Action for Pulmonary Fibrosis calls for immediate action from NHS England to improve care for patients suffering from IPF
Today Action for Pulmonary Fibrosis met members of the All-Party Parliamentary Respiratory Group and other MPs today to call for immediate action by NHS England to improve care for patients affected by the devastating lung disease Idiopathic Pulmonary Fibrosis and to mandate data collection of people diagnosed with the disease.
At the launch in London of the charity’s new report, “Fit for the Future: Future-proofing care for patients with IPF”, sponsored by Stephen McPartland MP, Chair of the APPRG, Dr Helen Parfrey, Respiratory Consultant at Papworth Hospital and a trustee of Action for Pulmonary Fibrosis explained how simple changes could help change the lives of IPF patients:
“As trustees for Action for Pulmonary Fibrosis we meet patients on a daily basis. We have carried out the largest-ever survey of IPF patients…and we have been listening to patients’ concerns and experiences.
“Our data demonstrates that there are significant geographical variations in both the availability and the delivery of basic, essential care for people with this terminal lung disease. We work on figures of between 15,000 and 30,000 but the number of patients could be double that. How can the NHS be expected to provide best care without this information?
“We ask that NHS England mandate data collection on people diagnosed with IPF.”
Charity Ambassador, Tony Gowland (59), an IPF patient diagnosed five years ago also told MPs:
“After diagnosis I basically discovered that I was likely to die within three to five years, should expect to slowly suffocate, that no-one knows what caused my disease, that there are no effective treatments and no-one is even near finding a cure.
And I just went to the doctor with an annoying cough. Action for Pulmonary Fibrosis is, in my opinion as a ‘lay’ person, asking for simple and straightforward actions that would potentially change the lives of IPF patients and their families and give them some hope for the future.”
Mike Bray, Chairman of Action for Pulmonary Fibrosis said:
“As an IPF patient myself, who was very fortunate to receive a single lung transplant five years ago, I think it is shocking that the NHS doesn’t accurately know the number of patients with IPF. How can patients expect to get adequate care and how can the NHS plan funding for IPF services when I believe it does not know the size of the problem?”