Respiratory Nurses of the Year 2011 final

Aspergillosis Patient Meeting (Actual and Virtual) Nursing Times Respiratory Nurses of the Year Awards 22 nd September 2011

Why are we here?
We want to share our Passion
for
Actual and Virtual Patient Support Meetings
to
Inspire others
to
Make A Difference to their Patients

Six-Wise Men
Who?
What?
Where?
When?
Why?
How?
Aspergillosis Patient Meetings (Actual and Virtual) http://www.aspergillus.org.uk/newpatients/

Who are we?
“ Passionate about Aspergillosis Patients”
Make a difference
“ Wear our hearts on our sleeves”
Proud to wear our uniforms
“ We listen to our patients and hear what they say”
Its for them; Its about them; Its because of them!
Aspergillosis Specialist Nurses
Debbie Kennedy MPHe BSc DipHE RMN RGN
Georgina Powell MSc DipHE RN
Specialist Clinical Research Nurse
Marie Kirwan MSc BSc (HONS) DPSN RGN

What do we do?
We Give Our Patients -
Faith
Hope
Charity

How do we do it?
The South Manchester Way
Patient Care is at our heart
We strive for excellence
We lead, learn and inspire
We are honest and open
We are one talented team

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

NAC launched in 2009
Commissioned by the Department of Health
Provide long term care for patients with Aspergillosis
Includes several respiratory conditions caused by airborne fungus Aspergillus
Expertise in Aspergillosis
Sophisticated unique diagnostic testing
High quality clinical care
Out-reach and In-reach
National Aspergillosis Centre (NAC) http://www.aspergillus.org.uk/newpatients/

2009 NAC Launch
NAC May 2009
Incorporated a Patient Meeting
Positively evaluated
Patients requested further regular meeting
Responsive to the needs of the patients
Ideas for talks and fundraising from patients and carers

What is Aspergillosis?
Aspergillus spores are inhaled by people
Immune system destroys the spores and no infection arises.
BUT
Individual’s with a weakened immune system or a pre-existing medical condition are predisposed to Aspergillus infection
Aspergillus spores grow inside a lung or a wound
Infection caused by aspergillus is termed aspergillosis
http://www.aspergillus.org.uk/newpatients/

Sources of Aspergillus spores
Smoking Marijuana
Bedside humidifiers
Animal stables
Hay
Mulch
Rotten plants,
Compost piles,
Wood chips
Construction sites
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.

Aspergillus Life Cycle Spores inhaled Germination Hyphae branching Mass of Hyphae

Dedicated Patient Website

Aspergillosis for Patients Meeting, Rome, Feb 3rd, 2010
Edinburgh Botanic Gardens 3 rd October 2010
Fungal Research Trust & Meeting for Aspergillosis Patient Meeting, London June 18 th 2011
North East planned 2012
Midlands planned 2012
Patient’s homes!
Where are they?

Meeting Structure
Afternoon 1pm – 3pm
Streamed Live on Internet (Real-time chat facility)
Recorded
Two-parts
Formal Talk
Coffee Break and Biscuits (Charity)
Open Session
Information
Education
Peer Support
Shared patient Experiences
Informal Platform to ask Questions
Opportunity to ask Clinically relevant questions

After the Meeting Structure http://www.aspergillus.org.uk/newpatients/
Patient Monthly Newsletter
Emailed; Posted on Website; Handed-out at clinics
Recording posted on dedicated Patient Website
Register and Audit of attendance (averages per month)
Actual 25-35
Virtual 18-30
Follow-up viewings 50-60

Patient Focussed Talks http://www.aspergillus.org.uk/newpatients/
Aspergillus Research and Patient Involvement
Quality of Life assessment
Sources of Aspergillus & cleaning it up
Antifungal drugs
Breathing techniques & exercise
The virtual clinic
Diet guidelines
Aspergillosis research
Computers in Aspergillus research
The Expert Patient Programme
Embolisation

Patient Ideas
Fundraising
Patient Cookery Book – FUNGuIde To Cooking
Badge Pin
Name the Giant Teddy Bear – Nik-NAC
Calendar
Future

Nurses Ideas
Disseminate widely as possible the value of providing virtual patient meetings so other professionals will be similarly inspired and encouraged.
Publicise locally, regionally, nationally and internationally
Present at the Association of Respiratory Nurse Specialist (ARNS) annual conference in 2012
Value the opportunity of writing an article for the Nursing Times
Welcome visitors to UHSM to meet with the NAC team and attend a support group meeting
Present our findings at the Advances Against Aspergillosis conference in 2012.
Future http://www.aspergillus.org.uk/newpatients/

Thank You Short-Listing Us and Giving us the opportunity to tell our story! http://www.aspergillus.org.uk/newpatients/

Respiratory Nurses of the Year 2011 final

by Graham Atherton on Sep 28, 2011

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Respiratory Nurses of the Year 2011 final — Webinar Transcript