Our focus over the past two years has been to bed down a new leadership team and refine our service offerings to meet real world needs within the bounds of finances dependent on charitable fundraising.  

During this refinement process, we strengthened our technology platforms and put a stronger focus on tracking and measuring performance in each service area, in real time. This has provided us with valuable data for investment and performance planning. 

We identified areas where operating expenses could be reduced without impacting delivery of our core services. It also led to us analysing diminishing returns from our venture into NDIS Support Coordination service provision, which led us to withdraw from that area.  

However we have continued with our NDIS Advocacy offering which is key for our cohort of people living with Early Onset Parkinson’s. 

Over the past fiscal year we have reduced expenses by 9.7 percent – an even greater reduction than was achieved in the prior year. This has now positioned us to make significant investments in growing and strengthening both sources of revenue and services to our key stakeholders.  

These ongoing investments include: 

• More resources committed to community fundraising, which along with bequests, is a major source of revenue for this organisation. I should also mention that bequest notifications are significantly up this year compared to the previous year. We are currently working through the legalities of establishing how much those bequests will yield for the organisation, and how we can best honour the intentions of the bequestors.  

• More focus on State and Federal Government advocacy with the objective of dramatically boosting the funding of Parkinson’s NSW from these sources. This effort has included commissioning a professional grant writer to develop a compelling ask for the 2025-2026 State Budget. This was submitted earlier this month, well ahead of schedule. 

Parkinson’s NSW had its beginnings in 1979 when a Sydney man diagnosed with Parkinson’s and his wife were unable to find any sources of reliable information or support, apart from his doctor. 

They formed The Parkinson’s Syndrome Society of Australia. Its objectives were defined as: 

• To help and encourage patients, carers and relatives with the issues arising from Parkinson’s. 

• To collect and disseminate information on Parkinson’s. 

• To share knowledge of the Society and Parkinson’s with the public and to encourage research into the causes of Parkinson’s.  

Parkinson’s NSW remains true to its roots and these objectives remain the basis of our value proposition today.  

That is to be a focused source of information, evidence-based advice, and connection with services to support people living with Parkinson’s, care partners and family members. 

They are our key stakeholders, along with General Practitioners, Movement Disorder Neurologists, generalist and Parkinson’s Registered Nurses (in Local Health Districts, Primary Health Networks, and metro and regional hospitals), external service providers – particularly in Aged Care and Allied Health – and researchers engaged in Parkinson’s-related projects.   

We also have strong relationships with other state-based Parkinson’s organisations and were a founding member of the National Parkinson’s Alliance which was launched early in this calendar year with a summit in Canberra in March. It was formally established as an entity this fiscal year in July.  

Our inner circle of customers are people living with Parkinson’s (of all ages and at all stages of the disease), their care partners and families. This condition does not discriminate. 

The next level of customers are the communities in which those people live (where we strive to raise awareness), and the providers of key services such as GPs and Movement Disorder Neurologists, Nurses, Allied Health practitioners and Aged Care support workers. 

We do know our customers because of our frequency of contact with them face to face through Support Groups and education, as well as daily phone, digital and social media interactions. 

A few years ago we implemented a new Customer Relationship Management system as part of an organisation-wide digital and data transformation framework.  

This system was an all-encompassing solution to enhance data collection and analysis to assist in making informed business decisions. This has given us deeper insights into client needs and the opportunity to optimise our services.  

We also worked with data specialists to assist with systems integration and change management. Our aim is to be able to once again engage with these data specialists in the next phase of the data application and segmentation – either in the new calendar year or fiscal 2026, dependent on funding.   

Also, Support Groups have always been a valuable sounding board for us, and we stay in touch by making frequent in-person visits to meetings – as well as by working with a formal Support Group Advisory Committee which comprises a variety of Support Group leadership team members from across the State.  

We also do surveys of Support Group participants’ needs and preferences and reach out to them on a monthly basis with opportunities to participate in research.  

This ongoing liaison, along with extensive information harvested by our data collection and analysis, means we do indeed have very clear ideas on the services that need to be offered, and what impact they are having. 

We understand and appreciate the different needs of this growing cohort of our community.  

Our connections to carers are through the 1800 InfoLine service where they frequently call for information and advice, and through their participation –  along with the person they are supporting – in the Parkinson’s NSW Support Group network. 

In some areas and online, there are also separate Support Groups for carers. Also the Parkinson’s NSW Counsellors are of significant assistance to carers as they navigate their day-to-day challenges. We particularly advise on self-care, conflict resolution, and grief and loss for carers.    

We also have a dedicated Carers Chat online program that is facilitated by Parkinson’s NSW counsellors and our Support Group coordinator. 

The 1800 InfoLine team includes a qualified Social Worker as well Parkinson’s Registered Nurses and an Allied Health practitioner with extensive experience in community pharmacy.  

In addition to providing a first line of advice and support, this team can also connect people who feel they are being stigmatised with the Parkinson’s NSW Counselling team.  

Should the person affected decide to take legal or administrative action, these Parkinson’s NSW supports could continue as they work through that process. 

This organisation also undertakes extensive advocacy work and awareness raising through local Support Groups, social media, our web site, events and campaigns. We are also a founding member of the National Parkinson’s Alliance which advocates for the community on a larger scale. A key priority of this organisation is reducing stigma around Parkinson’s.  

Education is also particularly important. Parkinson’s NSW conducts education across the state for consumers, and Primary and Allied Health professionals – in addition to online training modules. 

Over the past year our online modules have upskilled more than 550 Allied Health professionals, and we have trained 87 Aged Care support workers in face-to-face sessions. This is in addition to Community Information seminars which raised the awareness of more than 340 participants across the state.  

There is also a high degree of collaboration with other state-based Parkinson’s bodies around issues facing our respective communities, and with a wide range of institutions and individuals conducting research into all aspects of the Parkinsons experience.