The British Lung Foundation (BLF) has published the first ever comprehensive idiopathic pulmonary fibrosis (IPF) information packs available to doctors, nurses and physiotherapists to share with their patients. The packs are intended to help patients, their families and carers better understand IPF and guide them to further trusted help and support.
The rates of IPF continue to rise yet there is still no known cause or cure for the disease and there is very little in the way of information about this progressive lung disease. Research has shown that over 30 per cent of patients who rely only on information from the consultation showed a lack of understanding of IPF.1 The IPF packs help patients by providing practical information that they can take away from a consultation and digest in their own time.
The packs will be made available to healthcare professionals so that they can be offered as the first point of reference for newly diagnosed patients. Healthcare professionals will be able to tailor the packs to their local area and hospital by adding resources and information. The packs are also available to order free from the BLF shop: http://shop.blf.org.uk/products/ipf-patient-pack.
The BLF has also coordinated a meeting in Parliament on 9 July for MPs and Peers to talk directly with IPF patients and carers about their experiences for the first time. The Department of Health has said it is very rarely contacted by Members about IPF, and the BLF has found that only per cent of MPs have spoken to a colleague or constituent about the issue this parliamentary term.
To find out more about IPF please visit the BLF IPF website: http://www.blf.org.uk/IPF.
Ruth Fleming, IPF Project Manager at the British Lung Foundation, said:
"The packs include balanced, basic information to prevent patients from being overwhelmed after they are diagnosed. However, they also provide an easy way of getting hold of further, more detailed information whenever the patient feels the time is right for them to find out more.
"We are always being told by people with IPF that they do not get enough information when they are first diagnosed. We hope that these packs will provide the much needed information to people with IPF and their families."
Dr Helen Parfrey, Consultant Respiratory Physician at Papworth Hospital, Cambridge, said:
"Being able to provide patients with accurate and digestible information is an absolutely key part of a patient's journey after diagnosis. Family members and carers are also in need of support, so it is really welcome that they too can access help and information through these packs.
"With these packs we will be able to direct our patients to trustworthy and reliable sources as well as other avenues of non-medical support, such as the BLF Helpline, while also adapting the packs so that they are as relevant and useful to patients as possible."