going forward. The positive impact that this had on my entire health outlook cannot be over-stated,” said Sarah.

Sarah is one of the admins of the Facebook UK & Ireland patient support group and her experience of not being believed is common. She explained that many SCAD patients still struggle to be taken seriously, are not believed when they go into hospital because their ECGs are normal. They are accused of being drug abusers when a heart attack is finally recognised and are told that SCAD is a ‘one off’ and ‘won’t happen again’ and they will ‘never meet another person like them’. Some are told they don’t need rehab because they haven’t had a ‘real’ heart attack, yet are told they have to take medication for atherosclerosis – an entirely different physiological process – for the rest of their lives. They may also be refused the recommended head-to-hip scan to check for other arterial abnormalities.

She went on to say that SCAD patients also need holistic care, especially around contraception, possible future pregnancy, peri-menopause and HRT, topics most cardiologists know little about. Patients are referred to obs/gynae colleagues, who then refer back to cardiology because they can’t advise on the impact of artificial hormones on patients’ hearts. So they get passed from pillar to post without receiving the guidance they need. The Glenfield clinic, however, treats patients “as human beings in our entirety”.

Sarah explained that Beat SCAD provides online and face-to-face support to patients and families. “There are regular online and real-world events for patients and healthcare professionals and we spend hours every day supporting newly diagnosed and longer term SCAD patients. There are more than 1300 members in the Facebook UK & Ireland patient group, ranging from those diagnosed in the past few days to those who had their SCADs 25 years ago. Around 20 people join each month, but we suspect that the actual number of people having SCADs each month is significantly higher.”

Beat SCAD has also created a Buddy Service to support newly diagnosed patients and, in the first two years, we have supported more than 50 patients on a one-to-one basis.

The importance of the SCAD clinic

Time and time again, Beat SCAD have been told by patients how important the SCAD clinic is. Sarah gathered some testimonials from patients, who talked about the relief they felt when they were able to talk to someone who knows about SCAD.

“For the first time I felt someone understood what I was going through. It was wonderful to be able to trust what I was being told,” said one patient.

What most patients want is to understand what has happened and its effect on their hearts and body. As one patient said: “Closure and understanding is an important part of healing and acceptance, so the clinic gave me this. It helped me understand what had actually happened to me and what damage was done. Something I didn’t get to know in hospital.”

Another patient told us: “I tried to get answers from doctors/cardiologists, with one cardiologist saying she didn’t believe it was a SCAD, even though the angiogram showed it was. I was told I didn’t need rehab and subsequent visits to A&E were always met with doctors unsure what to do or say and I felt like I had to fight to be listened to and realise the pains I had after my SCAD were valid… For me [the Glenfield clinic] is like having someone in your corner that you know you will get the truth from and be able to answer your questions. I don’t think I’d be in the same position I am now – back to work full time and exercising three times a week – without Dr Adlam’s reassurance.

All those who attended the showcase were left with a very clear understanding of what it feels like to be a heart patient with an uncommon condition that many cardiologists are unfamiliar with. And the difference it makes to both physical and mental well-being when you can be seen by a clinic that specialises in your condition. All the SCAD patients who spoke believed that they would not be as well as they are today without the support of the SCAD clinic and said how very grateful they are that the clinic exists.

Thanks to the team at Glenfield who organised the event and to those who attended. We hope it has given them more of an insight into SCAD and how important the clinic is to patients and how much Beat SCAD and patients appreciate the hard work it takes to make it such a lifeline for patients.

The Beat SCAD team are grateful to the patients who told their stories at the meeting and for those who provided testimonials.