Health scare inspires Uist woman’s work

A research grant of over £180,000 to expand the work she is involved in with Edinburgh Napier University has just been confirmed.

Mary was herself struck at the age of 39 by Spontaneous Coronary Artery Dissection, known as SCAD, which cannot yet be prevented or predicted. She attributes her survival to the excellent care she received from the moment she called NHS24 from “remote Bornish” in 2014.

“It hit me out of the blue”, she says. “I was so very lucky. There was no family history of heart disease and no warning signs”.

SCAD occurs when one or more of the inner layers of a coronary artery tears away from the outer layer. Blood is able to flow into the space between layers and a clot forms. This can lead to a heart attack or cardiac arrest.

Since her initial recovery, Mary has worked to promote awareness of the disease and help ensure that women everywhere have access to the same standard of diagnosis and treatment she benefited from.

The first attack ended her teaching career and she has subsequently been through “multiple SCADs”. Worry over re-occurrence is one of the psychological as well as physical challenges faced by patients.

In 2018 Mary met fellow SCAD patient Margaret Davis. They joined forces and set out to raise awareness, meeting other women with similar experiences who confirmed there were serious gaps in patient care.

Margaret worked with BHF Scotland and wrote to MSPs while Mary took to Twitter, engaged with the Scottish Ambulance Service and explored research papers and guidelines.

This work brought them into contact with Professor Lis Neubeck of Edinburgh Napier University’s Centre for Cardiovascular Health, which was established just last year. Since then, they have been collaborating and exploring potential SCAD patient-based projects. Prof. Neubeck led the first global systemic review of how the condition is recognised and treated and invited Mary to co-author.

This project has now won a grant of £185,000 from the Burdett Trust for Nursing which was established in 2002 with the aim of making charitable grants to support the nursing contribution to healthcare throughout the UK.

More than 90 per cent of around 600 SCAD patients in Scotland are women, mainly of a relatively young age. Mary is aware of at least two other current cases in the Western Isles.

Mary recalls being awakened by crushing chest pain, her heart thudding and pain between her shoulder blades and left arm. Other symptoms included hot and cold flushes and severe vomiting.

Although she was reluctant to go to hospital, the local paramedic who knew her realised that there was something far wrong. She recalls: “The first thing I did was to apologise to the paramedic for calling him out, saying it was probably nothing. I had convinced myself it wasn’t serious”.

After four days in the Uist and Barra Hospital, she then suddenly deteriorated as the SCAD tear extended. She was rushed by coastguard helicopter to the Golden Jubilee Hospital in Clydebank where she again counted herself fortunate that the consultant cardiologist was familiar with the condition – which, she stresses, was by no means guaranteed.

She spent two weeks in hospital and says she was “terrified to leave”. Mary had very limited mobility and extreme fatigue. “I live alone and felt that I was supposed to feel a good deal better than I actually did, both physically and mentally”. In Uist, however, she gradually recovered with first-class cardiac rehab support.

Mary says: “I have met so many women who haven’t had my care experience and I have been blown away by some of the horror stories I’ve heard. You don’t want care to be a postcode lottery and there is so much research needed.

“Margaret and I survived but others don’t. We want other women to be assured of the same care and support that we experienced. Women’s heart health care is not a level playing field and the statistics back that up”. She attributes the historic lack of awareness about SCAD to the fact that most research into heart disease is male-led.

The funding secured will inform and complement components of cardiac rehabilitation programmes and will provide much needed tailored support for SCAD patients. Mary and Margaret continue to campaign for a SCAD specialist clinic in Scotland and changes to care guidelines.

Mary is also backing a campaign for the appointment by the Scottish Government of a Women’s Health Champion. The role was announced as one of the priorities when they launched a Women’s Health Plan a year ago but it then emerged that the “champion” might not be appointed for another three years.

That prompted 17 leading charities to write a letter in May calling for greater urgency and, under mounting pressure for action, the First Minister promised in June to fill the post before autumn, after England appointed its own women’s health ambassador months after announcing the role.

Mary said: “We are pressing for Nicola Sturgeon to deliver what she promised and it is difficult to understand why there is so much delay. It is certainly needed and there was also a commitment for every NHS Board to have its own Women’s Health Champion”.