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'Families just weren’t being cared for as well as they could be'

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Working with families who may have inherited cardiac conditions is hugely fulfilling for Melanie Doyle

Melanie Doyle’s role is rare and very few people can do or understand it. But the unusual job description was what appealed to this genetic cardiac nurse, with some 20 years’ experience. She “jumped at the chance” of a new post with genetics at its core and took it up in 2008 after back problems forced her to change her job.

Ms Doyle needed to find a role that was fulfilling and did not strain her back. Enter the British Heart Foundation. “For a long time, families with potential inherited cardiac conditions weren’t cared for in a streamlined way, so the BHF decided to sponsor nine nurses for the new genetic cardiac nurses scheme.” Hospitals bid to take on qualified nurses to coordinate inherited cardiac conditions services. Ms Doyle was the first to start.

The BHF sponsors nurses for three years, the aim being that trusts continue the funding after that time. The BHF also funded the nurses to take Masters-level courses, helping them understand the genetic aspects of the role.

“This was the job I wanted because it was bit different,” recalls Ms Doyle. “Families just weren’t being cared for as well as they could be. Prior to the BHF’s involvement, there were only a few nurses in such roles across the country. Families were being seen in separate appointments by cardiologists and geneticists. My role is to have a much more personal interaction with patients and their relatives.”

One major difference that resulted is the collaborative approach to diagnosing family members with possible hereditary conditions. “I run a weekly clinic,” says Ms Doyle. “We discuss the condition then draw a family tree, trying to work out who else might have inherited it.”

Untreated or undiagnosed inherited cardiac conditions can result in a sudden death - sadly this can be how the condition is discovered in a family. This generally occurs in people under 40. “Young people can have a condition and be totally asymptomatic - and then just drop dead.”

Ms Doyle’s clinic organises monthly consultations with individual cardiologists and geneticists to allow for more detailed analyses to be given to patients. The rest of her time “consists of organising cardiac investigations, talking to families, chasing up family notes, and post mortems. My job is making sure we have all the information in one place for when the doctors need it for treatment decisions.”

If a patient has an illness, the next step is treatment. “These conditions can often be managed with medication and/or lifestyle changes. They may need further investigation and genetic testing may be available; if we find a gene change in a patient with a condition, it’s a case of blood testing their family to screen for the same condition. If we don’t find a gene change, we screen relatives on a regular basis.”

The rewards of the job are self-evident for Ms Doyle. Owing to the more human approach that combining disciplines allows her to offer, she finds patients are positive about their experience. “The main part of my role is being that point of contact throughout the process. [Patients] don’t want to go through the painful telling of their relative’s death every time they meet a specialist, so they may want me to be there as someone who knows everything already.”

Neither Ms Doyle nor the hospital expected the clinics to attract many families after a sudden death; it was thought roughly 10 would be seen per year but, in reality, it has been around 17.

“Fortunately inherited cardiac conditions can be identified before a sudden death occurs [through] coincidental findings [and] individuals presenting with symptoms. Others are picked up because of family histories or because of a screening somewhere else in the UK”, explains Ms Doyle.

“The thing that makes me carry on after a tough day, week or month can be as simple as getting a ‘thank you’ card. I got one from a lady who lost her 18-year-old son - she took the time to thank me despite everything she was going through. That meant a lot and showed me what I was achieving by helping these people.”

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