Patients & Carers meeting May 2015
| Date | Speaker | Title | Time starts | Duration |
| May 2015 | Graham Atherton | Summer booklet | 0'00'00secs | 0'23'30secs |
| Antifungal interactions | 0'23'30secs | 0'04'50secs | ||
| London marathon result | 0'28'20secs | 0'01'50secs | ||
| Run4fun(gus) 10k | 0'30'10secs | 0'01'05secs | ||
| Chris Kosmidis | Q & A | 0'31'15secs | 0'49'45secs | |
| Led by Graham Atherton | Entire meeting (alternate version) |
Chris Kosmidis is one of the Consultants and the National Aspergillosis Centre and he agreed to talk to our community meeting, answering questions raised from the audience on the day and from our online groups who had been asked for questions prior to the meeting. A total of 15 subject were raised and answered in full by Chris during a very pleasant and informative meeting.
Resources mentioned in this meeting
Facebook Community Support Group
Fungal Infection Trust Appeals www.fit.care
Donate to Fungal Infection Trust by mobile phone (UK only) - to donate £5 send the message ASPE14 £5 via SMS text to 70070
Patients & Carers meeting March 2015
This month we had to cancel our meeting as we had to attend a very important meeting along with some of our patients & carers with the UK commissioning group NCG. This group funds the National Aspergillosis Centre (NAC) and has a committment to listen to and involve our patients in many of our decision making processes in connection with the running of NAC.
National Commissioning Group (NCG) want to hear about our achievements for the year on an annual basis via a face to face meeting and this year it happened to be on the 6th March.
Our disappointment was offset by the request to include the views of our patients & carers in our presentation to the commissioners – a real sign that your views are as important to the people that fund the service as anyone else’s view. Five patients & carers volunteered to represent your views at the meeting and raised several issues that may well not have been aired before, each drawing a considered response. Jean travelled from Birmingham and Julie from Bexhill-on-Sea spoke at length about how their lives had been changed by aspergilloma and the benefits they had gained from using NAC. They also reinforced opinion stated elsewhere that it is difficult for some to travel the distances needed to get to NAC. Another comment from Keith in Bristol provided an excellent example of how difficult some are finding it to get a referral to NAC. This triggered an in depth conversation and the Commissioner made several points;
1. We are to explore ways to provide a more locally accessible service for the South East though there are still major difficulties to resolve,
2. Some GP’s might not be aware that NAC services are free of charge to GP practices for those with chronic pulmonary aspergillosis (not ABPA) – increase awareness on that point,
3. A particular train company offers free transport to other national service centres so might be prepared to help our patients too – commissioner is looking into it for us.
None of these points would have been covered at the meeting without our patients input. This is a prime example of how your input helps us provide a better service so many thanks to Julia, Jean and Keith for their hard work on behalf of all of us.
Patients & Carers meeting February 2015
| Date | Speaker | Title | Time starts | Duration |
| February 2015 | Debbie Kennedy | Antifungal drugs and their management | 0'00'00secs | 0'24'20secs |
| Graham Atherton | Antifungal interactions | |||
| Spring booklet | ||||
| London marathon fundraiser | ||||
| Led by Graham Atherton | Entire meeting (alternate version) | 1'16'25secs |
Resources referred to in this talk
Virgin Money Giving website for Fungal Infection Trust (UK and overseas)
Donate to Fungal Infection Trust by mobile phone (UK only) - to donate £5 send the message ASPE14 £5 via SMS text to 70070
Patients & Carers meeting December 2014
| Date | Speaker | Title | Time starts | Duration |
| December 2014 | Graham Atherton | Christmas Quiz - an opportunity to test your knowledge about living with aspergillosis | 0'00'00secs | 1'32'50secs |
| Led by Graham Atherton | Entire meeting (alternate version) | 1'32'50secs |
Patients & Carers meeting November 2014
| Date | Speaker | Title | Time starts | Duration |
| November 2014 | MSc students (all studying for MSc in Medical Mycology here at NAC) | Personal introductions to Medical Mycology in many different countries | 0'00'00secs | 0'33'00secs |
| Evelyn | Her own story and why this group is worthwhile for patients | 0'33'00secs | 0'46'45secs | |
| Graham Atherton | AOB: Winter support booklet | 0'56'55secs | 1'22'54secs | |
| Led by Graham Atherton | Entire meeting (alternate version) | 1'35'45secs |
Resources referred to in this talk
Living with a lung condition - British Lung Foundation (BLF)
British Lung Foundation financial support pages
British Lung Foundation Helpline for chronic lung disease
Patients & Carers meeting October 2014
| Date | Speaker | Title | Time starts | Duration |
| October 2014 | Graham Atherton | Diagnosing Aspergillosis | 0'00'00secs | 1'31'39secs |
| Led by Graham Atherton | Entire meeting (alternate version) | 1'31'39secs |
Resources referred to in this talk
British Lung Foundation financial support pages
British Lung Foundation Helpline for chronic lung disease
Immunodiffusion technique for detecting antibodies that are being made by our bodies to fight fungal infection.
See also Aspergillus Website diagnosis section
Patients & Carers meeting September 2014
From now on we will present synchronised slidecasts via software called iSpring. This has several advantages e.g. you will be able to see all slides and move from one to another by clicking on the titles on the right hand side. The slides can be seen more clearly too, and people will be able to use a broader range of viewing devices. However we have found that the system has to download more data to start each presentation and that leads to one drawback - it takes up to a minute or two to start even on fast broadband connections. We hope you find the wait worth it!
| Date | Speaker | Title | Time starts | Duration |
| September 2014 | Danielle Yuill | Giving patients and carers a VOICE | 0'00'00secs | 54'15secs |
| Chris Harris | Better together, CallPlus, Ring & Ride | 54'15secs | 1'11'30secs | |
| Led by Graham Atherton | Entire meeting (alternate version) | 1'27'30secs |
Resources referred to in this talk
British Lung Foundation financial support pages
British Lung Foundation Helpline for chronic lung disease
CallPlus (Manchester only)
Ring & Ride (this link is to Manchester, but the service is widely available throughout the UK.
Healthier together - proposals & survey for the future if Greater Manchester Hospitals
Patients & Carers meeting January 2014
| Date | Speaker | Title | Time starts | Duration |
| January 2014 | Graham Atherton | New antifungal drug class reported | 0'00'00secs | |
| Pippa Newton | What is Pseudomonas? | 0'31'15secs | ||
| Led by Graham Atherton | Entire meeting | 1'45'26secs |
Patients & Carers meeting December 2013
| Date | Speaker | Title | Duration |
| December 2013 | Led by Graham Atherton | Entire meeting | 1'12'29secs |
Patients & Carers meeting November 2013
| Date | Speaker | Title | Time starts | Duration |
| November 2013 | Caroline Hawkridge | Using creative projects to enhance awareness | 0'00'00secs | |
| Graham Atherton | How antifungal drugs work | 0'40'59secs | ||
| Led by Graham Atherton | Entire meeting | 1'31'56secs |