Aspergillosis Patient Meeting   (Actual and Virtual) Nursing Times Respiratory Nurses of the Year Awards 22 nd  September ...
Why are we here? <ul><li>We want to share our Passion  </li></ul><ul><li>for  </li></ul><ul><li>Actual and Virtual Patient...
<ul><li>Six-Wise Men </li></ul><ul><ul><ul><li>Who? </li></ul></ul></ul><ul><ul><ul><li>What?  </li></ul></ul></ul><ul><ul...
Who are we? <ul><li>“ Passionate about Aspergillosis Patients” </li></ul><ul><ul><li>Make a difference </li></ul></ul><ul>...
What do we do? <ul><li>We Give Our Patients  - </li></ul><ul><ul><ul><ul><ul><li>Faith </li></ul></ul></ul></ul></ul><ul><...
How do we do it? <ul><ul><ul><ul><li>The South Manchester Way </li></ul></ul></ul></ul><ul><ul><ul><ul><ul><li>Patient Car...
National Aspergillosis Team   http://www.aspergillus.org.uk/newpatients/ Director Professor David Denning Mycology Referen...
<ul><li>NAC launched in 2009 </li></ul><ul><li>Commissioned  by the Department of Health </li></ul><ul><li>Provide long te...
2009 NAC Launch <ul><li>NAC May 2009 </li></ul><ul><li>Incorporated a Patient Meeting </li></ul><ul><li>Positively evaluat...
What is Aspergillosis?  <ul><li>Aspergillus spores are inhaled by people </li></ul><ul><li>Immune system destroys the spor...
Sources of Aspergillus  spores <ul><li>Smoking  Marijuana </li></ul><ul><li>Bedside humidifiers  </li></ul><ul><li>Animal ...
Aspergillus Life Cycle Spores inhaled Germination Hyphae branching Mass of Hyphae
Dedicated   Patient Website
<ul><li>Aspergillosis for Patients Meeting, Rome, Feb 3rd, 2010  </li></ul><ul><li>Edinburgh Botanic Gardens 3 rd  October...
Meeting Structure  <ul><li>Afternoon 1pm – 3pm </li></ul><ul><li>Streamed Live on Internet (Real-time chat facility) </li>...
After the Meeting Structure  http://www.aspergillus.org.uk/newpatients/ <ul><li>Patient Monthly Newsletter </li></ul><ul><...
Patient Focussed Talks  http://www.aspergillus.org.uk/newpatients/ <ul><li>Aspergillus Research and Patient Involvement  <...
<ul><li>Patient Ideas </li></ul><ul><li>Fundraising   </li></ul><ul><li>Patient Cookery Book – FUNGuIde To Cooking </li></...
<ul><li>Nurses Ideas </li></ul><ul><li>Disseminate widely as possible the value of providing virtual patient meetings so o...
Thank You Short-Listing Us  and  Giving us the opportunity to tell our story! http://www.aspergillus.org.uk/newpatients/
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Respiratory Nurses of the Year 2011 final

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Extraordinary Aspergillosis Patients Support meeting September 2011.
