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Parkinson’s NSW Annual Report 2018/2019
Parkinson’s NSW
Annual Report
2018/2019
Vision | Our AspirationQuality of life now, as we work towards a community free of Parkinson’s.
Mission | Our Focus To enhance the quality of life of people living with Parkinson’s.
Purpose | What We Do To connect people living with Parkinson’s with life-enhancing support and services.
By engaging with thecommunity throughParkinson’s supportgroups, educationand special events
By having the rightgovernance and structure,
the right people andappropriate infrastructure,
to deliver our message
By delivering information,counselling and nursingservices, and providing
referral pathways tospecialists, allied health
professionals andrelevant services
By providing funds tosupport research that
makes a di�erenceNOW for people living
with Parkinson’s
By increasing brandawareness of
Parkinson’s NSW andthe vital services we
provide
By providing a diverserange of fundraisingprograms to ensure
financial sustainabilityand meet
organisational needs
Research
Sustainability
BrandAwareness
OrganisationalDevelopment
CommunityEngagement
Services
Message from the President 2
Message from the CEO 3
Stronger & continuing to grow 4
Our support groups 8
Community based nurses 10
Advocacy 11
Exercise second to medication 12
Sharing knowledge 13
Celebrating 40 years of Parkinson’s NSW 14
Raising awareness of Parkinson’s 16
Building relationships 18
Fuelling growth of services 20
Building knowledge base 22
Research 23
Board of Directors 24
Macquarie Hospital Building 17 51 Wicks Road North Ryde NSW 2113 1800 644 189 [email protected] www.parkinsonsnsw.org.au www.facebook.com/parkinsonsnsw
www.instagram.com/parkinsons_nsw
ABN 93 023 603 545 ACN 622 455 985
Contents
By engaging with thecommunity throughParkinson’s supportgroups, educationand special events
By having the rightgovernance and structure,
the right people andappropriate infrastructure,
to deliver our message
By delivering information,counselling and nursingservices, and providing
referral pathways tospecialists, allied health
professionals andrelevant services
By providing funds tosupport research that
makes a di�erenceNOW for people living
with Parkinson’s
By increasing brandawareness of
Parkinson’s NSW andthe vital services we
provide
By providing a diverserange of fundraisingprograms to ensure
financial sustainabilityand meet
organisational needs
Research
Sustainability
BrandAwareness
OrganisationalDevelopment
CommunityEngagement
Services
2 Parkinson’s NSW Annual Report 2018/19
Fiscal 2018-19 was my first full year as President of Parkinson’s NSW.
During that time, governance was identified as an area of risk at both Board and operational levels, right through to our Support Group network which operates as an extension of Parkinson’s NSW.
Accordingly, we put in place a new, skills-based Board and reviewed and strengthened strategic planning and operating procedures throughout the organisation.
With improved governance and a surplus of $2.1 million from the previous year, we were able to focus on growth and investments in strengthening the organisation.
This was part of the ongoing, Board-approved five-year strategic plan. By the end of the year we had a stronger, more sustainable organisation with an improved infrastructure and a wider range of services and supports for people living with Parkinson’s.
Our robust business processes played a key role in our successful application to become a Registered Provider under the National Disability Insurance Scheme (NDIS).
In closing I would like to thank four Directors who ended their terms during the year – former Vice President Professor Bryce Vissel, Director Lawrence Gray, Director Andrew Whitton and Director Colin Hall.
Thanks also to our Parkinson’s NSW Support Groups which in addition to providing peer support, play a key role as sounding boards as we manage and grow our operations.
We also acknowledge the hard work of our staff members who are steadily improving and expanding the services and support offered by Parkinson’s NSW.
David Veness President Parkinson’s NSW
Message from the President
Organisational Development
Sustainability Services
The drive for sustainability was a priority at the operational level of our organisation during the year under review. We established that 93 percent of Parkinson’s NSW revenue was derived from fundraising. We will not abandon fundraising, but this level of dependence is not sustainable.
Therefore we have worked hard on diversifying revenue streams, including increasing the number of grant applications and gaining Registered Service Provider status with the National Disability Insurance Scheme (NDIS). This NDIS relationship is both a requirement of NSW Government policy and a new source of revenue for Parkinson’s NSW.
Advocacy at Local, State and Federal levels of government was also a key activity. We worked to secure funding for more Parkinson’s Specialist Nurses, as well as recurring funding for the many other services we deliver to the NSW Parkinson’s community – currently at no cost to government.
We were successful in placing a new Parkinson’s Specialist Nurse in Port Macquarie during the year. In addition to our existing three community-based nurses, an additional two placements are pending as at the time of writing this report.
Our infrastructure was strengthened through investments in information technology – including a database program that will be key in improving the efficiency, effectiveness and security of service delivery.
