Nurses support world-first standards for uncommon lung disease

NTM Network UK, a group featuring nurses, doctors and other health professionals with an interest in NTM disease, which covers a range of bacterial infections that usually affect the lungs, recently launched its Standards of Care.

“There is an urgent need for consistent, standardised, high-quality care to be provided to people with NTM disease”

NTM Network UK

The standards are a world first, the organisation said in an announcement on Wednesday, 31 July, and feature “comprehensive guidance” on how to look after patients with what can be a difficult condition with diverse symptoms and care pathways.

NTM Network UK said that there had been “significant variations in care” for people in the UK with the disease, something it found following two studies.

These variations included issues with management of the condition – described in the standards as being relatively uncommon – not always being patient-centred, and a lack of standardisation in pathways.

“There is an urgent need for consistent, standardised, high-quality care to be provided to people with NTM disease in the UK, irrespective of where they are managed,” a foreword to the standards reads.

It added: “[The standards] aim to provide a written guide to the minimum level of care that people living with NTM disease should expect to receive in the NHS.”

The organisation said the standards featured good practice indicators which could be measured to ensure care was on track, and to identify how to improve it.

Further, NTM Network UK hoped guidance could help improve diagnostic accuracy and “streamline” the process of getting patients on the right pathway, in turn improving their outcomes.

Bronchiectasis and tuberculosis nurse Helen Dunning, based at Royal Devon University Healthcare NHS Foundation Trust, backed the standards.

She said of the launch: “As nurses, we play a key role in supporting our patients with NTM disease, and these standards will help us to deliver the consistent, high-quality care we all strive to achieve.”

Professor Marc Lipman, chair of NTM Network UK, said the launch of the standards marked a “pivotal” moment in care for the disease.

“Our aim is to ensure consistency across the NHS, so that every patient, irrespective of where they are managed, receives the best possible treatment,” said Professor Lipman.

“The standards emphasise the importance of a multidisciplinary approach, involving dietitians, doctors, physiotherapists, pharmacists, nurses and other healthcare professionals.

“Each discipline plays a critical role in delivering holistic, person-centred care, tailored to the unique needs of people with NTM disease.”