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

Get it on time

Campaign background

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 asks1) 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) People with Parkinson’s to have the option to control their own medication (self-medicate), if they are able

5) People with Parkinson’s to have their medication on time

Resources then and now

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

Understanding patient needs and current practices

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 chartDesign of in-patient drug chart for Parkinson’s as part of Department of Health work

Campaign impact

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

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

We’re the Parkinson’ssupport and research charity.

We’re committed to findinga cure and improving lifefor everyone affected by Parkinson’s

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 nurseeducation.

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 inSeptember 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 andGovernance 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:

Drug and Therapeutic Committees

Directors of Nursing

Directors ofPharmacy 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 youwith 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 SnelgroveNational Director, Education & Servicesbarbara.snelgrove@parkinson.ca

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 timeCaused serious consequences and put PWP at riskStaff 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

– Empowering for PWP– Staff are encouraged to contact Parkinson

Society for more education

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 self-medicate• 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

‘Get it on time’ is a national programof Parkinson Society Canada

Based on a design and text createdby Parkinson’s UK

www.parkinson.ca1.800.565.3000

Acknowledgement

Thank you Barbara and Parkinson Society Canada!

Questions & Answers

WPC Parkinson Information Network Panel National Parkinson FoundationJune 28, 2012

Aware in Care CampaignAim: 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)

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Research

Convene Steering Committee; Conduct literature review and

survey

Publish scholarly articles

Empower

Create patient and family empowerment materials for US healthcare system

environment

Patient and families educate hospital staff

Disseminate

Promote via NPF’s Centers & Chapters, PR campaign, social media,

website, newsletter

Over 7,500 kits distributed before

launch *HELPLINE*

Action Plan: Hospitalization and PD (Phase 1)

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Medications

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Anti-Parkinson medications are as necessary to a Parkinson’s patient as insulin is to a diabetic.

“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

“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.

Changing Outcomes: Two Key Steps

• The right medications• Medications on time

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Helping Patients to Get Better Care

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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

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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

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Hospitalization Kits

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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

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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

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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

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Contact Information

Joyce OberdorfPresident & CEO joberdorf@parkinson.org(305) 243-5813

Melanie SmithDirector, Education Programsmsmith@parkinson.org(305) 243-5788 

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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.

www.worldpdcongress.org