offline patients quarterly newsletter
DESCRIPTION
A discussion to collect ideas and discuss the forthcoming new handout for the purpose of communicating our support with patients who do not use computersTRANSCRIPT
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LED BY GRAHAM ATHERTONSUPPORTED BY
NAC CENTRE MANAGER CHRIS HARRIS
PATIENTS QUARTERLY NEWSLETTER
NATIONAL ASPERGILLOSIS CENTREUHSM
MANCHESTER
Support Meeting for Aspergillosis Patients &
Carers
Fungal Research Trust
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Programme
1.30 Graham Quarterly Newsletter
2.00 Tea & Coffee2.30 Discussions?
3.00 Hot topics Q & A from the floor or online
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Monthly Newsletter
Offline support – nearly 50% of patients can only access help & support offline
Quick read, promotes support groups (online & offline)
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Quarterly Newsletter
Identified a need for better offline community building
Need a way to provide more information Promote more widespread support of patients
& carers
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Quarterly Newsletter
Offline community buildingPhone network manned by patient/carersContent from the community, for the
communityQ & ARecipes/poetryOther meetings?
Different parts of UK ??
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Quarterly Newsletter
Some content will be permanent referencePhone number(s) of network organiserOther contact number for services
Some one quarter only? (factual articles)Some to be repeated annually? (Poems, Recipe, art)
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Quarterly Newsletter
Something to pick up and read in clinic or take with you
Attractive Entertaining Useful Supportive
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Quarterly Newsletter
Design the newsletter
Size – which is best?• A4• A5
How many pages?• 4• 8• 16
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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?
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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
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Stem cell latest
The story continues to develop
Next stage – get them working!
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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-environment-25967136
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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
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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.
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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-surveying-industry?share_id=KWkZcfgEaK&utm_campaign=share_button_action_box&utm_medium=facebook&utm_source=share_petition
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Suggest a subject
Can be on any relevant subject you would like to hear our opinion or get our help with
Send suggestions to [email protected] notes to me at clinic or at the meetingPhone them in (24 hrs) at 0161 291 5866
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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!
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Other news
Periodical for clinic is in developmentAn ‘expanded newsletter’ with news,
information, art, poetry. Probably do 4 editions.
Ideas welcome!
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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