Speaker Marie Kirwan on the entry of the Aspergillosis Patients Support team for the Nurses of the Year Award

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Respiratory Nurses of the Year 2011 final

  1. 1. Aspergillosis Patient Meeting (Actual and Virtual) Nursing Times Respiratory Nurses of the Year Awards 22 nd September 2011
  2. 2. Why are we here? <ul><li>We want to share our Passion </li></ul><ul><li>for </li></ul><ul><li>Actual and Virtual Patient Support Meetings </li></ul><ul><li>to </li></ul><ul><li>Inspire others </li></ul><ul><li>to </li></ul><ul><li>Make A Difference to their Patients </li></ul>
  3. 3. <ul><li>Six-Wise Men </li></ul><ul><ul><ul><li>Who? </li></ul></ul></ul><ul><ul><ul><li>What? </li></ul></ul></ul><ul><ul><ul><li>Where? </li></ul></ul></ul><ul><ul><ul><li>When? </li></ul></ul></ul><ul><ul><ul><li>Why? </li></ul></ul></ul><ul><ul><ul><li>How? </li></ul></ul></ul>Aspergillosis Patient Meetings (Actual and Virtual) http://www.aspergillus.org.uk/newpatients/
  4. 4. Who are we? <ul><li>“ Passionate about Aspergillosis Patients” </li></ul><ul><ul><li>Make a difference </li></ul></ul><ul><li>“ Wear our hearts on our sleeves” </li></ul><ul><ul><li>Proud to wear our uniforms </li></ul></ul><ul><li>“ We listen to our patients and hear what they say” </li></ul><ul><ul><li>Its for them; Its about them; Its because of them! </li></ul></ul><ul><li>Aspergillosis Specialist Nurses </li></ul><ul><ul><li>Debbie Kennedy MPHe BSc DipHE RMN RGN </li></ul></ul><ul><ul><li>Georgina Powell MSc DipHE RN </li></ul></ul><ul><li>Specialist Clinical Research Nurse </li></ul><ul><ul><li>Marie Kirwan MSc BSc (HONS) DPSN RGN </li></ul></ul>
  5. 5. What do we do? <ul><li>We Give Our Patients - </li></ul><ul><ul><ul><ul><ul><li>Faith </li></ul></ul></ul></ul></ul><ul><ul><ul><ul><ul><li>Hope </li></ul></ul></ul></ul></ul><ul><ul><ul><ul><ul><li>Charity </li></ul></ul></ul></ul></ul>
  6. 6. How do we do it? <ul><ul><ul><ul><li>The South Manchester Way </li></ul></ul></ul></ul><ul><ul><ul><ul><ul><li>Patient Care is at our heart </li></ul></ul></ul></ul></ul><ul><ul><ul><ul><ul><li>We strive for excellence </li></ul></ul></ul></ul></ul><ul><ul><ul><ul><ul><li>We lead, learn and inspire </li></ul></ul></ul></ul></ul><ul><ul><ul><ul><ul><li>We are honest and open </li></ul></ul></ul></ul></ul><ul><ul><ul><ul><ul><li>We are one talented team </li></ul></ul></ul></ul></ul>
  7. 7. National Aspergillosis Team http://www.aspergillus.org.uk/newpatients/ Director Professor David Denning Mycology Reference Centre Manchester, Director Professor Malcolm Richardson Consultants Professor William Hope  Dr Pippa Newton Senior Scientist Dr Caroline Moore Medical Fellows Livingstone Chishimba Nursing staff Marie Kirwan Georgina Powell Deborah Kennedy Specialist Respiratory Physiotherapist Phillip Langridge Centre Manager Chris Harris Clinical and Patient Support online Dr Graham Atherton Dr Jennifer Bartholomew Medical Support Secretary Joanne Gill Jennifer Mann PATIENTS
  8. 8. <ul><li>NAC launched in 2009 </li></ul><ul><li>Commissioned by the Department of Health </li></ul><ul><li>Provide long term care for patients with Aspergillosis </li></ul><ul><li>Includes several respiratory conditions caused by airborne fungus Aspergillus </li></ul><ul><li>Expertise in Aspergillosis </li></ul><ul><li>Sophisticated unique diagnostic testing </li></ul><ul><li>High quality clinical care </li></ul><ul><li>Out-reach and In-reach </li></ul>National Aspergillosis Centre (NAC) http://www.aspergillus.org.uk/newpatients/
  9. 9. 2009 NAC Launch <ul><li>NAC May 2009 </li></ul><ul><li>Incorporated a Patient Meeting </li></ul><ul><li>Positively evaluated </li></ul><ul><li>Patients requested further regular meeting </li></ul><ul><li>Responsive to the needs of the patients </li></ul><ul><li>Ideas for talks and fundraising from patients and carers </li></ul>
  10. 10. What is Aspergillosis? <ul><li>Aspergillus spores are inhaled by people </li></ul><ul><li>Immune system destroys the spores and no infection arises. </li></ul><ul><li>BUT   </li></ul><ul><li>Individual’s with a weakened immune system or a pre-existing medical condition are predisposed to Aspergillus infection </li></ul><ul><li>Aspergillus spores grow inside a lung or a wound </li></ul><ul><li>Infection caused by aspergillus is termed aspergillosis </li></ul>http://www.aspergillus.org.uk/newpatients/
  11. 11. Sources of Aspergillus spores <ul><li>Smoking Marijuana </li></ul><ul><li>Bedside humidifiers </li></ul><ul><li>Animal stables </li></ul><ul><li>Hay </li></ul><ul><li>Mulch </li></ul><ul><li>Rotten plants, </li></ul><ul><li>Compost piles, </li></ul><ul><li>Wood chips </li></ul><ul><li>Construction sites </li></ul>Cavling Arendrup M, Ronan O'driscoll B, Petersen E, Denning DW. (2006). Acute pulmonary aspergillosis in immunocompetent subjects after exposure to bark chippings. Scand J Infect Dis , 38(10), 945-949.
