Leicester SCAD clinic in the spotlight

SCAD patients highlight how important the NHS clinic is for their recovery

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, 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 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 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.

Leicester SCAD clinic in the spotlight