We delivered services for people living with Parkinson’s and their carers and families at a particularly high rate over the past year – via the InfoLine, counselling, consultations by Parkinson’s Specialist Nurses, NDIS advocacy, and education seminars held across the State.
In summary, over the 2018-19 financial year, we made good progress against our goals under the Board-approved Six Pillars strategy which covers Services, Sustainability, Brand Awareness, Research, Community Engagement and Organisational Development.
This performance would not have been possible without the dedication and resilience of Parkinson’s NSW staff, volunteers and Support Group participants. Our thanks also go to the many donors and bequestors who have generously contributed to the Parkinson’s cause.
Jo-Anne Reeves Chief Executive Officer Parkinson’s NSW
Message from the CEO
Organisational Development
Sustainability Services
In fiscal 2017-18, Parkinson’s NSW commissioned the Building for the Future review of three key services – InfoLine, Education and Counselling.
Based on the findings and recommendations of that review, work in fiscal 2018-19 focused on strengthening and expanding these services in a sustainable manner. The results below speak for themselves.
A new service was also added during the year under review. The PNSW Connect team was formed at the beginning of the year to begin the complex and challenging process of applying to become a Registered Service Provider under the National Disability Insurance Scheme (NDIS).
The team includes:
• A consultant with extensive experience in governance, quality assurance and systems and processes
• A Registered Parkinson’s Nurse working as an advocate supporting people who are applying for the NDIS
• A Social Worker initially offering free NDIS Planning support for people eligible for the Scheme, then transitioning to providing billable services.
The PNSW Connect team’s year-long effort was successful and Parkinson’s NSW begins the 2019-20 year with a new revenue stream – billable Support Coordination and Coordination of Supports services for people living with Parkinson’s who have successfully applied for NDIS funding.
InfoLine
The InfoLine service covers the whole of New South Wales and is staffed by Parkinson’s Registered Nurses.
During the year, the InfoLine team handled 9,785 enquiries via email and calls to 1800 644 189. This was near the level of activity in 2017-18 and indicates sustained demand for this service.
These enquiries included:
Newly diagnosed 312
Management of symptoms 1,086
Case Management 474
Calls were received from people living with Parkinson’s and their family members and carers, as well as medical and allied health professionals.
Nurses on the InfoLine team attend regular professional education with the Australasian Neurological Nurses Association and The Movement Disorder Association.
Education Seminars
During the year, 24 education seminars were arranged, attracting more than 850 people living with Parkinson’s and carers, people newly diagnosed with Parkinson’s and their carers, aged care support staff and General Practitioners.
Stronger & continuing to grow
SustainabilityServices
4 Parkinson’s NSW Annual Report 2018/19
Parkinson’s NSW Annual Report 2018/19 5
Community-based Parkinson’s Specialist Nurses
Our community-based Parkinson’s Specialist Nurses performed more than 2,350 consultations during the year, including 870 home visits, 1,560 phone consultations and 212 hospital and aged care visits. New referrals totalled 334.
These numbers do not include ongoing visits to Support Groups, nor the many daily contacts with primary and allied health professionals.
Parkinson’s Specialist Nurse delivers local support
Gail and Jeff had heard of Parkinson’s Specialist Nurse Vince Carroll before they met him. Vince was a guest on a community radio show, discussing Parkinson’s in the Coffs Harbour community.
Gail had been living with Parkinson’s for four and a half years, but her symptoms progressed quickly. While she does not experience tremor, she does have issues like a soft voice, limited mobility, freezing of gait and sleep disturbance.
Gail and Jeff needed local support.
“Living in Coffs Harbour, we only have access to visiting neurologists. They are capable and helpful, but also busy people so you don’t always have time to ask questions and digest what they are telling you,” said Jeff.
“When we heard the calm and clear way Vince spoke on the radio, we knew we had to contact him.” On first meeting, Gail found Vince to be “…softly spoken, empathetic and understanding.” He soon became a mainstay in their life.
Vince is available to answer Gail and Jeff’s questions, provide advice on medication, and help discuss options and opportunities to improve Gail’s quality of life.
“Vince has the ability to just be there when you need him,” said Gail.
“When I was admitted to hospital, Vince visited me. When we had an appointment with the visiting neurologist, we showed up at his office to find Vince already there. He was able to provide important background during the consultation”.
164 NDIS applicants supported
The Parkinson‘s NSW NDIS Nurse Advocate supported 156 people living with Parkinson’s through their journey as they applied for funding from the National Disability Insurance Scheme. The Parkinson’s Specialist Nurse in Coffs Harbour supported another eight NDIS applications.
As of the end of the fiscal year, 33 people had successfully gained NDIS funding upon their first application with the support of Parkinson’s NSW. Another six people were successful after being supported to reapply following an initial rejection.
Owen finds his voice
Owen Turner was 53 when he was finally referred to a neurologist to learn he had Parkinson’s disease a few years ago.
