On 12th July 2016 Action for Pulmonary Fibrosis met members of the All-Party Parliamentary Respiratory Group and other MPs to call for immediate action by NHS England to improve care for patients affected by Idiopathic Pulmonary Fibrosis and to mandate data collection of people diagnosed with the disease.
Follow the link to their website to read more……. http://www.actionpulmonaryfibrosis.org/research/fit-for-the-future-future-proofing-care-for-patients-with-ipf/
‘Fit for the Future: Future-proofing care for patients with IPF’ – summary of key findings
• The rising number of patients with IPF: Incidence of IPF is rising rapidly, with a 35 per cent increase in diagnosed cases between 2000 and 2008
• An increasingly ageing population: One in five people are expected to be over the age of 65 by 2035. Pressure on IPF services, as a condition which predominantly affects the older adult population, is likely to grow alongside the rate of ageing
• Challenges in delivering sustainable specialised services for uncommon conditions: Whilst some patients already receive excellent IPF care, variations in access to high-quality care, such as diagnosis from a multi-disciplinary team, persist.
• Difficulties in delivering effective preventative strategies without essential, accurate and definitive data: Now a new approach to data gathering is required so that the real number of patients with IPF may be better understood, to plan the strategies needed to slow and minimise the impact of IPF on patients and their families.