During IPF World Week the Action for Pulmonary Fibrosis (APF) charity have launched a report, “Working Together: delivering a better future for patients with IPF”
Responses from 312 patients and 18 hospital trusts across the UK have informed this report which can be accessed in full at: http://www.actionpulmonaryfibrosis.org/ipf-patient-survey-report
Asked what care patients with IPF need to live as long and healthy a life as possible respondents stated that co-ordination of patient care by an Interstitial Lung Disease clinical nurse Specialist was vital. This is supported by the NICE Quality Standard on the management of IPF care in England published in January 2015. Yet many patients have no access to such support. ARNS as the voice of respiratory nursing calls for continuing investment in respiratory specialist nurses who are dedicated to improving the lives of patients suffering from lung conditions
Anne Marie Russell NIHR Clinical research fellow and a member of ARNS Executive Committee said: “IPF is a devastating condition the trajectory of which is unpredictable. Living with uncertainty can be stressful for patients and so the role of the ILD CNS is vital; not only to co-ordinate care, but to anticipate needs and ensure prompt referral to appropriate services”
We urge you to read the full report and to bring it to the attention of nurse managers.