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Parkinson’s Western Australia Inc. Parkinson’s Western Australia Centre for Neurological Support The Niche, Suite B 11 Aberdare Road, Nedlands WA 6009

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Annual Report 2010 2011

www.youtube.com/ParkinsonsWA

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Parkinson’s Western Australia Annual Report 2010/2011

Parkinson’s Western Australia Annual Report 2010/2011


1,629 current combined patient load for our Parkinson’s Nurse Specialists.

595

The year in numbers number of people who have attended our Seminars in the past year.

64

followers on Social Networking Sites. 

Resource

Description

Manuals Eat Well, Stay Well with Parkinson’s Disease (2005)

A nutrition handbook for people with Parkinson’s.

Guidelines for Nursing Practice in Caring for People with A rapid reference for nurses caring for people with Parkinson’s Disease (2007) Parkinson’s. Guidelines for Physiotherapy Practice in Caring for People with Parkinson’s Disease (2007)

A rapid reference for physiotherapists treating people with Parkinson’s.

Parkinson’s Disease: A General Practice Approach (2008)

A diagnostic and treatment resource for general practitioners.

Parkinson’s Services, Strategies and Strengths (June 2009)

A Practical guide for young people with Parkinson’s.

increase in donations to Parkinson’s Western Australia.

650

896 home visits made by our Nurse Specialist Service.

54%

new referrals to the Nurse Specialist Service.

The following lists educational resources produced by Parkinson’s Western Australia

15%

education sessions given by our Nurse Specialists.

increase in income from grants and sponsorship since 2009/10.

support Groups helping people with Parkinson’s and their families across WA.

553

230

18

20

Educational Resources

3,000

delegates from around the world networked with partners at the Second World Parkinson’s Congress, Glasgow 2010. Parkinson’s Western Australia Annual Report 2010/2011

people took part in our inaugural Unity Walk 2010.

2,361 2,793 Current active current active members of members of Parkinson’s Parkinson’s Western Western Australia. Australia.

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Parkinson’s Western Australia Annual Report 2010/2011


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Educational Resources The following lists educational resources produced by Parkinson’s Western Australia Resource

ii

Contents

Description

DL Brochures

Who we are

1

Our vision

1

Our mission

1

Parkinson’s Disease and Driving (December 2008)

Outlines driving regulations for people with Parkinson’s.

Our history

1

Parkinson’s Disease and Hospitalisation Guidelines (January 2010)

Outlines planning and preparing for a hospital visit for people with Parkinson’s.

What we do

1

Medications Used in the Treatment of Parkinson’s Disease (June 2010)

Outlines medications used in the treatment of Parkinson’s.

Board of management

2

Professional advisory panel

2

Parkinson’s: The Condition and Services (July 2010)

Explains what Parkinson’s is and what Parkinson’s Western Australia does.

Parkinson’s Western Australia Staff

3

Young Onset Parkinson’s Disease (January 2011)

A guide for people diagnosed with Parkinson’s between the ages of 21-40.

A word from our patron

4

Parkinson’s Nurse Specialist Service (February 2011)

Explains the Nurse Specialist service and how it works.

President’s annual report

5

Parkinson’s nurse specialist report

7

What is a Support Group? (March 2011)

Explains the dynamic of our support groups and outlines how to join.

The year in pictures

9

Parkinson’s Disease and Communication (May 2011)

Explains the affects of Parkinson’s on communication and provides treatment options.

Support groups report

11

Parkinson’s Nurse Specialist Service: Information for Health Professionals (May 2011)

Outlines the Nurse Specialist service for health professionals.

Research committee report

12

Seminar and education report

13

Sponsors and donors

14

Financial report

15

Educational resources

19

C5 Booklets The Carer: Living with Parkinson’s (June 2009)

Information for carers and family of people living with Parkinson’s.

Medications to be used with caution for People with Parkinson’s Disease (July 2011)

Outlines drug interactions and medications that can worsen the symptoms of Parkinson’s.

Medications to be given with caution to people with Parkinson’s Disease (July 2011)

For health professionals

Our Proud Major Sponsors

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Parkinson’s Western Australia Annual Report 2010/2011

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Parkinson’s Western Australia Annual Report 2010/2011


Who we are

Our mission

1,629

To encourage, and where appropriate, develop and implement programs for the cure, treatment and care of people with Parkinson's.

Current combined patient load for our Parkinson’s Nurse Specialists.

