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‘I love the improvements that can be made to someone’s life’

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As well as caring for patients, it is the science of nursing and helping patients that appeals to Louise Arnold, as she explains to Shivani Chande



We expect a nurse to have their patient’s best interests at heart; to make decisions that will not only ensure their patient is comfortable, but ultimately, have a positive impact on their health.

Louise Arnold is a clinical nurse specialist and the lead nurse for the national paroxysmal nocturnal haemaglobinuria (PNH) service at St James’s Hospital in Leeds. Due to the rarity of this condition, there are only a small number of specialists in its management, and a national service was set upto allow patients access to specialist care.

With over 17 years’ experience in haematology, Ms Arnold makes decisions that may feel counterintuitive to a nurse, but ultimately improve the long-term outcomes for her patients. She plays a critical role in ensuring high-quality care for people with specific needs.

Many nurses enter into the profession because they have family members who are also nurses, but Ms Arnold had a different reason. She sees nursing as a science and her interest in the topic influenced her career choice. “I’ve had a curiosity about life and the workings of the human body since I was young, and this made me want to become a nurse,’’ she says.

Ms Arnold says that making life better for patients and being able to make a difference is what she loves about her role. The growing amount of research and awareness of rare diseases supported her decision to continue in her career as a clinical nurse specialist.

”To be an effective nurse is to be social and approachable”

As a haematology nurse, when presented with a patient with a rare disease diagnosis in her care, Ms Arnold took it upon herself to read information around rare disease diagnosis. When she could find only a small paragraph in a textbook about PNH, she was motivated to add to the volume of research available. Now, after years of working in clinical trials, including developing a new treatment – the first of its kind for this disease – Ms Arnold is proud to see how far research has come. Seeing a treatment being first adminstered in clinical trial to gaining a licence and being available on the NHS was a lifechanging and exciting experience.

“It seemed an unreal thought – developing a service and lobbying in Parliament – but now I feel so proud,” she says. “To be an effective nurse is to be social and approachable.”

This way of thinking has been influenced by patient feedback on what they find valuable.

“It is important to help patients understand that someone is there for them, who understands the disease and what they are going through,” she says.

PNH can have life-threatening consequences and delays in diagnosis are common. The challenges of meeting a patient who has had a delayed diagnosis and had this condition, often for many years, can be difficult but rewarding.

‘‘A patient who was unable to manage getting out of bed due to PNH, going back to full-time work and caring for their family due to their treatment is inspiring to me.’’

Today there is no “average day” for Ms Arnold – they change from day to day and patient to patient. She and three other clinical nurse specialists across the national service share the responsibility of planning care for over 600 patients. Her workload is not only large, but complex, as there is little room for error, “a delay in dosing, by a couple of days, can bring life-threatening complications,” she says.

Ms Arnold also organises patient care beyond the acute setting, ensuring continuity of care outside of hospital.

“We have clinics at St James’s Hospital in Leeds and eight outreach locations to give better access to patients across the country’’.

She can be travelling to Southampton, then catching a train to Birmingham, Peterborough or even Manchester to carry out a clinic, before returning home.

“Another day I can be on the phone arranging an acute delivery of therapy,’’ she says.

It is all about making the right decisions. What gives her job satisfaction is making a difference to patients’ lives; “seeing patients return to day-to-day living when they have previously had to give up work, managing their care through pregnancy, which before specific treatment was available was discouraged.’’

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