“I’d been having trouble with right-hand dexterity,” explained Owen. “I just put it down to a neck injury. But there were other things – I am a consultant and work with a team. I’d had some troubles with people understanding me, saying I was mumbling. My voice was very soft, I would freeze when I was speaking.”
Owen was prescribed drugs which helped with some of the symptoms, but he wanted more long-term help to stay as well as possible.
“I knew I would need ongoing support with specialists,” says Owen. “And I wanted to keep working. I applied for NDIS funding but was turned down.”
Fortunately, Owen contacted Parkinson’s NSW and received assistance from Registered Nurse Advocate Margi Edmondson. Margi explained that his application would need a lot more information, including specialist input.
“I put together a program for the things I needed, with specialist support,” says Owen. “After Margi explained what the NDIS wanted, my application was successful.”
Once his NDIS plan was approved, Owen was able to complete the four-week LSVT speech therapy program and now continues with daily voice exercises.
“My wife could hear the difference just half-way through,” says Owen. “It’s cleared up the issues I had at work. It’s also much better for my family. Even the cat can hear me now when I say, ‘get off the table!’”
Stronger & continuing to grow
SustainabilityServices
6 Parkinson’s NSW Annual Report 2018/19
Parkinson’s NSW Annual Report 2018/19 7
Counselling
The number of telephone counselling sessions conducted during the year grew to 217, and a further 296 face-to-face sessions took place.
The Parkinson’s NSW Counsellor works from two locations in Sydney – War Memorial Hospital and Wolper Jewish Hospital. She supports people living with Parkinson’s, people who are newly diagnosed, carers and family members. Her time is distributed as follows:
Telephone counselling is accessed by people living in metropolitan, regional and rural areas. The demand for rural counselling support increased over the year in review.
Typical issues addressed in counselling include:
• Partners adjusting to the role of carer
• Grief around the loss of an equal partner
• Anticipated grief and loss around putting a partner into nursing home care
• Anxiety in observing changes in partner as Parkinson’s progresses
• Anxiety around the loss of cognitive function, memory loss, slowness in thinking, tiredness and inability to focus that comes with Parkinson’s
• Carer burnout
• Family conflict around putting a parent living with Parkinson’s into an aged care facility
Counselling helped Cecilia learn to live with hope
Cecilia described her encounter with Parkinson’s NSW Counsellor Shushann Movsessian as a new stage in her life as a Parkinson’s patient.
At the time she met Shushann, Cecilia was just turning 30 and had been living with early-onset Parkinson’s for four years, although she had been experiencing symptoms for more than seven years.
“It was a very difficult time for me as I had not been able to reach acceptance of the illness and was living with constant mood swings, switching between states of severe depression, deep anger and total apathy,” said Cecilia.
“However, with Shushann’s professional support and her deep caring towards me, I learned that one can experience immeasurable suffering and still live life to the fullest.”
With Shushann’s encouragement, Cecilia began exercising and reconnected with her physical form, learning to love herself – both mind and body.
“I was able to endure great physical and mental suffering because Shushann reminded me of the resilience I always had, and she guided me to resort to my own inner strength. Now I see life as both an adventure and a privilege.”
40% of the timesupporting carers
15% of the time with family members
20% of the time on people with Parkinson’s
25% of the timecouncelling couples
8 Parkinson’s NSW Annual Report 2018/19
July 2019 is the 40th anniversary of Parkinson’s NSW.
Our organisation had its beginnings in Sydney when Don Gration was diagnosed with Parkinson’s. He and wife Joan found there were no sources of information about the disease except from his treating doctor. There was also no support or advice available from others in the same situation.
The couple recognised the need for a mutual self-help society and sought out like-minded people. Together they launched The Parkinson’s Syndrome Society of Australia.
Just three years later, The Parkinson’s Syndrome Society formed its first local area Support Group in Newcastle. Its mission was to disseminate information about Parkinson’s in its community, in ways that were most convenient for local people.
Today the remit of Parkinson’s NSW is broader, but still includes the original objectives of The Parkinson’s Syndrome Society. The Support Group model also endures; there are now 70 such groups across metropolitan, regional and rural NSW.
These Groups provide friendship, non-judgemental support and evidence-based advice for people diagnosed with Parkinson’s, their carers and family members.
Support Groups function within their local communities or geographic areas but they are not autonomous; they are part of Parkinson’s NSW and supported by employees of the organisation.
Parkinson’s NSW hosts a regular Support Group Conference featuring presentations on the latest research, advice on exercise and medication, and activities to facilitate networking and information exchanges between participants from different communities across the state.
The 2018 Support Group Conference in Sydney attracted more than 100 participants from 46 Groups.