What we do Parkinson’s Western Australia provides a nurse specialist service covering the Western Australian metropolitan area who make home visits and assist patients in the management of the condition. This innovative free service is the first of its kind in Australia and is funded by the Department of Health Western Australia. The nurse specialist service also provides support and education to allied health professionals, with the aim of ensuring informed care. Parkinson’s Western Australia provides regular therapeutical activities for people with Parkinson’s including singing, yoga and art therapy. Parkinson’s Western Australia has 19 support groups throughout Western Australia, all led by volunteers. Parkinson’s Western Australia run several seminars every year, tailored to suit people in all stages of their journey with Parkinson’s, and we also hold specific seminars just for carers. Parkinson’s Western Australia provides a wide range of Parkinson’s-specific educational resources.

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Parkinson’s Western Australia Annual Report 2010/2011

190 followers on Social Networking Sites. 

New referrals to the Nurse Specialist Service.

increase in donations to Parkinson’s Western Australia.

896 Home visits made by our Nurse Specialist Service.

21

Support Groups helping people with Parkinson’s and their families across WA.

15%

Education sessions given by our Nurse Specialists.

increase in income from grants and sponsorship since 2009/10.

18 553

Incorporated in 1984, Parkinson’s Western Australia Inc. provides a Parkinson’s Nurse Specialist Service; Support Networks for people with Parkinson’s and their family carers; and educational resources and training. It is estimated that there are some 8,000 people living with Parkinson’s in Western Australia.

Number of people who have attended our Seminars in the past year.

650

Our history

64

A nation without Parkinson’s.

54%

Our vision

18

The year in numbers

595

1

3,000

People took part in our inaugural Unity Walk 2010.

2,361

delegates from around the world networked with partners at the Second World Parkinson’s Congress.

Current active “I discovered a passion for members of Art that I Parkinson’s didn’t know I had, and this gave me Western Australia. great joy” John Yukich, Park Art attendee.

Parkinson’s Western Australia Annual Report 2010/2011


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Financial Report

2

Who we are

Parkinson’s Western Australia Inc.

Statement of Financial Position as at 30 June 2011 Current Assets Cash assets Inventories Prepayments Total current assets

Board of Management

Notes 2 4

2011 ($) 1,036,340 14,343 11,589 1,062,272

Restated 2010 ($) 1,092,746 15,340 8,434 1,116,520

5

51,747 51,747

22,234 22,234

1,114,019

1,138,754

26,088 88,145 114,233

52,061 78,138 130,199

Total liabilities

114,233

130,199

Net assets

999,786

1,008,555

999,786 999,786

1,008,555 1,008,555

Non-current assets Property, plant and equipment Total non-current assets Total assets Current liabilities Payables Provisions Total current liabilities

Equity Retained profits Total equity

6 2 and 7

2, 7 and 8

Back row: Ross Guyton; Geoff Pride (Treasurer); Peggy Habib; John McDonald (President); Geoff Sansom (Secretary). Front Row: Roseanne Thomas; Peter Willmott; Dr Natalie Gasson (Vice President) Absent: Steven Heath, Wendy Jacobsen

Professional Advisory Panel The above statement of financial performance should be read in conjunction with the accompanying notes

Consultant Neurologist

Professor Frank Mastaglia •

Consultant Geriatrician

Speech Pathologist

Senior Physiotherapist and Special Projects Coordinator

Optometrist

Dentist

Occupational Therapist Vacant

Dietician Ms Linley Boulden

Ms Marianne Pinto •

Pharmaceutical Advisor Ms Oksana Burford

Ms Liz Wason

Ms Caroline Silver •

Dr Natalie Gasson

Dr Barry Vieira •

Psychologist

Clinical Nurse/Coordinator Ms Janice Guy

Consultant Neurosurgeon Professor Chris Lind

Ms Tracy Ticehurst

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Parkinson’s Western Australia Annual Report 2010/2011

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Parkinson’s Western Australia Annual Report 2010/2011


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Who we are Parkinson’s Western Australia Staff

Parkinson’s Western Australia Inc.

