Beat SCAD raises awareness with midwife educators

Beat SCAD raises awareness with midwife educators

Beat SCAD recently had the opportunity to raise awareness of SCAD in pregnancy (P-SCAD) with medical staff who teach midwives.

Dr Abtehale Al-Hussaini (Dr Abi), Consultant Cardiologist at the Chelsea & Westminster Hospital and Beat SCAD volunteers Sarah Coombes and Victoria Warnes-Elgie presented to a group of 40 Lead Midwives for Education (LMEs) at King’s College in London.

Dr Abi discussed some of the latest research findings about SCAD and its possible causes as well as symptoms of P-SCAD. She provided information for the educators to give to their students about best practice in diagnosing and managing the condition.

Dr Abi, worked on the SCAD research project in Leicester and has recently set up a SCAD pregnancy and post-SCAD pregnancy clinic at Chelsea and Westminster Hospital in London to help and advise P-SCAD patients. Although pregnancy after having a SCAD is considered high risk, the P-SCAD clinic has managed seven post-SCAD pregnancies and deliveries so far – each resulting in a safe delivery for mother and baby.

Sarah told her SCAD story and talked about how SCAD patients don’t conform to the stereotypical view of heart attack patients. She urged the audience to consider SCAD if their pregnant ladies display cardiac symptoms and to ensure the necessary diagnostic blood tests are carried out as soon as possible. Many SCAD survivors have not been diagnosed quickly, often being told they are ‘anxious’, and as a result have suffered major heart damage (see our P-SCAD case studies). Sarah also explained the work Beat SCAD does to increase awareness of the condition, support survivors and raise money to fund research.

SCAD survivor Victoria had a SCAD in April 2017 and told her story to the midwife educators.

“It was fantastic to have the opportunity to engage with the country’s lead midwife educators. I was able to describe the very subtle symptoms that I experienced, and discuss other survivor stories, which will hopefully now empower midwives to interrogate any kind of chest pain further, speeding up the diagnosis of SCAD, preventing long-term heart damage and potentially even saving lives,” said Victoria.

The presentation was very well received and the audience really appreciated hearing directly from SCAD patients and to know there is now a P-SCAD clinic they can refer patients to. The LMEs will now be able to disseminate information about P-SCAD to their students, raising awareness of SCAD across the country.

Many thanks to the LMEs for inviting us to talk at their event.

30 cyclists take on tough Pyrenees route to raise money for Beat SCAD

30 cyclists take on tough Pyrenees route to raise money for Beat SCAD

30 intrepid cyclists are embarking on an incredibly hard 300-mile ride from Barcelona to Béziers across the Pyrenees on 4-6 May to raise money for Beat SCAD.

The 2018 One Community Charity Cycle ride includes representatives from across the M25 community, including Highways England, Connect Plus, Connect Plus Services.

The cyclists are training hard for this mountainous route where they will be climbing more than 20,000 feet in the first two days, including riding through the Col de Pailhères, a 20km pass averaging a 7% gradient.

Rebecca Breslin, Trustee Chair of Beat SCAD, said: “Good luck to all the cyclists taking on this enormous challenge and many thanks for supporting Beat SCAD.”

Beat SCAD and SCAD patients are very pleased and excited that the charity was chosen and we look forward to hearing about the progress of the cyclists along the route!

To donate please click here. 

SCAD Position Paper published by European Society of Cardiology

SCAD Position Paper published by European Society of Cardiology

A major milestone for the SCAD community was reached on 22 February with the publication of the first Position Paper on SCAD by the European Society of Cardiology, acute cardiovascular care association (ESC-ACCA), SCAD study group.

The Position Paper is aimed at practising clinicians caring for patients with SCAD and contains the current knowledge consensus regarding the definition of SCAD; risk factors and associations, such as hormones, Fibromuscular Dysplasia (FMD), exercise and connective tissue disorders; symptoms experienced at the time of SCAD and, for some, after; diagnostic techniques; treatment options; prognosis and aftercare recommendations. Key messages include:

  • SCAD is a frequent cause of acute coronary syndrome (ACS) in young to middle-aged women and patients with heart attack in pregnancy or post-partum.
  • Pregnancy-associated SCAD accounts for a minority of cases.
  • The causes of SCAD are unknown but there are indicators that female sex hormones have a role, as do conditions such as Fibromuscular Dysplasia (FMD).
  • There is no strong indicator that SCAD is an inherited condition.
  • Delayed diagnosis is common because SCAD patients usually fall into the lowest risk groups for ACS based on traditional risk scores.