There from the beginning and still vital
ServicesCommunity Engagement
Sustainability
Parkinson’s NSW Annual Report 2018/19 9
Evidence points to Support Group effectiveness
In 2018-19, Parkinson’s Specialist Nurse Vince Carroll began work on a local research project into the benefits and effectiveness of Support Groups for people living with Parkinson’s.
This research will be completed in the 2019-20 fiscal year.
A large body of work has already been done overseas on the value of peer support and self-care programs for people living with chronic illnesses.
It indicates that support groups can:
• Increase people’s knowledge about their disease
• Improve compliance with prescribed treatments
• Improve self-management of conditions
• Increase communication with health care professionals
• Create a culture of health and ability rather than a culture of illness and disability
• Enhance community access and social opportunities
• Benefit health care facilities by being more confident, knowledgeable patients who experience improved health outcomes while utilising fewer health care resources.
70Support Groups
4 specialist Carer Groups
1,400 participants in
Support Groups
More than
270meetings held
every year
An average of
9 Parkinson’s NSW
staff attend meetings each month
Compared with metropolitan areas, there is a higher prevalence of Parkinson’s in rural and remote areas. Poorer health outcomes for residents of these regional centres are the result of difficulties in accessing specialist and primary health support.
CEO Jo-Anne Reeves participated in a Leadership Forum at the World Parkinson Congress in Kyoto, Japan in June 2019.
She spoke on the challenges supporting people living with Parkinson’s in under-served regions of NSW and told the panel and audience that:
• 25 percent of the NSW population live in regional or remote areas. For every working age adult, there are six elderly people living in these areas. Therefore, the demographics of regional NSW are skewed towards the age group most likely to be diagnosed with Parkinson’s.
• Fewer than 10 neurologists practice in regional or remote areas of NSW – and that includes city-based neurologists who do fly-in fly-out clinics once a month.
• The average age of practicing neurologists in NSW is 51 years. A medical workforce survey found that more than 17% of non-metropolitan neurologists have plans to retire within the next 5 years.
A new nurse was appointed in Port Macquarie during the year under review, bringing the total number of community-based Parkinson’s Specialist Nurses to three.
They are based in Coffs Harbour covering the Coffs Harbour, Bellingen and Nambucca Local Government Areas (LGAs), in Port Macquarie covering the Port Macquarie-Hastings LGA, and Nowra covering the Kiama and Shoalhaven LGAs.
Negotiations on several more community nursing roles were ongoing throughout the year with Local Health Districts (LHDs) in areas of high need including Wagga Wagga, Tweed, Goulburn and Orange.
Bridging the community care gap
Nurses on the road
Cover geographic areas ranging from
1,000 to 4,000 square
kilometres each
Drive up to
2,000 kilometres every month
to support people living with Parkinson’s in their
homes, residential aged care facilities and hospitals
ServicesCommunity Engagement
10 Parkinson’s NSW Annual Report 2018/19
The President and CEO of Parkinson’s NSW advocated strongly for additional Parkinson’s Specialist Nurse funding from State and Federal Governments during the year under review.
During this period, they put the Parkinson’s NSW case in writing to 106 Members of Parliament and had more than 20 face-to-face meetings with Ministers and senior health bureaucrats.
This campaign was supported through the distribution of advocacy kits to Support Groups for use with their own local MPs, and outreach to regional print and radio media.
Advocacy will remain a priority in 2019-20.
The Research section of this report also details work being done by Charles Sturt University on behalf of Parkinson’s NSW to validate and identify the cost savings of the community-based nursing model.
Advocacy for nurse funding
Parkinson’s NSW Annual Report 2018/19 11
Lorraine and Bill Skeers had busy lives when Bill first began having troubles with his back. Bill was a coach driver and it was getting harder and harder to lift the bags in and out from under the bus.
It was around 16 years ago that he was diagnosed with Parkinson’s.
“It was a shock, but for a while he managed fairly well. Then things gradually got to a point about six years ago where it all got really hard. The tablets he was taking weren’t working and we were told there was nothing more that could be done.”
After some difficult years, that changed in 2016 when a locum doctor thought Bill could try a brand-new treatment – a drug called Duodopa.
At that time, Parkinson’s NSW Specialist Nurse Rachael was working in a previous role as a Clinical Nurse Educator on the Neuroscience Ward of St Vincent’s Hospital in Sydney.
“I had just received specialist training in the labour-intensive process of commencing the administration of Duodopa. It requires a great deal of communication between the patient, carer and nurse so I got to know Bill and Lorraine very well,” said Rachael.
“Bill was the first person to receive the new drug Duodopa. He walked out of the hospital on his own and we then had a good 12 months with lots of holidays which was brilliant.” said Lorraine.
Rachael and Lorraine had developed a friendship through the hospital experience and continued to stay in touch after Bill left St Vincent’s for ongoing support.
“I don’t know how I’d have got through all this without Rachael,” says Lorraine. “I do a lot of crying. But I can call Rachael and she tells me to keep my chin up, and gives me encouragement to keep going.”
