Good news for IPF patients: The National Institute for Health and Care Excellence (NICE), the independent body responsible for driving improvement and excellence in the health and social care system, has released new guidelines on the chronic lung disease, idiopathic pulmonary fibrosis (IPF). It is the first time guidelines of this kind have ever been published by NICE, highlighting a positive milestone for IPF patients.
Fantastic !!I I have been waiting for this.....wonder how long they have to put all this in practise? presumably it should now be acted on for current patients? My husband's consultant had his respiratory nurse taken away from his clinics, and initially took the attitude that nothing could be done so he didn't want to see him for a year, then he would discharge Keith to the GP.I contacted the BLF helpline and got some very good advice, and tried to get pulmonary rehab - by the time it got sorted out it was too late, Keith was too ill to take part, and anyway it was all COPD biased and I don't think the physios knew how to handle IPF - he is on oxygen, but our community resp. nurse only wants to see him 6 monthly, despite the fact that he is deteriorating. The guidelines call for Interstitial Lung Disease nurses to be available at all stages - I wish !!! The guidleines also say that the Pulmonary rehab offered should be specific to IPF and in an accessible setting, also that people should be re-assessed periodically. It all sounds wonderful - but probably too late to make much difference to people like my husband. There is a section about GP awareness - our experience was abysmal in that respect, particularly when you consider that Keith's father had IPF and I asked repeatedly (over 18 months) if that was Keith's problem when inhaler therapy didn't work.The guidlines say prednisolone is not appropriate - Keith's been on it since Christmas. Frustrating !!
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