A discussion to collect ideas and discuss the forthcoming new handout for the purpose of communicating our support with patients who do not use computers
1. Support Meeting for
Aspergillosis Patients & Carers
LED BY GRAHAM ATHERTON
SUPPORTED BY
NAC CENTRE MANAGER CHRIS HARRIS
PATIENTS QUARTERLY
NEWSLETTER
NATIONAL ASPERGILLOSIS CENTRE
UHSM
MANCHESTER
Fungal Research Trust
3. Monthly Newsletter
Offline support – nearly 50% of patients can only
access help & support offline
Quick read, promotes support groups (online &
offline)
4. Quarterly Newsletter
Identified a need for better offline community
building
Need a way to provide more information
Promote more widespread support of patients &
carers
5. Quarterly Newsletter
Offline community building
Phone network manned by patient/carers
Content from the community, for the community
Q & A
Recipes/poetry
Other meetings?
Different parts of UK ??
6. Quarterly Newsletter
Some content will be permanent reference
Phone number(s) of network organiser
Other contact number for services
Some one quarter only? (factual articles)
Some to be repeated annually? (Poems, Recipe, art)
9. Quarterly Newsletter
What else?
Content written by patients AND carers – a story, an
experience?
Regular column to be written by patient/carer,
different one each month?
10. Get your thoughts back to me
0161 291 5866 leave messages
Letter to Dr G Atherton
National Aspergillosis Centre
Second Floor
Education and Research Centre
Wythenshawe Hospital, University Hospital of South Manchester NHS
Foundation Trust
Southmoor Road
Manchester M23 9LT
admin@aspergillus.org.uk
12. Stem cell latest
Easy stem cells!!
Paper published in Nature is possibly one of the most
important developments in stem cells for 20 years
http://www.bbc.co.uk/news/science-environment25967136
13. Stem cell latest
Warning:
Other labs are finding it difficult to replicate these results
There might be more to it – not as easy as first thought
14. Power of placebo
http://www.bbc.co.uk/programmes/b03wcchn/clips
Placebos work due the power of our expectations. Here are some of the
surprising things that a placebo can do. Even the size and shape of the pill can
make a difference.
Placebos could not act as an antifungal and fight infection, but they can help
relieve pain, anxiety, stress, nausea and much more!
Insulting? Implies we are in control of some of our symptoms? Some studies
suggest that isn’t the case & a placebo reaches something deeply engrained in
us that has real physical effects. Scientists want to harness this power.
15. Help us regulate damp industry
Change.org – look for petition to Eric Pickles for
better regulation of the damp surveying industry in
the UK & sign – many thanks!
http://www.change.org/en-GB/petitions/eric-
pickles-better-regulation-of-the-damp-surveyingindustry?
share_id=KWkZcfgEaK&utm_campaign=share_but
ton_action_box&utm_medium=facebook&utm_sou
rce=share_petition
16. Suggest a subject
Can be on any relevant subject you would like to hear
our opinion or get our help with
Send suggestions to admin@aspergillus.org.uk
Pass notes to me at clinic or at the meeting
Phone them in (24 hrs) at 0161 291 5866
17. Other advances
Stem cells proving to have the ability to help cure Tb!
(this was a surprise result – the experiment was only
intended to test for safety)
A group found that when they gave patients back their own
stem cells (patients who had infections that were resistant to
multiple drugs), three times as many as controls were cured
after 6 months!
Itraconazole may be useful to treat prostatic cancers!
18. Other news
Periodical for clinic is in development
An ‘expanded newsletter’ with news, information,
art, poetry. Probably do 4 editions.
Ideas welcome!
19. Thank You
“The best chance we have of beating this illness is to
work together”
Living with it, Working with it, Treating it
Fungal Infection Trust