Statement of Financial Performance for the year ended 30 June 2011 Income Books, videos and other merchandise Donations and bequests Educational and rural sessions Fundraising and events Grants and sponsorships Interest Membership income Newsletter advertising Research donations Seminars

Left to Right: Brenda Matthews (Executive Officer); Lucy Reader (Client Services/ Community Engagement); Kathleen Yip (Fundraising & Marketing); Claudia Wells (Finance & Administration); Angela Sideris (Office Manager); Kym Auret (Accountant) Absent: Dawn Mathieson (PNS Secretarial Support)

2011 ($) 14,530 172,534 2,817 136,067 408,897 53,053 26,502 3,097

Restated 2010 ($) 17,606 149,775 2,738 67,040 264,937 44,859 27,099 300 4,280 3,597

Total income

817,497

582,231

Expenditure Parkinson’s Australia Secretariat Accounting, auditing and bank charges Awareness Conferences Depreciation Employee entitlements Fundraising expenses Fundraising Officer Insurance Library resources Membership levies Merchandise for sale Closing inventory - decrease Newsletter Nurse program Advertising and promotion Office expenses Photocopying Marketing consultants Postage Rent and parking Research Seminars Speakers and support groups Staff recruitment Stationery Superannuation Telephone, teleconference and website Volunteer expenses Workers’ compensation insurance

12,520 19,364 160 4,073 7,157 181,689 38,049 61,776 2,870 514 964 15,303 997 2,329 388,758 10,053 5,644 4,718 219 11,023 14,066 6,274 4,178 195 10,283 15,903 1,462 2,515 3,210

15,608 11,721 253 3,055 6,730 180,571 21,042 21,097 2,971 469 492 17,844 11,923 942 368,940 13,720 801 2,641 9,753 13,127 7,000 17,972 4,856 503 8,393 14,137 5,475 1,397 3,034

826,266

766,467

Net profit/(loss) before abnormal item

(8,769)

(184,236)

Opening retained profits

1,008,555

1,192,791

999,786

1,008,555

Total expenditure

Left to Right: Jenny Taylor (Parkinson's Nurse Specialist - East); Janet McLeod (Parkinson's Nurse Specialist - North); Jo Chadwick (Parkinson’s Nurse Specialist - South)

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Parkinson’s Western Australia Annual Report 2010/2011

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Financial Report

Closing retained profits

Notes

2 and 7

2 and 7

2 and 7

2 and 7

The above statement of financial performance should be read in conjunction with the accompanying notes 19

Parkinson’s Western Australia Annual Report 2010/2011


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Financial Report

A Word from our Patron

Parkinson’s Western Australia Inc.

Statement by Members of the Committee

Dr Janet Woollard, MLA

In the opinion of the Committee the financial report:

I am extremely proud to have once again been associated with the tremendous commitment and achievement of all involved in Parkinson’s Western Australia. The organisation operates through a positive and successful mix of staff and volunteers, all with seemingly boundless energy to assist and support people with Parkinson’s, their families and carers.

1.

Presents fairly the financial position of Parkinson’s Western Australia Inc. as at 30 June 2011 and its performance for the year ended on that date.

Volunteers offer their time and skills free of charge. The organisation can not operate without them, and I express my personal thanks to each of them for keeping Parkinson’s Western Australia moving forward.

2.

At the date of this statement, there are reasonable grounds to believe that Parkinson’s Western Australia Inc. will be able to pay its debts as and when they fall due.

Parkinson’s Western Australia has welcomed a well-deserved and much needed funding increase. The State Government has acknowledged the incredible work undertaken by all not-for-profit service providers such as Parkinson’s Western Australia, and has granted an increase in funding. This increase will finally enable Parkinson’s Western Australia to move towards a more equitable pay level for our hard-working staff.

This statement is made in accordance with a resolution of the Committee and is signed for and on behalf of the Committee by:

This has been the first full year our three Parkinson’s Nurse Specialists have been funded by the Department of Health Western Australia. The nurses’ services have been invaluable and I express my thanks to the State Government for this commitment to the Parkinson’s community.

The Committee has determined that the Association is not a reporting entity and that this special purpose financial report should be prepared in accordance with the accounting policies outlined in Note 1 to the financial statements.

Demand cannot be met by our three existing specialist nurses, so Parkinson’s Western Australia will look to employ a fourth nurse in the coming months. This additional nurse will help meet increased demand in the metropolitan area, as well as support people with Parkinson’s and family carers in regional Western Australia. Further acknowledgement of the great work of Parkinson’s Western Australia came this year through the recognition of the Movement Disorders Parkinson’s Nurse Faculty by the Royal College of Nursing Australia. I am pleased and proud that the dedication and work of our nurse specialists have been formally recognised in this manner. I congratulate Parkinson’s Western Australia on being a major contributor to the development of Parkinson’s-specific educational resources for the benefit of the Western Australia Parkinson’s community and Parkinson’s communities throughout Australia. Another positive step has been the expansion of therapy services to include singing and yoga, in addition to art. I am proud to be involved with Parkinson’s Western Australia. It is a great pleasure to be involved in an organisation where staff and volunteers work together with such commitment to their cause. I look forward to continuing my relationship with you and wish each one of you the very best for the next financial year.

