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Aspergillosis Patients Meeting3rd October 2010Edinburgh “Advice, information and mutual support”
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
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
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
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?
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?
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
www.aspergillus.org.uk/newpatients NAC Patient Support Videoconferencing Patients meeting Specialised meetings & talks (Livestream/Skype) Offline Phone conferencing Post
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?)
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??
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/
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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Aspergillosis Patients Support Outreach Meeting Edinburgh October 2010 Discussion - Graham Atherton

  • 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