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

2. Programme
 1.30 Graham

Quarterly Newsletter
 2.00 Tea & Coffee
 2.30 Discussions?
 3.00 Hot topics

Q & A from the floor or online

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)

7. Quarterly Newsletter
Something to pick up and read in clinic or take with
you




Attractive
Entertaining
Useful
Supportive

8. Quarterly Newsletter
Design the newsletter
Size – which is best?
• A4
• A5
How many pages?
• 4
• 8
• 16

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

11. Stem cell latest
The story continues to develop
Next stage – get them working!

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