Dr Janet Woollard MP Patron Parkinson’s Western Australia 18

Parkinson’s Western Australia Annual Report 2010/2011

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Parkinson’s Western Australia Annual Report 2010/2011

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President’s Annual Report John McDonald President The nurse specialist service is one of Parkinson’s Western Australia’s principal activities. It is a highly valued support resource for people with Parkinson’s, their families and carers, and it is respected amongst all health professionals connected with the care of people with Parkinson’s. The service we operate is regarded as the ideal model for community based care and is the envy of our counterparts in other states.

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Sponsors and Donors The provision of quality care to people with Parkinson’s and support for their family carers is provided because of the generous support of individuals, businesses and community groups. A special thank you to all our donors for their care and support throughout the year. The following community groups, individuals and businesses have contributed by sponsoring the production of a range of services offered by Parkinson’s Western Australia: Adinfern Wines

Curtin FM

Karri Springs Water

Rotary Club of Matilda Bay

Aleph Moving Images

Dorsogna

Lee Saunders

Sail and Anchor Fremantle

Andrew Trunkfield

Dr Janet Woollard MLA

Medtronic

Snap Printing Subiaco

Atrium Hotel Mandurah

Dynamic Condition

Midleaf Pty Ltd

South of Perth Yacht Club

Barbara Bowra

Esplanade Hotel Fremantle

Minter Ellison Lawyers

St. John’s Ambulance

Boehringer Ingelheim

Farm Weekly

Moss Street Parkinson’s Clinic

ICCWA Stay on your Feet

Brian Hunt

Federal Department Health and Ageing Nicole Davis - Fizzy Red

Supa IGA Wembley

Importantly, the state government has recently recognised the important role non-government organisations (NGO’s) such as ours play in the community, and with effect from 1 July 2011 have increased contract payments for selected NGO’s by 15% with a further 10% to be added next year. This now means from 1 July 2011 the nursing service is fully funded by the state government and their continued support is, I am sure, greatly appreciated by all.

Café 2 U

Flying Edits - Jan Knight

Notre Dame University

System Pty Ltd

Cappuccino Xpress

Fronteir Group

Novartis Pharmaceuticals

Tanya Larson

Carers WA

Have a Go News

Osborne Park Hospital - PD clinic

Town of Cambridge

Coles Supermarket Subiaco

IGA Broadway Nedlands

ParkC Centre

Trident Insurance Group

As I have reported previously, our strategy has always been to have, as a minimum, four nurses serving the greater metropolitan area. I foreshadowed last year the possibility that, in the absence of government funding, Parkinson’s Western Australia may once more consider funding a fourth nurse for up to two years to again demonstrate this obvious need to the government. The Board of Management is now actively considering this, although now with a view to splitting the role between the metropolitan and rural areas, particularly those country areas not already serviced by the neurological nurses.

Community Newspaper Group Independent Living Centre

Pinelli Wines

Country Women’s Association

Jackie Ewers

Post Newspapers

Crowne Plaza Hotel Adelaide

Jackie Lewis

Quality Resort Sorrento Beach

Parkinson’s Western Australia has continued to facilitate a wide range of programs to enhance the wellbeing of people with Parkinson’s. The yoga classes have continued, with teacher Barbara Bowra, as too have the Park Art classes conducted by Jackie Lewis. Thanks to them both and to the Neurological Council of WA for their funding support of Park Art. Two exhibitions were held in the Niche displaying the artistic talents of painters Yvonne Sinclair and Andrew Trunkfield; and the patchwork quilting skills of Sonja Songhurst.

Albany Support Group

KD Johns

Swick Resources

All things Special Gift Shop

Kingsley Support Group

The Galvin Family Foundation

Blue Sky Health Care

Morley Support Group

The Marian & EH Flack Trust

Buckley Caring Centre

Peach Trust Fund

The McCusker Foundation

City of Joondalup - Workplace Giving

Pickering Brook Ladies Bowls

The Stan Perron Charitable Foundation

Singing classes were started early in 2011 enabled by a grant from the Marion Flack Trust. These have become very popular and offer therapeutical benefits and enjoyment. The singing teacher, Jackie Ewers, is doing a marvellous job developing the talents of the group.

Compressed Air Repairs & Equipment

Postie Fashions Pty Ltd

United Way West - Workplace Giving

Department of the Premier & Cabinet - Staff

Pub Jive & Rock ‘n’ Roll

Wasarians Inc.

