Download Get It On Time Campaign slides

Welcome to the Parkinson
Information Network
Hosted by the World Parkinson Coalition.
World Parkinson Congress 2013
October 1 – 4, 2013
Montreal, Canada
Ways your organization can get involved:
1.Hold competitions in your community for scholarships for your members and
supporters to attend the WPC.
2.Add details about the WPC 2013 to your newsletter. WPC can supply hi-resolution
graphics in a size that works for you.
3.Find a way to send a delegation from our organization.
4.Add the Parkinson’s Pledge link to your website. www.parkinsonspledge.org
Key dates for the WPC 2013
•Video submission opens – November 5, 2012
•Abstract site opens – December 3, 2012
•Registration opens – January 2, 2013
•Abstract site closes – April 2013
•Video submission closes – May 8, 2013
•Early-bird registration closes – July 1, 2013
Welcome Remarks – Robin Elliott
Panelists:
-Steve Ford, Chief Executive at Parkinson’s UK
-Miriam Dixon, CEO at Parkinson’s NSW, Australia
-Barbara Snelgrove, Director, Education and Support Services
at Parkinson Society Canada
-Joyce Oberdorf, CEO at National Parkinson Foundation
History
•Launched during Parkinson’s Awareness Week April 2006
•Created through the stories of people affected by Parkinson’s
•Call to action: To stop their condition getting out of control, people
with Parkinson’s need their medication on time – every time
5 campaign asks
1) All staff working in hospitals and care homes
to have a better understanding of Parkinson’s
and why the timing of drugs is so crucial
2) Hospital and care home staff to listen to
people with Parkinson’s, their carers and
families
3) Hospital pharmacists to make sure they
always stock a broad range of Parkinson’s
medications
4)
5)
People with Parkinson’s to have the option to control
their own medication (self-medicate), if they are able
People with Parkinson’s to have their medication on
time
Resources then
•Ideas for action for healthcare professionals
•‘Sticker’
•Post it notes
•Newsletter
Resources now
• Ward pack
• Patient opinion
• Medicines management
audit
• Education DVDs
• Drug chart (pending)
• Education session’s
Patient resource’s
The branded wash bag:
•Relieves anxiety
•Serves as a visual cue
•Provides information
Patient Opinion
• Patientopinion.org.uk
• Allows people to share
their stories
• Allows the trust to respond
• Allows people to stay
anonymous
• Paper form available
Patient Opinion: examples
“Whilst I was in the University
Hospital Coventry, I got my
Parkinson’s medication
sometimes on time. I felt that
staff did not understand the
importance of Parkinson’s
medication at all.”
“We have raised the issue at
our departmental meeting and
have reiterated to the medical
teams the importance of
medication checks to be
undertaken daily. We apologise
for any stress or discomfort that
this experience caused you.”
Medicines Management audit
• Self audit of practices and procedures (60 to
date)
• Benchmark of current practice
• Great way of engaging with hospital
pharmacists
• Can be downloaded from:
http://www.parkinsons.org.uk/giotaudit
Drug chart
Design of in-patient drug chart for Parkinson’s as part of Department of
Health work
Impact
• Scotland petition
• CEQUIN payment
• Whole systems change – Peterborough
• Chief Pharmacist (Department of Health)
• Partnership with Royal Society of
Pharmacists – ‘Transfer of Care’ pilot
• Recognition of ‘GIOT’ amongst health
professionals
Moving forward
• Benchmark current situation:
• Survey people affected
• Survey Parkinson’s Nurses
• Survey hospital staff
• Develop/revamp resources accordingly
• New steering group membership:
• People affected by Parkinson’s
• Parkinson Nurse Specialists
• General Nurses
• Pharmacists
Thank you Steve and Parkinson’s UK!
Questions & Answers
Two Successful initiatives of Parkinson’s NSW related to the UK initiative
“Get It On Time”
1) Ministry of Health Safety Notice for the Management of
medications
2) The development of a Parkinson’s Passport
Parkinson’s disease (PD) Medication Protocol Program
(PDMPP) was piloted, funded by Parkinson’s NSW
The Study highlighted continuing concerns about inadequate nurse
education.
Main concerns raised:
•
In most hospitals patients not permitted to self-medicate, yet administration
of PD medicines is often poorly timed
•
Limited time period for taking PD medicines in order to ameliorate
symptoms and to minimise risk of falls and injury
•
Need for flexible protocols for PD medicine management that are
responsive to individual needs in in all health settings
Get it on time campaign became main theme of National Awareness week in
September 2006. Kits sent to Directors of Nursing throughout Australia
The campaign raised awareness but did not substantially change practice.
Persistent lobbying resulted in the following initiative:
Issued for the first time ever a Safety Notice by Clinical Safety, Quality and
Governance of NSW Ministry of Health
It is based on the evidence that patients with PD have
their neurological stability finely maintained and that
this balance is challenged if medication administration
is delayed.
