Fungal Infection Trust supports several very active communities of patients living with fungal infection & their carers.
We support the running of the innovative patient & carer community based at the National Aspergillosis Centre
Patients attending clinic are provided with a monthly newsletter that summarises our meetings at the centre run by FIT supported NAC staff. The monthly meetings consist of an opportunity for all patients & carers to meet staff informally and just as importantly to socialise with fellow patients & carers. This provides valuable social support and presents an opportunity for NAC staff to talk about additional topics of interest designed to underpin clinical treatment for the benefit of each patient & carer.
The meeting is also a valuable resource that allows patients & carers to feedback comments and suggestions to NAC and has been used to encourage and support patient participation and involvement in scientific research projects run by the [email protected] group of scientists and clinical researchers based at University of Manchester and NAC.
The meeting is streamed live via the internet and recordings of each session are also made available after each session. Adding all of these routes of access to the meetings together we find that one in three of patients & carers attending NAC clinics watch the meeting with many more non-patients from UK and abroad also looking in.
FIT also supports patients and carers who cannot attend meetings at NAC by providing funding for a NAC staff member to support the running of regional groups across the UK and the United States, Canada and Australia, led by volunteer patients to again provide local social support with access to information on aspergillosis treatment & care via NAC.
For those who cannot travel far but who have access to a computer or smartphone each regional group has a group page on the Facebook network to assist community. Over 2000 patients and carers make use of these facilities (September 2016).
The Fungal Infection Trust also serve the needs of people who have a fungal infection of any sort by running, moderating and providing guidance on the NHS Choices website for Fungal Infection (over 800 people in September 2016).