Dianella Rangers Square Dance Club

Pumphrey’s CWA

Wesfarmers

A wide-ranging seminar program was again offered during the year. The Newly Diagnosed seminar was presented a record three times and was widely promoted on radio and in the press. These seminars are very popular and many thanks go to all the presenters. Two of the Parkinson’s nurses attended the World Parkinson’s Congress in Glasgow, Scotland. This enabled them to keep abreast of new developments in treatment and care, and expand their knowledge and understanding of the complexities of Parkinson’s.

Fremantle Support Group

Qantas Help Fund

Westnet Pty Ltd

Geraldton Support Group

Rotary Club of Booragoon

Westpac Group - Matching Gifts

Inner Wheel Club of Gosnells

S & M Henderson

WJ & MS Hughes Foundation

2010-2011 was the first year the Department of Health Western Australia provided funds to support a third nurse. Funding prior to this came from Parkinson’s Western Australia and although the level of funding in 2010-2011 still did not meet the full cost of the service, this extra funding support, together with the generosity of our supporters, certainly eased demands on our resources.

The financial state of your organisation remains sound and a small operating surplus was achieved against a budgeted deficit. Although our operating costs increased by about 11%, our income was up on last year by approximately 40%. A surplus is budgeted for this current year, but this will change if we proceed with employment of a fourth nurse. Benefits from the appointment last year of a fundraising officer started to be seen during the year. Record responses were achieved from the Mother’s Day raffle, and the annual Street Appeal. The inaugural Parkinson’s Unity Walk raised a better than expected $65,000 and attracted over 600 walkers.

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Parkinson’s Western Australia Annual Report 2010/2011

The following community groups and businesses have made generous donations to support the work of the Association:

Thank you to all the Parkinson’s Support Groups and their leaders who have assisted tirelessly in raising funds for the Association.

Grants to support specific projects were received from Department of Health WA - Parkinson’s Nurse Specialist Service Carers WA - Carers Short Break Neurological Council of WA - Park Art Lotterywest - Office Refit

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Parkinson’s Western Australia Annual Report 2010/2011


Seminar and Education Report

13

Newly Diagnosed

Mobility and Parkinson’s

(2 September 2010)

(16 April 2011)

Janet McLeod - Parkinson’s Nurse Specialist spoke on Parkinson’s treatment options and coming to terms with the diagnosis of Parkinson’s. This Seminar was aimed at people diagnosed with Parkinson’s within the past five years, as well as their family and friends.

Tanya Larsen, Physiotherapist, spoke about mobility issues in Parkinson’s. Jackie Ewers, leader of our singing therapy class, gave a short presentation on the benefits of singing therapy for people with Parkinson’s, and an update on the progress of the Parkinson’s Western Australia Singing with Parkinson’s group.

Cognitive Issues and Stress (16 October 2010)

Carer’s Workshop

Dr Carmela Pestell, Clinical Psychologist and Clinical Neuropsychologist discussed cognition changes that may occur in Parkinson’s.

(26 May 2011)

Postcards from Scotland - Report from the World Parkinson’s Congress

Jane McKinley from Carers WA spoke about the services offered by Carers WA, and how they can help carers of people with Parkinson’s. Janet McLeod spoke on relationships, communication, body image, apathy and amotivation. Volunteers gave head, shoulder and hand massages to carers.

(6 November 2010) Janet McLeod - Parkinson’s Nurse Specialist presented information from the Second World Parkinson’s Congress, which she and Jo Chadwick attended in September 2010.

Newly Diagnosed (23 June 2011)

Seminar DVDs Newly Diagnosed (21 February 2011) Parkinson’s Western Australia run several ‘Newly Diagnosed’ Seminars throughout the year to meet popular demand.

Parkinson’s Western Australia is committed to filming all seminars throughout the year (only one Newly Diagnosed seminar is filmed). These seminar DVDs are distributed to our support groups and are made available in our library for people to borrow. A huge thank you to the Rotary Club of Booragoon who fund the production of these DVDs.