A long-term patient, carer & nurse partnership
12 Parkinson’s NSW Annual Report 2018/19
Exercise is second only to medication in effectiveness for slowing the progression of Parkinson’s. Therefore, it is a priority of Parkinson’s NSW.
During the 2018-19 fiscal year our staff Exercise Physiologist led and coordinated with service delivery partners to deliver:
Exercise second only to medication
ServicesCommunity Engagement
More than
300different activities across the state
Exercise, art, dance and music classes for more than
800participants
Evaluations and recommendations of
127Parkinson’s-specific exercise providers
Development also began on a new Parkinson’s boxing exercise collaboration and a related train-the-trainer course. As of the end of the year, three pilot classes were running in Sydney and Coffs Harbour.
With a focus on delivering more easily accessible exercise instruction for people living with Parkinson’s, negotiations began on securing access to an international on-line program that can be delivered via Parkinson’s NSW digital and social platforms.
Both the boxing and online exercise collaborations are expected to be formalised and announced in the first half of fiscal 2019-20.
Work also began during the year under review on a manual and web content to educate Allied Health and exercise training staff on requirements and precautions around exercise for people living with Parkinson’s.
Parkinson’s NSW Annual Report 2018/19 13
In fiscal 2017-18, a new holistic education program was launched across NSW to meet the needs of people living with Parkinson’s, carers, families and friends.
The program was developed following consultation with Parkinson’s NSW Support Groups following initial test education events. During the year under review, this education program was further expanded and refined.
The past year also saw innovation in the form of new seminars developed to meet an emerging need in the aged care sector.
The Aged Care Quality and Safety Commission’s new Quality Standards commenced on 1 July 2018. In order to comply with the new standards, NSW residential aged care facilities required specialised training for support workers on meeting the unique needs of residents living with Parkinson’s.
Parkinson’s NSW created seminars to meet that demand and began test marketing late in 2018-19. As of the end of the year in review 11 aged care staff seminars had been delivered for 256 participants in ten locations.
The seminar content is expected to be refined and the program scaled up in 2019-20 with the involvement of Parkinson’s Specialist Nurses. There are also plans to explore demand for the seminars among support staff in prisons and residential mental health facilities.
Sharing the latest knowledge & advice
24seminars conducted
855 seminar attendees
361 attendees at GP
seminars
30attendees at newly diagnosed seminars
67 health professionals
presented at seminars
14 Parkinson’s NSW Annual Report 2018/19
Celebrating 40 Years of Parkinsons NSW
ServicesCommunity Engagement
1. Yamba Support Group 20092. Illawarra North Support Group at Australia’s first Unity Walk in 20083. Newcastle Support Group 20024. Stand By Me cover 20085. Bankstown Support Group at Australia’s first Unity Walk in 20086. Chinatown Bi-lingual Support Group fundraising dinner 20067. Cooma Support Group at Belgenny Farm 20128. Yass Parkinson’s Support Group members with H.E. Professor Marie Bashire AC (centre) and
Parkinson’s NSW President, Rod Irwin in 20049. Unity Walk participants 201210. Parkinson’s NSW Patron and Governor of NSW, H.E. Professor Marie Bashir AC with Faye
Moran (left) co-author of Ease the Burden, Find the Cure in 2004.
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8
5
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Parkinson’s NSW Annual Report 2018/19 15
ALERT
Stand By MeParkinson’s new south wales inc. newsletter – issue 104, spring 2008
Ease the Burden and Find a CureParkinson’s new south wales inc. newsletter – issue 104, spring 2008
Ease the Burden and Find a Cure
www.parkinsonsnsw.org.au
Pnsw has become aware of a company which is advertising treatment for PD based on cord blood stem cells in australia. we advise members that this approach is untested for both safety and efficacy in PD, and thus we do not recommend it. an article on this topic will feature in the next issue of sBM.
australia’s 1st unity walk for Parkinson’ssydney olympic Park, sunday 31 august 2008
unity walk Photos can be viewed – http://www.parkinsonsnsw.org.au/assets/attachments/events/unitywalk2008/
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1
2
4
9
10
16 Parkinson’s NSW Annual Report 2018/19
Over the past year, branding and marketing continued raising awareness of Parkinson’s and Parkinson’s NSW services, and encouraging contributions for fundraising and participation in events.
The Marketing team was strengthened through the addition of a full-time Communications Coordinator tasked with developing and enhancing content for existing magazines and newsletters, and digital and social media.
A Purpose was also added to communicate exactly what we do.
The InTouch newsletter for Support Group participants was redesigned during the year under review. Its content was also expanded and updated to better meet the needs of its audience.
Stand by Me continues to be our flagship publication for all stakeholders. Over the past year, more content of this magazine has been repurposed post-publication for digital and social media in order to reach a broader audience.
