A key aim of Action for Pulmonary Fibrosis is to increase the number of IPF support groups and make them accessible to as many patients as possible. We are actively encouraging and helping to set up patient support groups across the UK. The success of IPF patient support groups is evident from the reports of patients and family members who attend. However, although more groups have been set up recently, many more are needed.
Giving you a voice
The charity has quickly become recognised at national level, being consulted on issues relating to IPF, having presented to a parliamentary group and contributing to NICE consultations. Having a voice in debates and consultations about Idiopathic Pulmonary Fibrosis; enabling us to advocate for patients, is an important aspect of our work. Our Chair, Karen Hughes, also works at European level, representing the charity on the European IPF Advocacy Group which has developed a European IPF Patient Charter to be presented to the European Parliament.
Raising awareness with the medical profession
The lack of knowledge about IPF amongst the medical profession generally is well recognised and leads to difficulties for many patients when requiring treatment from GPs and local hospitals. There is also a need for more trained ILD nurse specialists.
Action for Pulmonary Fibrosis supports current training and is looking for ways to engage with more non-specialist staff to improve the level of understanding of the disease more widely across the NHS.
A big thank you goes to our many fundraisers who have helped us to become established. We are developing partnership working where appropriate and seeking grants to carry out activities that meet our aims. This will enable us to grow as a charity, to make an positive impact on living with the disease and to contribute to research activities aimed at improving the outcome for patients.