offline patients quarterly newsletter

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

Programme

1.30 Graham Quarterly Newsletter

2.00 Tea & Coffee2.30 Discussions?

3.00 Hot topics Q & A from the floor or online

Monthly Newsletter

Offline support – nearly 50% of patients can only access help & support offline

Quick read, promotes support groups (online & offline)

Quarterly Newsletter

Identified a need for better offline community building

Need a way to provide more information Promote more widespread support of patients

& carers

Quarterly Newsletter

Offline community buildingPhone network manned by patient/carersContent from the community, for the

communityQ & ARecipes/poetryOther meetings?

Different parts of UK ??

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)

Quarterly Newsletter

Something to pick up and read in clinic or take with you

Attractive Entertaining Useful Supportive

Quarterly Newsletter

Design the newsletter

Size – which is best?• A4• A5

How many pages?• 4• 8• 16

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?

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

Stem cell latest

The story continues to develop

Next stage – get them working!

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

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

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.

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

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.ukPass notes to me at clinic or at the meetingPhone them in (24 hrs) at 0161 291 5866

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!

Other news

Periodical for clinic is in developmentAn ‘expanded newsletter’ with news,

information, art, poetry. Probably do 4 editions.

Ideas welcome!

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