•
Administer from the patient’s own medicine supply until locally available (hospital supply)
•
Document the time medications are normally taken by the patient similar to treatment for patients
with insulin dependent diabetes; AND give doses on time without fail
•
Assess patient’s ability to self-medicate
•
Avoid interacting drugs
•
Obtain a clear and accurate medical history
•
Review the range of medications available in Ed and after hours cupboards
•
Notify patient’s neurologist or specialist nurse of each patient’s admission where possible
•
Ensure patient care plan and clinical handover include details of doses to be administered and
timing
Recommendation to inform:
Directors of
Pharmacy
Directors of Nursing
Drug and Therapeutic
Committees
Pharmacy Staff
Nursing Staff
Medical Staff
Suggested action by Local Districts/Networks
1.
Distribute the Safety Notice to all relevant clinical staff
2.
Ensure staff take all necessary action to ensure medications are
provided on time
3.
Ensure patient care plans for all patients with PD assess medication
timing and availability
4.
Ensure Drug & Therapeutic Committees review self medication
strategies consistent with policy
Supported by Parkinson’s NSW and National Prescribing Service
The purpose of this passport is:
•
For the PWP and their carer:
- to empower them in recognition of their
personal knowledge of PD
•
For Health professionals:
- to supplement their knowledge of PD
- to assist with the management of the individual PWP
•
This passport, which you will keep with you at all times, aims to provide you
with a comprehensive account of your condition, your symptoms and
current medications.
•
Your cooperation in keeping the passport up to date and carrying it with you
will assist in its widespread recognition as a valuable tool.
•
You should go through the passport with your GP regularly and with the
neurologist at least once a year so he/she is aware of any changing
symptoms and to keep it updated.
The passport includes the following checklist:
• “Motor symptoms may include”
• “Autonomic symptoms may include”
• “Cognitive Symptoms may include”
• “More non-motor symptoms”
• “My other PD Symptoms”
• “My past medical history”
Thank you Miriam and Parkinson’s NSW!
Questions & Answers
WPC Parkinson
Information Network
June 28, 2012
Barbara Snelgrove
National Director, Education &
Services
[email protected]
Get it on Time/Le prends à
temps
• Goals of the session:
– Why the need ?
– What is the project ?
– How to implement ?
– Challenges and Solutions
Why the need
PWP in care facilities and hospital
emergency wards were not getting meds on
time
Caused serious consequences and put
PWP at risk
Staff were not aware of importance of PWP
getting their meds ON TIME … EVERY
TIME
Why the need … pilot
• 40 in-services in care facilities
• “test” Get it on Time material (GIOT)
• 132 workers completed mini-survey:
– 73% said they were unaware of the
importance of PWP getting their meds on time
– 96% said they could use GIOT information
in their work, to ensure meds are given on
time
What is project ?
• Based on Parkinson’s UK
• Feedback across Canada about personal
experiences
• Told from the “voice” of PWP and care
partners
• English : Get it on Time
• French : Le prends à temps
Goals of the project
• Staff …better understanding of PD and
why timing of drugs is so crucial
• …listen to PWP, care partners as experts
in managing the disease
• Hospitals/facilities to stock a range of
meds
• PWP to have the option to self-medicate (if
able to do so)
What is the project ?
• Folder
• Education pamphlet:
– What is PD?
– Parkinson’s and medication
– Why meds on time is important
– What staff can do
– What PWP can do
• Posters; post its
‘Get it on time’ Action Steps
• Place a ‘get it on time’ sticker on the
person’s file to remind staff
• Tell colleagues how important medication
timing is
• Pill timers/alarms for staff and client
• Consider self-administration of meds for
PWP
How to implement ?
• Promo stage – two-page promo card to
contact PS for more information
• Inservice Stage:
– Standardized GIOT ppt for staff
– Online DVD available at cno.parkinson.ca
– Reference card on PD symptoms and meds
for staff
• Evaluation and follow up
Grassroots implementation
• Pilots in several regions across Canada:
– Central/Northern Ontario
– Saskatchewan through Health Authority
– Quebec-province wide in 2013 francophone
– Partnerships:
• MDC nurse in hospital in Quebec
• MDC nurse delivering in-services in Manitoba
• Train the Trainer delivery model in Maritimes
– Director of Care for chain of nursing homes
Challenges to implementation
• Health care delivery provided by 10
provinces: no national standard
• PSC resources vary (human and $$)
• Takes time to engage facilities;
– Works best if there is a “champion” on staff
• Difficult to get in to hospital settings
– Focus on community delivery
Overcoming Challenges:
Supportive legislation to selfmedicate
• 31 (6) “Where a resident of the home is permitted to administer a
drug to himself or herself under subsection (5) the licensee shall
ensure that there are written policies to ensure that residents who
do so understand
• (a) the use of the drug
• (b) the need for the drug
• (c) the need for monitoring and documentation of the use of
the drug
• (d) the necessity for safekeeping of the drug by the resident
where the resident is permitted to keep the drug on his or her
person or in his or her room under subsection (7)”
•
Ontario Long-term Care Act
Overcoming challenges:
Education
• Benefits
–
–
–
–
PWP are experts in their own condition
Helps maintain independence
Saves staff time
Self-respect and dignity of PWP
• Particularly valuable when avoiding gaps upon
admittance, when waiting for appointments
• Medications should not be taken from PWP
without an individualized care plan to ensure
their delivery
Overcoming Challenges:
Personal Advocacy
• Hospital Stay Kit:
– Admission protocol
ensure quality care
– A self-advocacy
brochure; tips on
communicating with
hcp’s
– Letter written from the
perspective of PWP
www.cno.parkinson.ca
Overcoming challenges:
standardized med card
Overcoming challenges
• Seeking sponsorship funding both
nationally and regionally to expand pilots
• Continue support from regional partners to
expand the program
Final words
• Thank you for this program; the staff didn’t
understand how I could be fine one minute
and not be able to move the next. They
didn’t make the link that I needed my
Parkinson’s drugs.
