RCN backs charity’s call to fight lung disease

The RCN has backed a charity’s call to form taskforces to combat a life-limiting lung disease

The RCN has backed a charity’s call to form taskforces to combat a life-limiting lung disease.

About 5,300 people die of idiopathic pulmonary fibrosis in the UK annually. Picture: SPL

The British Lung Foundation includes the recommendation in its report on idiopathic pulmonary fibrosis (IPF). Approximately 5,300 people die in the UK every year from the condition, which causes scarring of the lungs. A significant number die within three years of diagnosis.

The charity wants two taskforces to be set up and is asking supporters to lobby their MPs to help achieve this.

Nurses' strategic input

According to the British Lung Foundation, nurses in a taskforce that would England and Scotland would contribute to five-year strategies to improve outcomes. Those on a Wales and Northern Ireland taskforce would work to help the devolved governments integrate a national plan for IPF with existing strategies.

Other recommendations in the report include:

  • Creating local interstitial lung disease (ILD) networks across the UK for healthcare professionals, policymakers, commissioners, charities and patients to improve services.
  • Developing ILD pathways designed around key principles in the report.
  • Improving access to personalised treatments, diagnosis and support.
  • Evaluating and improving ILD services by improving data recording and sharing.

The National Institute for Health and Care Excellence quality standards for IPF state that everyone with IPF should have access to the care of an ILD specialist nurse.

The British Lung Foundation report A map for better care: making effective care pathways for people with ILD adds that such specialist nurses play an ‘essential role in helping people coordinate their care and understand their condition’.

Limited access to specialist nursing

The report reveals that in the charity’s 2015 survey only 39% of people reported they had frequent contact with an ILD nurse and 36% said they had no access at all. The same survey revealed there is only one specialist nurse employed to cover the whole of Northern Ireland.

    Head of nursing practice at the RCN and chair of the Association of Respiratory Nurse Specialists Wendy Preston, said: ‘Prognosis for people living with IPF is worse than for many cancers.

    ‘The number of people dying from IPF has increased sixfold in the last 40 years, and we have little understanding of the reasons.

    ‘There is no known cure – current treatment can only slow the scarring on the lungs and it is essential that holistic care is available that includes timely palliative care.

    ‘It’s clear more needs to be done in the fight against IPF, and we support the British Lung Foundation’s call for a lung health taskforce to improve the outlook for patients.’

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