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Aspergillosis Patients Support Outreach Meeting Edinburgh October 2010 Discussion - Graham Atherton
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Aspergillosis Patients Support Outreach Meeting Edinburgh October 2010 Discussion - Graham Atherton

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A discussion of the problems remote users of the National Aspergillosis Centre may face and what we are doing about the challenges

A discussion of the problems remote users of the National Aspergillosis Centre may face and what we are doing about the challenges


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  • 1. Aspergillosis Patients Meeting3rd October 2010Edinburgh
    “Advice, information and mutual support”
  • 2. www.aspergillus.org.uk/newpatients
    NAC Patient Support
    To support the health of patients nationally
    Difficulties:
    One central location
    Access for people in remote locations
    Medication
    Social needs
    Information needs
  • 3. www.aspergillus.org.uk/newpatients
    NAC Patient Support
    People in remote locations – what are the problems?
    Getting information out there
    Updating information
    Social support
    Clinical support (Out of hours)
    Clinical support - medications
  • 4. www.aspergillus.org.uk/newpatients
    NAC Patient Support
    Resources:
    Leaflets
    Website
    Online Support Group
    Phone support (Nurses)
    Limitations:
    Many people do not use PC every day/every week or don’t have one
    Phone support office hours only
  • 5. www.aspergillus.org.uk/newpatients
    NAC Patient Support
    Leaflets
    Available at every clinic
    Available on website
    What other subjects can we cover?
    Website
    Always on, always up to date
    What else can we add to patients website?
  • 6. www.aspergillus.org.uk/newpatients
    NAC Patient Support
    Social support
    Email support >800 members
    Patient support meeting
    Live internet access (text comments)
    Recorded talks
    Not online
    Local groups?
    Local patient meetings?
  • 7. www.aspergillus.org.uk/newpatients
    NAC Patient Support
    Out of hours
    Email support group
    Treatment card for A & E
    What else?
    Keeping up to date
    Newsletters in clinic
    Text messages
    Twitter
    Custom announcements
  • 8. www.aspergillus.org.uk/newpatients
    NAC Patient Support
    Videoconferencing
    Patients meeting
    Specialised meetings & talks (Livestream/Skype)
    Offline
    Phone conferencing
    Post
  • 9. www.aspergillus.org.uk/newpatients
    NAC Patient Support
    Would you like more meetings in Scotland? How often?
    Why? Social/informative or both?
    Would phone conferencing be a good idea?
    Would internet conferencing (text only) be a good idea? This could be accommodated in our current patients meeting.
    Twitter/texting as a method of disseminating news & meetings (how many have mobile/text?)
  • 10. www.aspergillus.org.uk/newpatients
    NAC Patient Support
    Day to day practical information
    Travel insurance
    Travel precautions
    Flying with oxygen
    Keeping pets
    Gardening
    A & E information
    What else??
  • 11. www.aspergillus.org.uk/newpatients
    NAC Patient Support
    Good News
    This was a request from patients at the first meeting – we now produce a blog and use as many good news stories as we can find! http://www.aspergillusblog.blogspot.com/
  • 12. www.aspergillus.org.uk/newpatients
    NAC Patient Support
    What you can do for us
    Feedback suggestions & complaints – we can’t improve until you let us know how!
    Fundraising for Fungal Research Trust (Research & Patient Support)
    Donations can be made using credit or debit cards at http://www.aspergillus.org.uk/newpatients/donations.php
    This is the preferred way to donate personally (cheapest for us) & we will soon be reclaiming tax

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