Social media and the Parkinson’s NSW web site have recorded significant growth.
There was 480 percent organic growth in email subscriptions over the fiscal year, with a retention rate of 95 percent.
Social channels also recorded significant growth:
Social media plays a key role in the communications strategy of Parkinson’s NSW. It allows us to connect with many of the family members, relatives and friends of people living with Parkinson’s – as well as a broad range of other stakeholders with an interest in Parkinson’s. They include Primary and Allied Health practitioners, researchers, political influencers and decision-makers, and health and aged care influencers and bureaucrats.
During the year, the Marketing & Digital and Fundraising teams worked together to trial a new concept raffle that was developed by a fundraising partner.
Raising awareness of Parkinson’s
BrandAwareness
Community Engagement
Sustainability
38%
66%
57%
Percentage increase
30 40 50 60 70
Parkinson’s NSW Annual Report 2018/19 17
50-50 Raffle tickets were sold through a secure, purpose-built web site at $10 each and the ‘pot’ was split equally between the winner and Parkinson’s NSW.
We set the first campaign over a 7-day period and the Raffle sold out in just 5 days. We identified that 40 percent of the top purchasers had never donated to Parkinson’s NSW before
This online Raffle was very effective at engaging non-traditional donors and further building the organisation’s digital profile.
“Thank you so much to Parkinson’s NSW. It is such a fabulous and exciting thing to have won this amount of money. I plan to give myself an 80th birthday present.
Without my win I couldn’t possibly have gone on this exciting holiday.” First 50-50 raffle winner.
Dear Family and Friends video
A compelling video titled Dear Family and Friends was created for Parkinson’s Awareness Month by the Parkinson’s NSW Marketing & Digital Team.
Its objective was to raise awareness of Parkinson’s by showing viewers what living with the disease really looks like.
Support Group participants Joanne, David, Robert, Dianne, James and Jane were shown looking wordlessly at the camera as key phrases from the famous Dear Family and Friends letter scrolled across the screen.
No money was spent on producing or promoting this video, but it made a significant impact. It was the single most popular Facebook post in April, delivering:
• A reach of 36,400 (the number of individual Facebook feeds it appeared on)
• 5,700 engagements (how many people liked or shared the video, or left a comment)
The Dear Family and Friends video can be viewed on Facebook or YouTube here:
www.facebook.com/parkinsonsnsw/videos/416747442460525/
https://www.youtube.com/watch?v=B4QHmRgL1RA
50-50 Raffle
18 Parkinson’s NSW Annual Report 2018/19
Parkinson’s NSW special events are important for raising awareness of Parkinson’s, supporting fundraising, developing community engagement, and providing social opportunities for people living with Parkinson’s, their carers, families and friends.
Two key events during the 2018-19 fiscal year were the Unity Walk in the Park 2018 and World Parkinson’s Day on 11 April 2018.
Unity Walk in the Park 2018
Unity Walk in the Park is the major annual fundraising initiative of Parkinson’s NSW to support vital research and services for people affected by Parkinson’s.
Over the past 11 years this event has attracted 16,700 participants who have helped Parkinson’s NSW raise more than $1,000,000.
The 2018 event attracted more than 1,300 participants in Sydney and Wollongong and – for the first time – nine regional and rural locations.
Raising awareness & building relationships
Harper Bernays | Webster Care | Festival Hire | Resolution X
Platform Sports | Sydney Festival | Motorola Solutions Australia | Elgood & Sons Printing
Grind n Press Coffee Crew | Inbocca | Sydney Park Kiosk | City of Sydney
Australian Army Band | Phly Crew | Kay Proudlove | Marry Me Gary | James Buster
Amplified Artistry | Illawarra Production Services | Cheryl Thompson Photographer
Bendigo Bank Oak Flats & Shellharbour Branch | Calderwood Christian School
Wollongong Lions Club | Body Dynamics
2,033 donations made
350 hours of volunteer work
36,250,000 steps taken
It involved over 70 volunteers and a range of sponsors – including cash sponsorships, in-kind donations and heavily discounted rates for various event services and prizes.
Our thanks go to the following sponsors for their support of Unity Walk in the Park
BrandAwareness
Community Engagement
Sustainability
Parkinson’s NSW Annual Report 2018/19 19
World Parkinson’s Day
Parkinson’s NSW and 24 Support Groups joined in 33 activities that built awareness and raised funds on World Parkinson’s Day and the following Parkinson’s Awareness Month in April.
The activities included information stands, craft stalls, quizzes, morning teas, lunches, a picnic, a cocktail party, and an awareness walk.
Parkinson’s NSW staff attended 26 of these activities. Support materials including 15,000 quiz card drinks coasters were distributed across NSW.