President’s Annual Report A major refit of the Parkinson’s Western Australia office at the Niche was implemented thanks to support from Lotterywest. This now offers an improved, albeit cosy, working environment. A survey of members was mailed in February 2011 to obtain feedback on the work of Parkinson’s Western Australia and to elicit thoughts on areas for improvement. A summary of these findings will be made available early 2012, and will feature in future newsletters and on our website. These findings will be considered when doing our strategic planning. Volunteers play an important part in Parkinson’s Western Australia’s activities and two in particular were recognised for their contributions. Dennis Ford, long-standing leader of the Albany Support Group, was made an Honorary Life Member. Dennis played an important role in getting a neurological nurse based in Albany. Di Libby was selected as Volunteer of the Year, recognising her important work with the Kingsley Support Group. Congratulations to them both, and many thanks to all our volunteers for their valuable contributions during the year. Support groups play an important role in improving the wellbeing of participants and the success of these groups is very dependent on the enthusiasm and efforts of the group leaders. Peggy Habib, our Volunteer Support Group Coordinator, expands on this in her Support Group Report on page 11. I must mention again the great work done by Karen Rowland, leader of the Western Suburbs Support Group, last year’s Volunteer of the Year and who was nominated Parkinson’s Western Australia’s Ambassador in January 2011. Karen regularly speaks, with great passion, to a wide variety of audiences including university, medical and health professional students, service organisations, and anyone else who will listen to her personal Parkinson’s journey. Thank you again to both Lee Saunders for his continuing advice on fundraising strategies and to lawyer, Lee Rosetto of Minter Ellison Lawyers, for their pro-bono support. Many thanks also to our Patron, Janet Woollard MLA, for her continued input and support. Members of our Professional Advisory Panel, when called upon, give generously of their time and expertise and this is greatly appreciated. My thanks to my colleagues on the Board of Management for their valuable contributions during the year, and to Peggy Habib, the Volunteer Support Group Coordinator and Vice President Dr Natalie Gasson who chairs the Research Committee. Both have separate reports on pages 11 and 12 respectively. Thanks in particular to Stephen Heath for his work on the constitution, Ross Guyton for his work on our strategic planning and Treasurer, Geoff Pride for his work with the budget and accounting functions. A special word of thanks to Secretary Geoff Sansom and long serving Board member Peter Willmott, both of whom are retiring. The smooth operation of your association would not be possible without our dedicated, hard working staff who are ably led by Executive Officer, Brenda Matthews. Their contribution is greatly appreciated by the Board and all who come into contact with them. Again, the work done amongst people with Parkinson’s, their carers and health professionals by the three nurse specialists: Janet McLeod; Jo Chadwick and Jenny Taylor deserves particular thanks. The dedication, empathy and professionalism they display is valued by all. Support has continued for the national body, Parkinson’s Australia. This peak body’s role is largely to lobby and advocate at a national level on behalf of people affected with Parkinson’s, particularly to the Australian government. It continues to financially support the successful online General Practitioner’s Guide to Parkinson’s Disease and has recently commissioned a review and update of the 2006 Access Economics study on Parkinson’s. The budgeted cost of this Canberra-based office is approximately $220,000 for 2011/2012. State member organisations contribute about 50% of this cost proportionately, on a population basis.

John McDonald President Parkinson’s Western Australia 16

Parkinson’s Western Australia Annual Report 2010/2011

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Parkinson’s Western Australia Annual Report 2010/2011

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Parkinson’ s Nurse Specialist Report

Research Committee Report

Jenny Taylor R.N. Janet McLeod R.N. Cert. Gerontology B.N. MNurs. Jo Chadwick R.N. Dip PD The Parkinson’s Nurse Specialist Service continues to provide informed nursing support to people living with Parkinson’s (those diagnosed with the condition, family members and health professionals). For the year reported, the role was funded by the Department of Health Western Australia. The catchment areas are defined geographically - Janet McLeod is responsible for north of the river, Jo Chadwick for south of the river and Jenny Taylor for the eastern suburbs. The task of annual updating and reviewing of statistics continues and is now factored into our yearly calendar. This has proved to be a beneficial exercise, which results in greater accuracy of numbers and provides a quantitative basis for lobbying for additional funding. The following is an overview of the activities of the nurse specialists during 2010-2011 over and above the routine patient activity and education sessions quantified later in the report: July 2010: Jenny attended a national Parkinson’s nurses’ meeting hosted by Hospira in Sydney. Jenny conducted a two day visit to Northam visiting patients and carrying out education for health professionals. August 2010: Janet and Jo attended the inaugural face- to-face meeting of Movement Disorder and Parkinson’s Nurses Faculty (MDPNF), Royal College of Nursing, Canberra. The MDPNF was officially launched that evening in the presence of Governor General, Quentin Bryce. Janet presented at a Post Graduate Physiotherapist Course at University of Western Australia and an Australian Neuroscience Nurses Association meeting held at Sir Charles Gairdner Hospital. Jo presented to the Social Work Department at Fremantle Hospital on PWA and the PNS role. September 2010:

Dr Natalie Gasson Vice President, Chair of Research Committee This year has proved to be somewhat difficult for the research committee; we have lost another member of the team. I would like to thank Gaye Hargreaves for her contributions to the group. We are sad to see her go but understand that work must take priority. We would like to ask once again for anyone who is interested in research to come and join our group. We meet informally four times per year. The bulk of the ‘work’ we ask you to do is reading applications for assistance (either for recruiting participants for studies, or for funding). You do not need any special skills – only an interest in research relating to Parkinson’s. We have also recruited a new academic to the research committee, however, as she has not formally accepted our invitation yet, I will not reveal her name! The Speech Pathology & Swallowing edition of our manuals in Best Practice has progressed this year. The group has met a few times to look at the direction they will take with the manual. We will not be rushing however, as the speech pathologists involved are donating their time for free and we are grateful for that. As a reminder, this manual will add to our two previous Best Practice manuals (Nursing and Physiotherapy). Ongoing projects we have continued to support during 2011 include: •

A randomised control trial of cognitive behavioural therapy for the treatment of anxiety and depression in Parkinson’s (Treuong, Gasson & Egan; Curtin University). This trial commenced in the middle of 2010 and will be continuing into 2012. Cognitive and motor homogeneity in idiopathic Parkinson’s (Meghan Thomas and the ParkC team; Edith Cowan University, Vario Health Institute).

New projects we are supporting in 2011 and beyond include:

Janet and Jo attended the 2nd World Parkinson’s Congress in Glasgow, Scotland. October 2010: Jenny conducted a two day visit to Northam visiting patients and carrying out education for health professionals. Janet conducted an education session for massage students at TAFE, Central. Janet and Jo presented Postcards from Glasgow to a Perth nurses’ meeting funded by Novartis. Jo presented on Travel and Parkinson’s to the Young Onset Support Group. November 2010: Jenny and Jo attended a Novartis nurses’ meeting in Melbourne where Jo presented feedback from The World Congress attended in Glasgow. Janet attended a workshop in Melbourne on Parkinson’s funded by Lundbeck Institute. Roger Barker (United Kingdom) presented at several meetings in Perth, which were attended by all nurses. Janet presented at a Parkinson’s seminar at Osborne Park Hospital. December 2010: Student placement continued. The six monthly report for the Department of Health Western Australia was prepared. Edith Cowan University nursing students on placement.

• • •

The impact of sleep fragmentation and hypoxia on executive function, memory, and health-related quality of life in Parkinson’s (Loftus, Bucks, Kroczek, and Thomas; University of WA & ParkC). Understanding the emotions of others: A study of emotion perception in Parkinson’s (Marneweck, Hammond, & Loftus; University of WA). Expiratory muscle strength training in moderate to severe Parkinson’s: effects on swallow, cough, voice, and speech function (Ng, Langdon, Cartwright, & Hennessey; SCGH & Curtin University).

I would like to take the opportunity to thank Parkinson’s Western Australia members who take the time to participate in the research projects we advertise and fund. Each project that takes place advances knowledge in the area of Parkinson’s. While not every project has direct benefits to the people who participate, I think participating has the great advantage of encouraging researchers to look at Parkinson’s-related issues and in a general sense, raises awareness of Parkinson’s in the community. If we can help researchers then we are ultimately helping ourselves!

January 2011: As in previous years we dedicate the first two weeks to “housekeeping”- updating current patient status and spring cleaning the office. February 2011: 10

Parkinson’s Western Australia Annual Report 2010/2011

Dr Natalie Gasson Vice President/Chair of Research Committee 15

Parkinson’s Western Australia Annual Report 2010/2011

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Support Groups Report Peggy Habib Volunteer Support Group Coordinator In the last twelve months I have visited many of our support groups in person, which has brought home how large an area Parkinson’s Western Australia covers. All our support groups are led by a voluntary group leader; much time and effort is given by them to ensure their group offers the social networking and emotional support needed for members. I, on behalf of Parkinson’s Western Australia, wish to thank them for their dedication and commitment to the role and to the members for their support.

