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ROLE MODEL

'We're putting heart failure on the clinical, social, economic and political agenda'

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A career in cardiac nursing led Angela Graves to a new role supporting patients with heart failure

Heart failure specialist nurse Angela Graves walked into parliament in June 2013 with a purpose: to raise awareness of heart failure. She left with the signatures of more than 60 MPs and members of the House of Lords who pledged to promote services and treatment for those affected.

Her presentation, Don’t Fail on Heart Failure, discussed the impact the syndrome has on a person’s quality and length of life, as well as the provision in place for patients and their carers.

“It was a terrific day,” Ms Graves says. “A little nerve wracking, but very inspiring, realising that here was the home of democracy. The MPs and members of the House of Lords were very welcoming of my message to get them to champion the cause of patients with heart failure.”

Ms Graves began her nurse training in the 1970s. She says she went into nursing because of “that feeling of wanting to care for people. It’s as simple as that”. After taking a break, she returned to the profession in the 90s, retraining as a cardiology nurse.

She is now the clinical lead for the Pumping Marvellous Foundation, a charity for people with heart failure, which aims to support for those with the condition and raise awareness of it.

Two decades ago, when she returned to nursing, there was not much in the way of help for such patients, especially after they were discharged. The advent of the 21st century and better medicine, however, saw increased care for them in hospital, although outpatients still had little support.

Although Ms Graves has only been in post for just over six months, she has been with Pumping Marvellous since its inception in 2010. Founder Nick Hartshorne-Evans, who has heart failure, was one of her patients.

“Seeing the patients through their journey - that’s what is so wonderful about the heart failure field.”

“We like to think of ourselves as a ‘rock star’ charity,” Ms Graves says, adding that the organisation is “very innovative and very different. Very bold.” And the foundation is different - it is one of the charities for patients with heart failure in the world.

Pumping Marvellous is “run by patients for patients,” says Ms Graves. Her job is “not to give clinical advice but to make sure that anything we do or anything we write is clinically correct.”

She is also a consultant nurse in heart failure, has been a heart failure specialist for more than a decade and is a Queen’s Nurse. As such, she says she believes “in having effective community services, especially for long-term conditions such as this.”

Ms Graves views the relationship between a nurse and a person who has heart failure as a partnership. Those who have the syndrome are often on a complex regimen of medication, and it can be difficult to provide the best care. “It’s the challenge of providing the care that meets the patient,” she says.

“Seeing the patients through their journey - that’s what is so wonderful about the heart failure field.”

Ms Graves has looked after mothers who have peripartum cardiomyopathy, a type of heart failure that happens either around five weeks before, or up to five months after, giving birth. The joy of having a baby can be at war with the worry and fear that comes with the condition. “To look after those women is really moving,” she says.

Pumping Marvellous provides several outlets of support for people with heart failure, from providing information to patients that is written by patients and teaching them how to self-manage their condition, to offering them a private Facebook group where people with heart failure can gather and support each other. The foundation also aims to raise awareness about heart failure and the diversity of the  syndrome.

What was a local charity is now a global one. Ms Graves and others travel throughout Europe to give presentations and disseminate information on heart failure. “It’s putting heart failure on the agenda,” she says, “it’s putting it on the clinical, social, economic and political agenda.”

Whether it is advocating for those with heart failure in parliament or raising awareness abroad, Ms Graves says she is always speaking on behalf of the patient.

“It’s just tapping into the skill the patient has because, at the end of the day, they know what it’s like to live with this condition.”

Kathrine Schulze

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