Activities included:
• A Morning Coffee Fundraiser hosted by the Griffith Support Group
• A craft stall organised by Newcastle Parkinson’s Support Group in the lobby of John Hunter Hospital
• An information stall staffed by Tomaree Support Group members in the Salamander Bay shopping centre
• The annual Shakin’ Cocktail Party hosted by Goulburn Support Group
• A quiz to test Parkinson’s knowledge in Parkinson’s NSW Sydney headquarters
• The James Parkinson Games – quiz – hosted by Coffs Harbour Support Group
• Picnic in the Park hosted by the Nepean Blue Mountains Support Group
• Pikelets for Parkinson’s in Nambucca
• Information and awareness stalls in Kiama, Hornsby, St Ives, Camden and Nowra
• An Awareness Walk organised by Port Macquarie Support Group
• A luncheon hosted by Yass Support Group
• An Ugly Tie Competition organised by Manly Pittwater Support Group
Activities by friends of Parkinson’s NSW included:
• A Smart Health luncheon
• A Shoalhaven Council barbeque
• David Shaves His Hair
• Busking for Parkinson’s
• Raising a Glass and Raising Funds by BWS Cootamundra
20 Parkinson’s NSW Annual Report 2018/19
Less than 10 percent of Parkinson’s NSW funding comes from government grants. Therefore, ongoing fundraising is essential to enable the uninterrupted delivery of services in support of the NSW Parkinson’s community.
Donations enable us to deliver services like the InfoLine, Counselling, Support Groups and community-based Parkinson’s Specialist Nursing free of charge to the consumer. Fundraising also underwrites our important annual Research Grants (see the Research section of this report for more information).
Donations of any size are welcome from individuals, charitable foundations and philanthropists. Some people choose to leave a gift in their Will to support future generations of people with Parkinson’s.
This section of the Parkinson’s NSW web site describes the many ways in which donations can be made and includes an online payment gateway.
https://www.parkinsonsnsw.org.au/support-us/donations/
During the year under review, Parkinson’s NSW became a Registered Service Provider of the National Disability Insurance (NDIS).
This means that in the coming 2019-20 fiscal year, it will begin delivering services to people living with Parkinson’s who have been funded by the NDIS.
The National Disability Insurance Agency fixes the prices of these services and funding is tied to the individual, not the organisation.
The fees charged by Parkinson’s NSW are a small supplemental source of funding, but the organisation will continue to primarily depend on donations to fund its services.
Donations in 2018-19
• More than 9,000 donations received
• $2,111,099 donated
• $69,896 donated by friends and organisations through individual fundraising
• 2,634 monthly donations made through regular giving program
• $521,564 was gifted by 10 testators through gifts in wills
Fuelling growth of services
Community Engagement
Sustainability
Parkinson’s NSW Annual Report 2018/19 21
Gifts in wills
Once again in 2018-19, a significant source of income for Parkinson’s NSW came from people who generously left us a bequest or a gift in their will.
A common theme for people who have left these gifts is some direct involvement with Parkinson’s in their lives. They have lived with Parkinson’s themselves, been a carer, or have known loved ones or friends who lived with the disease.
As a final act of compassion, these generous individuals left a legacy of continued care for those living with Parkinson’s.
There are a variety of ways in which people can leave a legacy, so their generosity lives on.
It is always wise to consult a solicitor first, but following are some suggested ways you can leave a bequest or gift in your will:
• Leaving a percentage of your estate to one or more nominated charities
• Leaving the whole of your estate to one or more nominated charities
• Dividing your estate between a nominated charity and family
• Leaving a specified sum of money to a nominated charity
• Leaving a specified sum of money to family and friends, with the remainder of your estate being left to a nominated charity or charities
• Leaving shares or property to a nominated charity or charities
• Leaving shares or property to family and friends, with the remainder of your estate being left to a nominated charity or charities
For more information on leaving Parkinson’s NSW a bequest or gift in your will, visit this page of our web site:
https://www.parkinsonsnsw.org.au/support-us/bequests/
Gifts in Wills 2018-2019
We would like to acknowledge the generosity and compassion of the
following members of the Parkinson’s NSW community who have passed away
and left gifts in their wills to Parkinson’s NSW.
Audrey Moana Bradley
Lorna Jean Eshuis
Dorothy May Juknaitis
Joan Aileen Lindsay
Margaret Edith Beatrice McDonald
Colleen Liela McCarron
Norma Dorothy Osborne
Peter John Sherack
Gifts in Wills via Trusts
The Norman Family Trust
The Kevin Williams Trust
Sustainability
22 Parkinson’s NSW Annual Report 2018/19
The purpose of Parkinson’s NSW is to connect people living with Parkinson’s with life-enhancing support and services.
In order to deliver on this promise to the Parkinson’s community of NSW we need evidence-based research – the bedrock for support and services that enable people to live healthier, happier lives.
