1. Parkinson’s Education Course an evaluation Jo Prince SLT BHPCT Debbie Blake PDSN BPCT

2. What is a Parkinson’s Education Course? Most Parkinson’s patients come into contact with a great variety of health and social professionals during the course of their disease. Much of the information that is given overlaps although it might be given for different reasons.

3. What is a Parkinson’s Education Course? It was felt amongst some health professionals that referrals to them were coming too late, when the underlying cause of a problem was too firmly entrenched to effect a change successfully. Prevention through early education was considered preferable.

4. Why provide and Education Course to people with Parkinson’s Disease For staff  To allow professionals to minimise repetition of the same information to new patients.  To reduce overlap between professions

5. Why provide and Education Course to people with Parkinson’s Disease For patients  To empower able patients to minimise the disabling effects of Parkinson’s Disease by explaining common themes for staying well  To understand who can help and how to access them.

6. Who might benefit from such a course?  Potential patients  Patients known to the PD specialist nurse was around 400 for the Bedford and Heartlands area.  Not all of these patients would be suitable due to complex problems, inability to attend, or memory problems.

7. Who might benefit from such a course?  Potential Patients  The pilot course was offered to 15 patients chosen for their motivation and ability to feedback about course concept and content. The first 10 who replied were accepted.

8. What were the common themes of the course  To understand the relevance of good posture.  To keep active  To eat a healthy diet and take plenty of fluids  To feel good and be in control  To know who to contact if required

9. Who should ideally be involved in delivery?  PD specialist nurse  Doctor with a special interest in PD  Dietitian  Physiotherapist  Occupational Therapist  Speech and Language Therapist  Social Worker  Local PD branch

10. Who should cover what areas? PD Specialist Nurse and doctor  What is Parkinson’s Disease?  Medication and side effects

11. Who should cover what areas? Dietitian  Managing weight loss  High calorie diets and supplements

12. Who should cover what areas? Physiotherapist  Reducing falls and getting up  Achieving and maintaining good posture  Walking safely

13. Who should cover what areas? Occupational Therapist  Aids and adaptations around the home  Relaxing tense muscles

14. Who should cover what areas? Speech and Language Therapist  Breathing for voice, volume and resonance.  Facial expression  Improving articulation & rate of speech  Controlling saliva  Managing Swallowing problems

15. Who should cover what areas? Social Worker  Benefits and services  Social functions and how to get to them The local PD Society group  Local support

16. How long should the course be?  Sessions could not exceed 2 hours.  In order to cover the content we felt necessary to have 7 education sessions.  The eighth session included partners and was a recap and social session.  This session provided an opportunity to give verbal feedback on the course.

17. Supporting Information Since the course was designed as a one off experience, it was felt that a personal portfolio of information would be required to back up each presentation. This information may be required years later, so a quality ring binder was provided with sections and colour printed documents

18. Supporting Information Cost Each professional printed their own section. Costs for the ring binders and dividers was £122.60 The cost for the pilot project was kindly met by the Bedford PCT

19. Style of presentation Education  Attendees would be seen as students or delegates rather than patients.  The Speech & Language Therapy group room at Beeden House was used for presentations  The gymnasium was used for practicals and for the “plus carer” session

20. Measuring progress of participants A questionnaire was to be given to all participants at the beginning of the course, and repeated at the end. It was hoped that this would show an increase of knowledge over the 8 weeks Unfortunately due to error it was not given until week 2 (after questions 1-3 had been covered)

21. Measuring progress of participants The questionnaire Aim: 19 questions 3 were submitted by each of the following: PDSN, PT, OT & SLT. 2 were submitted by dietetics & Social Services Unfortunately the OTs questions arrived too late to be included.

22. Measuring progress of participants. Results Note: Only 6 participants our of the 8 who actually attended completed all questions on both the pre and post questionnaire

23. Pre and Post Course Evaluation

27. General Comments on the Course On the positive side  Well thought out and planned.  Impressed by accompanying notes.  Helped in coming to terms with PD.  Sets you up for the future and gets you ready.  Excellent lecturers  Informative and friendly

28. General Comments on the Course Things to consider changing next time  Provide name badges for all participants.  Try to accommodate hearing impaired  Less on supplements more on protein  More on practical mobility.  Would like a ‘road map’ of possible future drugs and timescales  Partners at first meeting to inform them more about course

29. Unexpected benefits The PD Specialist Nurse has noted a drop in phone calls from patients who have attended the course. The group have continued to meet socially and have supported members through difficult times

30. The future? All the lecturers enjoyed the course and felt it was worthwhile. As individuals they are happy to provide further input, but some services can not do so without funding. A review of current numbers indicates that if three courses were held for the next two years, in the future only two courses per year would be required. The drop in contacts to the PDSN may be mirrored by less reliance on the GP, this could be monitored by GPs over a longer term.