Raymond, 70, person with Parkinson’s
Acknowledgement
‘Get it on time’ is a national program
of Parkinson Society Canada
Based on a design and text created
by Parkinson’s UK
www.parkinson.ca
1.800.565.3000
Thank you Barbara and Parkinson Society
Canada!
Questions & Answers
WPC Parkinson Information
Network Panel
National Parkinson Foundation
June 28, 2012
Aware in Care Campaign
Aim: To help people with Parkinson’s and their families
get the best care possible during a hospital stay
• Target Audience
– People with Parkinson’s and Care Partners (phase 1)
– Hospital-Based Health Care Professionals (phase 2)
58
Action Plan: Hospitalization and PD (Phase 1)
Research
Empower
Disseminate
Convene Steering
Committee; Conduct
literature review and
survey
Create patient and family
empowerment materials
for US healthcare system
environment
Promote via NPF’s
Centers & Chapters, PR
campaign, social media,
website, newsletter
Patient and families
educate hospital staff
Over 7,500 kits
distributed before
launch
Publish scholarly articles
*HELPLINE*
59
Medications
Anti-Parkinson medications are as necessary to a
Parkinson’s patient as insulin is to a diabetic.
“Often, PD medication schedules are changed in the hospital.... This change may result in
greater risk for disability and consequently an increased risk of accidents and other
complications. The acute discontinuation of PD medications... can be life-threatening.”
MJ Aminoff*, et al., Management of the hospitalized patient with Parkinson’s disease:
Current state of the field and need for guidelines. Parkinsonism and Related Disorders. 2011.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3070297/?tool=pubmed
* In 2011 Michael Aminoff, MD, was Chairman of the American
Board of Psychiatry and Neurology.
“Education of hospital staff and clinicians regarding management of PD, complications of
PD, and medications to avoid in PD is critical. ”
K Chou, et al., Hospitalization in Parkinson disease: A survey of National Parkinson
Foundation Centers. Parkinsonism and Related Disorders. 2011.
http://www.ncbi.nlm.nih.gov/pubmed/21458353
60
Changing Outcomes: Two Key Steps
• The right medications
• Medications on time
61
Helping Patients to Get Better Care
62
Key Messaging in Aware in Care
• Know the common medications that are safe—and those to avoid
• Make sure the hospital brings Parkinson’s medications
on time, every time
• Share your list of medications and if you’ve had DBS
• Tell every member of your care team that you have Parkinson’s –
and tell them what that means and what are your needs
• Most Important…Pack your Aware in Care kit and bring it with you
for all hospital stays and to annual appointments
63
Education Platform
• Patients and families must educate hospital
staff
• Awareincare.org
–
–
–
–
Cites of scholarly publications
Educational Powerpoint to support group talks
Discussion Guide for support groups to engage in issue
Poster, flyer, postcards for Chapters and Medical Centers
• Webinar and Discussion Guide
Hospitalization: An Action Plan to be Aware in Care
• Parkinson Report
Newsletter spotlights campaign
64
Hospitalization Kits
65
Lessons Learned
• Hospitalization Kit
– United States and United Kingdom health systems are
different
– It’s more than a kit – it’s an education platform,
awareness campaign
– Empowered patients to “Speak up!”
– 10,000 kits were not enough
– Given high demand, a responsive printing and
distribution partner was critical for success
• Kit Items
– People want the kit, not downloaded materials
– Some kit items are more useful – medical alert cards,
contraindicated medications list
66
Lessons Learned
• HELPLINE
– Best method for distribution
• Confirm contact information
• Engagement opportunity to determine other needs
• Manage expectations/decrease service issues
• Chapters/Centers
• E-store
– Need to establish order limits, identify repeat customers and
create usable reports
67
Next Steps: Advocacy (Phase II)
• Professionals
– Design a simple, scalable checklist model for in-hospital
Parkinson’s management, focusing on: 1) getting patients
the right medications and 2) ensuring medications on
time
• Patients
– NPF volunteer advocates visit local hospitals to raise awareness
of the special needs of people with Parkinson’s during
hospitalization
68
Contact Information
Joyce Oberdorf
President & CEO
[email protected]
(305) 243-5813
Melanie Smith
Director, Education Programs
[email protected]
(305) 243-5788
69
Thank you Joyce and the National
Parkinson Foundation!
Questions & Answers
Thank you for joining the talk.
A taped version will be posted on the
WPC website on Monday, July 2.