During fiscal 2018-19, Parkinson’s NSW funded two distinct areas of research:
• Grants totalling $300,000 to four prominent researchers working on projects that enhance the quality of life of people living with Parkinson’s.
• A study by Charles Sturt University on the benefits and potential cost savings of the community-based Parkinson’s Specialist Nurse model.
Community-based Parkinson’s Nurse research project
Research into the Parkinson’s Specialist Nurse model was conducted throughout 2018-19 by the School of Nursing, Midwifery and Indigenous Health of Charles Sturt University (CSU).
The project – the first of its kind in Australia – was in its last stages at the end of the fiscal year. A final report will be published in the first fiscal quarter of 2019-20.
This research has global significance and was recognised for its promising progress to date with an invitation to present at the World Parkinson Congress in Kyoto in June 2018.
Stage 1 of the research was a comprehensive literature review.
Stage 2 involved an analysis of data and outcomes achieved by the Parkinson’s NSW nurse embedded in the Coffs Harbour community. This enabled a comparison with a different nursing model used in the Shoalhaven region.
This stage also measured the potential cost-savings to Government through this decentralised approach to supporting Parkinson’s patients.
The third stage of the research project involved interviewing people who participate in Parkinson’s NSW Support Groups in regional and rural areas of NSW.
This final stage identified why people affected by Parkinson’s attend Support Groups, how they benefit from participating, and what regional healthcare needs are currently not being met.
The results of this research project will be shared with all Support Groups, as well as General Practitioners, Neurologists, Allied Health professionals, Local Health Districts and State and Local Government.
Building a strong knowledge base
ServicesResearch Sustainability
Parkinson’s NSW Annual Report 2018/19 23
Research Grants totalling $300,000 were presented at the Parkinson’s NSW Support Group Conference in Sydney in October 2018.
The Grants support peer-reviewed research projects that enhance the quality of life of people living with Parkinson’s. The grants were for work on:
• The use of blood RNA biomarkers to measure the progression of Parkinson’s
• A behavioural and exercise program to improve safe mobility for people with Parkinson’s
• Enabling medication to alter only specific nerve cells in the brain to reduce Parkinson’s symptoms
• Monitoring gut microbiome changes to help improve the administration of therapies.
Leading Parkinson’s researchers, their publications and ongoing research projects were assessed by the Research Advisory Board of Parkinson’s NSW before the final recipients were selected.
Research Grants
24 Parkinson’s NSW Annual Report 2018/19
President David Veness
David Veness joined the Board as a non-metropolitan representative.
David was diagnosed with Parkinson’s eight years ago and immediately joined his local Support Goup in Bathurst.
David is retired and his background is in hospitality and banking.
Chair | Finance, Risk and Audit Jaimee Thompson
Jaimee Thompson has more than 20 years of audit and risk management experience and is the Chief Risk and Assurance Officer for Downer EDI.
Jaimee has a Bachelor of Business (Accounting) and a Bachelor of Computing. Resigned 13 September 2019.
Chair | Governance Committee Rodney Chaplin
Rodney Chaplin is the General Manager of Landis + Gyr’s Business in Australia and New Zealand.
Rodney has been a non-executive director of Parkinson’s NSW for more than three years and is the Chair of the Board Governance Committee. Resigned 24 September 2019.
Director Stephen Schiemer
Stephen Schiemer was elected to the Board of Parkinson’s NSW in October 2018. He is a fitness instructor and entrepreneur who has been living with Parkinson’s for the past eight years.
In addition to experiencing Parkinson’s himself, Stephen runs tailored fitness programs for other people living with the disease and has a Bachelor of Business.
Board of Directors
Organisational Development
Sustainability
Parkinson’s NSW Annual Report 2018/19 25
Director Edward Shepherd
Edward Shepherd was elected to the Board of Parkinson’s NSW in October 2018.
He has firsthand experience with Parkinson’s disease within his own family and is a carer, along with his father and five siblings.
He has 16 years of corporate experience in the public and private sectors.
Director Ramy Soussou
Ramy Soussou is the General Manager of Sales & Marketing for Red Energy and Lumo Energy – the retail businesses of Snowy Hydro Ltd.
Ramy also manages the Regulatory Affairs, Stakeholder Relations and Solar & Battery Storage teams for both businesses and has a Bachelor of Arts (Economics). Resigned 13 September 2019.
= AttendedP = Attended via phoneA = Apologies
Board Attendance
Board Meeting attendance record
Name Nov Feb May June
Rodney Chaplin A
Steve Schiemer
Colin Hall (maternity leave cover 3 May to 2 September 2019)
N/A N/A P P
Edward Shepherd P P
Ramy Soussou A P
Jaimee Thompson P Approved
leave
David Veness
Macquarie Hospital Building 17, 51 Wicks Road, North Ryde NSW 2113
1800 644 189 [email protected] www.parkinsonsnsw.org.au
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