In terms of managing SCAD, the Paper says:

  • There is increased risk of complications and adverse outcomes, compared to atherosclerotic heart disease, of repeated angiograms and stent placement (revascularisation).
  • Conservatively managed SCADs usually heal completely over a few months.
  • Further research is needed to establish the best medical treatment strategy, which may be different to the treatment for atherosclerotic heart disease.
  • The prognosis following SCAD appears good but recurrent SCAD is well recognised.
  • Recurrent chest pain after SCAD is common.

The Paper references studies indicating that male SCAD patients may be slightly younger and have a higher incidence of mechanical triggers in terms of preceding isometric or extreme exercise.

For patients wanting to become pregnant after having a SCAD, the Paper recommends it be managed by a multidisciplinary team, and says there is limited data on the risk of pregnancy in SCAD patients, but it should be considered high risk.

The Paper recommends SCAD patients should do cardiac rehabilitation and return to exercise, but avoid extreme or isometric exercise.

The writers also say that patients with SCAD may be particularly at risk of post-traumatic stress disorder (PTSD). They suggest that counselling, cognitive behavioural therapy, stress-reducing therapies or medical treatment for anxiety or depression may be appropriate in some cases.

Rebecca Breslin, Chair Trustee of Beat SCAD, said: “The release of this eagerly awaited Position Paper is a hugely significant step in the understanding of SCAD. This isn’t formal guidelines that make their way into the NHS and general practice, but it is certainly progress towards that goal and we now have consolidated scientific statements from numerous esteemed medics about SCAD at this moment in time.”

Rebecca continued: “The paper may be aimed at medics but there is much content of great value to patients too, including rationale for and against certain medications, plus some reassurances that ongoing chest pain after SCAD does happen and it is common among the patient group, as well as the genuine concern about suffering another event: recurrence does happen for some. This should be a wake-up call to the many doctors who have told their patients that their SCAD was a ‘one-off, freak event that won’t happen again’. The odds of not having a recurrence are certainly greater and keeping a positive outlook goes a long way but this truly emphasises the urgent need for more research to ensure optimum treatment and follow-up care strategies are defined.”

Dr Adlam, who is leading the UK SCAD research project in Leicester, chairs the ESC-ACCA SCAD study group, whose members include cardiologists from across Europe. The Position Paper writing committee included Dr Abtehale Al-Hussaini, who worked on the Leicester research project with Dr Adlam and is now leading a SCAD clinic in London.

The American Heart Association published their equivalent paper, a Scientific Statement, at the same time and Dr Adlam was a member of the writing committee that was chaired by Dr Sharonne Hayes of the Mayo Clinic and co-chaired by Dr Esther Kim of Vanderbilt Heart and Vascular Institute and Dr Jacqueline Saw of Vancouver General Hospital.

Dr David Adlam said: “The Position Paper is an important document for doctors and for the recognition of SCAD because currently neither the European nor American guidelines for heart attacks mention SCAD but, as we are learning, the considerations for managing SCAD differ from atherosclerotic heart attacks. It is also important for this paper to reach other medical disciplines such as Obstetricians because, ultimately, we need SCAD to be mentioned within their guidelines. The paper gives us a starting point and as more data comes out we will then update the paper over the course of time.”

Beat SCAD strongly encourages all SCAD patients to take a copy of this document to the doctors involved in their care to ensure the most up-to-date information is considered in the management of their condition. Ask your doctors to share with their colleagues and help to raise awareness.

For more information about the Leicester research, click here.

Beat SCAD Conference 2018 – book your place now!

Beat SCAD Conference 2018 – book your place now!

Registration is now open for the Beat SCAD Conference on Saturday 9 June at the Queen Elizabeth Hospital, Birmingham.

SCAD researchers and experts Dr David Adlam, Dr Abi Al-Hussaini and Dr Alice Wood will all be giving presentations and updating us on the research, and it’s also a fantastic opportunity to meet other SCAD patients and their families, so it’s set to be a great day.

