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Better life with a rare disease

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Being told nothing could be done for patients with a rare lung disease was a “lightning bolt” for Annette Duck, who vowed to improve their lives

How much difference can one person make? In the case of Annette Duck, a lot.

A recently retired NHS nurse at the University Hospital of South Manchester and trustee for the charity Action for Pulmonary Fibrosis, Ms Duck continues to be a passionate advocate for patients with interstitial lung diseases (ILD).

Retirement from the NHS in December has not slowed Ms Duck’s efforts to raise awareness about ILD and idiopathic pulmonary fibrosis (IPF) and search for better outcomes for patients with these diagnoses.

Ms Duck, who originally studied to be a midwife, first came into contact with patients with pulmonary fibrosis when working in the respiratory and lung transplant unit at the University Hospital of South Manchester.

“There, I met patients who were dying quickly, unsupported and with many unmet needs. I felt very sorry for these patients with IPF,” Ms Duck said.

When she consulted with hospital superiors about supporting patients affected by the condition, she was disappointed with the nihilistic response she received. “I was met with the response: ‘We can’t do anything about them, so why should you be able to?’.”

“That moment was like a lightning bolt for me,” Ms Duck said. She then made a pledge to help and support these patients wherever she could.

Since then, she has been involved in clinical research trials, and conducted her own research study into the experiences of patients with IPF.

Interstitial lung diseases encompass over 200 lung disorders, and IPF is one of the most common. More than five million people worldwide have IPF, and half of those affected die within three years of diagnosis.

About 5,000 patients in the UK are diagnosed with the disease each year. Difficult to diagnose and mysterious to many healthcare providers, IPF is often confused with more prevalent lung conditions such as asthma or chronic obstructive pulmonary disease and can go misdiagnosed if not investigated properly, according to Ms Duck.

“Patients with pulmonary fibrosis are sort of falling through the healthcare cracks,” said Ms Duck. “I started learning from patients what I could do for patients affected by IPF, which led to creating protocols, writing articles for nurses and putting on study days for other respiratory nurses.”

Ms Duck’s role as a trustee for Action for Pulmonary Fibrosis is making strides in the right direction. Founded in 2013, the organisation’s main goal is to raise awareness and funds for research into IPF.

For patients with an illness like IPF, it can be unnerving to discover their nurse or general practitioner are unfamiliar with it, which is often the case as IPF is relatively rare. For this reason, Ms Duck promotes education among health professionals about the disease. She is developing an ILD module with Respiratory Education UK for start in April this year. “I’m retired from my previous role, but I want to continue educating nurses and spending time on IPF,” she says.

Because they have a condition that is not widely understood, patients appreciate nurses who understand what they are going through, says Ms Duck. “So many patients have commented: ‘It’s so nice to have someone who understands’,” she says.

Though the disease is incurable, Ms Duck is hopeful about improving outcomes for patients with IPF. Recently, the drug pirfenidone was recommended by theNational Institute for Health and Care Excellence for the treatment of mild-to-moderate IPF; it was approved by the European Medicines Agency in 2011.

Patients with pulmonary fibrosis are sort of falling through the healthcare cracks

Ms Duck is working with Partizan Health to set up a home telephone support service for patients starting pirfenidone. The drug is not a cure, but has been shown to slow the disease’s progression in recent clinical trials.

“It’s a very sad illness to get,” said Ms Duck. “We don’t fully understand its causes or genetic links, so we will continue to promote research funding to find a cure.”

Rachel Stanback


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