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

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

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

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

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?

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?

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

NAC Patient Support
Videoconferencing
Patients meeting
Specialised meetings & talks (Livestream/Skype)
Offline
Phone conferencing
Post

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?)

NAC Patient Support
Day to day practical information
Travel insurance
Travel precautions
Flying with oxygen
Keeping pets
Gardening
A & E information
What else??

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/

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

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

by Graham Atherton on Jul 29, 2011

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