  12. 12. Aspergillus Life Cycle Spores inhaled Germination Hyphae branching Mass of Hyphae
  13. 13. Dedicated Patient Website
  14. 14. <ul><li>Aspergillosis for Patients Meeting, Rome, Feb 3rd, 2010 </li></ul><ul><li>Edinburgh Botanic Gardens 3 rd October 2010 </li></ul><ul><li>Fungal Research Trust & Meeting for Aspergillosis Patient Meeting, London June 18 th 2011 </li></ul><ul><li>North East planned 2012 </li></ul><ul><li>Midlands planned 2012 </li></ul><ul><li>Patient’s homes! </li></ul>Where are they?
  15. 15. Meeting Structure <ul><li>Afternoon 1pm – 3pm </li></ul><ul><li>Streamed Live on Internet (Real-time chat facility) </li></ul><ul><li>Recorded </li></ul><ul><li>Two-parts </li></ul><ul><ul><li>Formal Talk </li></ul></ul><ul><ul><li>Coffee Break and Biscuits (Charity) </li></ul></ul><ul><ul><li>Open Session </li></ul></ul><ul><li>Information </li></ul><ul><li>Education </li></ul><ul><li>Peer Support </li></ul><ul><li>Shared patient Experiences </li></ul><ul><li>Informal Platform to ask Questions </li></ul><ul><li>Opportunity to ask Clinically relevant questions </li></ul>
  16. 16. After the Meeting Structure http://www.aspergillus.org.uk/newpatients/ <ul><li>Patient Monthly Newsletter </li></ul><ul><li>Emailed; Posted on Website; Handed-out at clinics </li></ul><ul><li>Recording posted on dedicated Patient Website </li></ul><ul><li>Register and Audit of attendance (averages per month) </li></ul><ul><ul><li>Actual 25-35 </li></ul></ul><ul><ul><li>Virtual 18-30 </li></ul></ul><ul><ul><li>Follow-up viewings 50-60 </li></ul></ul>
  17. 17. Patient Focussed Talks http://www.aspergillus.org.uk/newpatients/ <ul><li>Aspergillus Research and Patient Involvement </li></ul><ul><li>Quality of Life assessment </li></ul><ul><li>Sources of Aspergillus & cleaning it up </li></ul><ul><li>Antifungal drugs </li></ul><ul><li>Breathing techniques & exercise </li></ul><ul><li>The virtual clinic </li></ul><ul><li>Diet guidelines </li></ul><ul><li>Aspergillosis research </li></ul><ul><li>Computers in Aspergillus research </li></ul><ul><li>The Expert Patient Programme </li></ul><ul><li>Embolisation </li></ul>
  18. 18. <ul><li>Patient Ideas </li></ul><ul><li>Fundraising </li></ul><ul><li>Patient Cookery Book – FUNGuIde To Cooking </li></ul><ul><li>Badge Pin </li></ul><ul><li>Name the Giant Teddy Bear – Nik-NAC </li></ul><ul><li>Calendar </li></ul>Future
  19. 19. <ul><li>Nurses Ideas </li></ul><ul><li>Disseminate widely as possible the value of providing virtual patient meetings so other professionals will be similarly inspired and encouraged. </li></ul><ul><li>Publicise locally, regionally, nationally and internationally </li></ul><ul><li>Present at the Association of Respiratory Nurse Specialist (ARNS) annual conference in 2012 </li></ul><ul><li>Value the opportunity of writing an article for the Nursing Times </li></ul><ul><li>Welcome visitors to UHSM to meet with the NAC team and attend a support group meeting </li></ul><ul><li>Present our findings at the Advances Against Aspergillosis conference in 2012. </li></ul>Future http://www.aspergillus.org.uk/newpatients/
  20. 20. Thank You Short-Listing Us and Giving us the opportunity to tell our story! http://www.aspergillus.org.uk/newpatients/

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