Click here for details, including delegate fee, venue, hotels and directions.

You will need to complete the registration form and you will then be directed to our online shop to pay the delegate fee(s).

We look forward to seeing you in June!

Beat SCAD spreads the word among midwives

On a cold Monday morning at the end of 2017, Beat SCAD Trustee Karen Rockell and Sarah Coombes attended a day-long meeting of consultant midwives held at the Royal College of Obstetricians and Gynaecologists in London.

Karen and Sarah had been asked to do a presentation about SCAD during the day, to raise awareness and discuss midwives’ questions about the condition.

There are currently 89 consultant midwives and of the 21 present at the meeting, three had heard of SCAD, one having had a SCAD patient in her hospital 26 weeks into her pregnancy.

They listened closely to the presentation and had lots of questions. There was a discussion about the value of telling pregnant women about SCAD. Karen advised that Beat SCAD had steered away from doing this as SCAD is uncommon and pregnant women have enough to cope with during pregnancy.

The midwives advocated a general notice for midwives about not ignoring chest pain, jaw or shoulder ache or prolonged symptoms of ‘heartburn’ that don’t respond to medication as a guide.

Beat SCAD emphasised the need for midwives to insist on troponin tests being carried out when such symptoms were evidenced.

Awareness was undoubtedly raised among this important group of midwifery professionals, who will talk about SCAD with their colleagues and hopefully share the materials that Beat SCAD provided.

During the day, Karen and Sarah gained valuable insights into the current concerns and areas of focus for midwifery in 2017-2018.  These include:

  • Implementing the ‘Maternity Transformation Programme’, which came out of the ‘Better Births’ Report of 2016 and the Secretary of State for Health’s stated ambition to: halve the number of stillbirths, neonatal and maternal deaths and brain injuries by 2030.
  • The problem of data collection/sharing accurately and the future role of smart phone apps in helping midwives diagnose and monitor Mums and babies.
  • Human rights for pregnant women – in particular, the work of UK charity Birthrights The forum also noted that the European Convention on Human Rights remains in place in the UK after Brexit as it is not part of the EU infrastructure.
  • Ceasarian sections – Currently a woman has no absolute right in law to insist on a c-section. The forum expects that in 10 years’ time this will have changed and that women will have the right to choose an elective c-section should they wish to do so.
  • The new CEO of the Royal College of Midwives (RCM), Gill Walton, attended the meeting and spoke about her new role and the ‘big conversations’ that she wanted to have with everyone in the midwifery profession ‘from the bottom up’ during the early part of 2018 about what the RCM will come to look like over the next five years. She said that ‘safe care and individualised care’ is the aim and stressed that the consultant midwife group is the conduit for sharing best practice.

The Consultant Midwife role was created early in the noughties. While consultant midwives do not control budgets or get involved in day-to-day management issues, their role is to provide clinical excellence at the bedside, working closely with departmental management.  They act as a conduit for the expertise of senior midwives, spreading knowledge of best practice among all midwives and focusing on improving provision of services.

Beat SCAD has also been asked to make further presentations at individual hospitals (Epsom and St Hellier, Chelsea and Westminster) as part of their CPD (Continuing Professional Development) programmes, which is a great step forward.

All in all it was a very useful day – lots of information shared and lots of new leads created for our P-SCAD (pregnancy-related SCAD) programme!





Beat SCAD launches donations by text

Beat SCAD launches donations by text

As part of our campaign to raise money for continued research into SCAD, you can now donate to Beat SCAD using text messages!

In 2017 we donated £25,000 to the UK research project and a further donation of £3,000, profit from last year’s Prize Draw, will help with a genetics study.

We are well on the way to hitting the £25,000 target for the next donation to the project, thanks to some brilliant fundraisers.

If you have some spare cash, please consider donating to Beat SCAD so we can continue our work.

Donating by text is quick and easy – and you can add Gift Aid too, which helps us raise even more money!

To donate £10, for instance, just text SCAD25 £10 to 70070. You can donate £1, £2, £3, £4, £5 or £10 – just change the amount when you write the text.

Once you’ve sent a text, you’ll receive a message asking if you want to add Gift Aid.

Thanks to all our fundraisers and supporters. Please get in touch if you have any ideas for fundraisers and have a look at our How to Donate page for details of the different ways you can help.