APF met with the All-Party Parliamentary Respiratory Group
Action for Pulmonary Fibrosis trustees were at Westminster on December 7th to meet for a second time with Stephen McPartland MP, chair of the All-Party Parliamentary Respiratory Group, to discuss improving care for IPF Patients.
The charity presented their report ‘Fit for the Future:Future-Proofing care for patients with IPF’ in the summer to MPs and Mr McPartland pledged his support. He will be working with the charity to raise the profile of the disease and to lobby NHS England on behalf of IPF patients.
The report showed that the true extent of IPF is unknown as cases aren’t recorded correctly and APF called for the mandatory collection of data in order that services for patients can be adequately provided and meet with the NICE Quality Standards.
Mr McPartland said he was shocked by the report’s findings:
“The fact that as the NHS and the government we do not know how many people are affected by this disease in my constituency Stevenage, the clinical Commissioning group of Hertfordshire, or England, or the United Kingdom, is totally unacceptable and I am not prepared to accept that.
So I am going to work with Action for Pulmonary Fibrosis to push forward so that we have some kind of way of forcing NHS England to record this data so that we know where the patients are with this disease and what we can do to support them throughout their condition.”