Welcome to the Parkinson Information Network Hosted by the World Parkinson Coalition.

1. Welcome to the Parkinson Information Network Hosted by the World Parkinson Coalition.

2. World Parkinson Congress 2013 October 1 – 4, 2013 Montreal, Canada

3. Ways your organization can get involved: • Hold competitions in your community for scholarships for your members and supporters to attend the WPC. • Add details about the WPC 2013 to your newsletter. WPC can supply hi-resolution graphics in a size that works for you. • Find a way to send a delegation from our organization. • Add the Parkinson’s Pledge link to your website. www.parkinsonspledge.org

4. 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

5. 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

6. Get it on time

7. Campaign background

8. 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

9. 5 campaign asks • 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 • Hospital and care home staff to listen to people with Parkinson’s, their carers and families • Hospital pharmacists to make sure they always stock a broad range of Parkinson’s medications • 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

10. Resources then and now

11. Resources then • Ideas for action for healthcare professionals • ‘Sticker’ • Post it notes • Newsletter

12. Resources now • Ward pack • Patient opinion • Medicines management audit • Education DVDs • Drug chart (pending) • Education session’s

13. Patient resource’s • The branded wash bag: • Relieves anxiety • Serves as a visual cue • Provides information

14. Understanding patient needs and current practices

15. Patient Opinion • Patientopinion.org.uk • Allows people to share their stories • Allows the trust to respond • Allows people to stay anonymous • Paper form available

16. 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.”

17. 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

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

19. Campaign impact

20. 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

21. Moving forward

22. 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

23. We’re the Parkinson’ssupport and research charity.We’re committed to findinga cure and improving lifefor everyone affected by Parkinson’s

24. Thank you Steve and Parkinson’s UK! Questions & Answers

25. Get It On Time

26. 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 medications2) The development of a Parkinson’s Passport Parkinson’s disease (PD) Medication Protocol Program (PDMPP) was piloted, funded by Parkinson’s NSW

27. 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

28. 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.

29. 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.

30. 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

31. Recommendation to inform: Directors of Pharmacy Pharmacy Staff Directors of Nursing Nursing Staff Drug and Therapeutic Committees Medical Staff

32. Suggested action by Local Districts/Networks • Distribute the Safety Notice to all relevant clinical staff • Ensure staff take all necessary action to ensure medications are provided on time • Ensure patient care plans for all patients with PD assess medication timing and availability • Ensure Drug & Therapeutic Committees review self medication strategies consistent with policy

33. Supported by Parkinson’s NSW and National Prescribing Service Parkinson's Passport

34. 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

35. 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.

36. 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”

37. Thank you Miriam and Parkinson’s NSW! Questions & Answers

38. WPC Parkinson Information Network June 28, 2012 Barbara Snelgrove National Director, Education & Services barbara.snelgrove@parkinson.ca

39. 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

40. 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

41. 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

42. 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

43. 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)

44. 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

45. ‘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

46. 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

47. 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

48. 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

49. 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

50. 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