Offline Patients Quarterly Newsletter

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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

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Offline Patients Quarterly Newsletter

  1. 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. 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. 3. Monthly Newsletter Offline support – nearly 50% of patients can only access help & support offline Quick read, promotes support groups (online & offline)
  4. 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. 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. 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. 7. Quarterly Newsletter Something to pick up and read in clinic or take with you     Attractive Entertaining Useful Supportive
  8. 8. Quarterly Newsletter Design the newsletter Size – which is best? • A4 • A5 How many pages? • 4 • 8 • 16
  9. 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. 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. 11. Stem cell latest The story continues to develop Next stage – get them working!
  12. 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. 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. 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. 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. 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. 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. 18. Other news Periodical for clinic is in development An ‘expanded newsletter’ with news, information, art, poetry. Probably do 4 editions. Ideas welcome!
  19. 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

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