Support Groups Albany Armadale Bridgetown Bullcreek/Leeming Bunbury Collie Esperance Fremantle/Melville Geraldton Glen Forrest/ Mundaring Kingsley Lesmurdie/ Kalamunda Mandurah Morley Narrogin Northam Western Suburbs Young Onset

The Annual Support Group Leaders luncheon in February went really well. This was an opportunity for leaders to exchange ideas and to meet the nurses who updated us with the latest information in Parkinson’s. I travelled to Esperance in July to meet Marion Mitchell, who has set up a support group there. I would like to express our thanks to Marion for taking on this role with real enthusiasm. We wish the Esperance Support Group every success in the future. After five and a half years Lorraine Flannegan has stepped down as leader of the Bunbury Support Group. We would like to thank Lorraine for her dedication and wish her every success in the future. Betty McCleary has taken over from Lorraine and is enjoying leading the group. Thanks also to Vivienne Baldwin for her leadership of the Rockingham Support Group over many years. This group has now disbanded, but we are hoping to get it running again in the near future. Laurie Vicary has agreed to lead the Bullcreek Support Group, and meetings have been well attended. I wish Laurie every success with the group. We thoroughly appreciate the efforts of support groups in fundraising initiatives this year. Key events to note include a fashion parade organised by Morley Support Group, Lyn Navendorn, who donated money in lieu of 60th birthday presents, and the annual street appeal.

Parkinson’s Nurse Specialist Report Janet enrolled at Edith Cowan University – Post Graduate Certificate in Counselling Skills. This two semester part-time course is funded and supported by PWA. Newly Diagnosed Seminar was facilitated by Janet. Jenny and Janet addressed the Volunteer/Staff Training session. Jo attended the Bullcreek Support Group. March 2011: Jo presented to health professionals at Rockingham Hospital. Jenny observed Deep Brain Stimulation procedure at Sir Charles Gairdner Hospital. Jo conducted a three day visit to Narrogin conducting education sessions for health professionals and people with Parkinson’s, attending the support group there. Jo presented to Certificate III students at Beaconsfield TAFE. April 2011: PNS on annual leave May 2011: University of Notre Dame nursing students on placement for three weeks. Jo presented to the Young Onset Support Group on medication and diet. Jenny conducted a two day visit to Goomalling, Northam and York visiting patients and carrying out education for health professionals. Jenny and Jo hosted first year medical students from University of Western Australia. June 2011: Jo spoke at the Booragoon Rotary Club on Parkinson’s Western Australia and the Parkinson’s Nurse Specialist role. Jenny carried out a full day education session at Wanneroo Nursing home. Jo presented an education session at Royal Perth Hospital, Neuroscience Nursing Course. Jo and Jenny presented at the Newly Diagnosed Seminar. Jo attended the Lundbeck Institute, Parkinson’s Workshop for Health Professionals in Melbourne. The above calendar outlines highlights of the year reported. It is vital to remember that these events are in addition to the routine activities of our role. During this year we have continued to facilitate educational sessions at various aged care facilities, hospitals and support groups. Janet continues to be a member of the Research Committee (Parkinson's Western Australia Inc.) and attends ParkC Scientific Steering Committee as a representative of Parkinson's Western Australia Inc. All nurses continue to attend meetings at North Metropolitan Parkinson’s clinic, Osborne Park Hospital and South Metropolitan Parkinson’s clinic, Moss Street, Fremantle – this adds to the linkages with our colleagues working in the field of Parkinson’s. The ultimate benefit is to our patients as there is liaison between our community-based service and the hospital-based teams. The nurses continue to be members of the following associations: ANNA – Australian Neuroscience Nurses Association EPDA – European Parkinson's Disease Association EPNN – European Parkinson’s Nurses Network RCNA – Royal College of Nursing Australia MDSA – Movement Disorder Society of Australia MDPNF – Movement Disorders and Parkinson’s Nurses Faculty CN3 – Community Neurological Nurses Network

Publications Parkinson’s Information Sheets: - Incontinence and Parkinson’s. Glossary of Terms

The Carers Short Breaks have been well attended and we continue to receive positive feedback from attendees. Thanks to Brenda and the administration staff who are always very helpful and ready to listen. I look forward to the next twelve months and to meeting more members.

Brochures: Young Onset Parkinson’s, Parkinson’s and Communication, Parkinson’s Nurse Specialist Service: Information for Health Professionals The following statistics outline the activities of Parkinson's Nurse Specialist for 2010-2011: Referrals: 553— Home visits: 896— Hospital visits: 23— Nursing home visits: 222— Office consultations: 10 Education sessions: 64— Current combined patient load: 1629

Peggy Habib Volunteer Support Group Coordinator 14

Parkinson’s Western Australia Annual Report 2010/2011

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Parkinson’s Western Australia Annual Report 2010/2011

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The year in pictures

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Parkinson’s Western Australia Annual Report 2010/2011

The year in pictures

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Parkinson’s Western Australia Annual Report 2010/2011

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Parkinson’s Western Australia Annual Report 2010/2011  

Annual Report 2010/2011

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