Question and Answer Sheet


1Q1: Is it true that there is “significant doubt” about the “survivability” of Parkinson’s NSW?

No. The allegation about the “survivability” of Parkinson’s NSW is incorrect and absolutely without foundation.

Following our annual financial audit, we expect that Parkinson’s NSW will declare a profit for fiscal 2019-20, even in these unprecedented times. Although we are anticipating a loss on investments in the Parkinsons NSW Trust.

Less than 10 percent of Parkinson’s NSW funding comes from Government grants. As a modern, well-managed not-for-profit we are diversifying our fundraising strategies to build a stronger pipeline of bequest funding, balanced by new revenue streams from digital fundraising and telemarketing.

We also have in place a very capable, high-performing Board comprising professionals with a variety of commercial and not-for-profit skills that include:

  • Professional fundraising
  • Law, finance, and risk management for not-for-profits
  • Health and exercise for people living with Parkinson’s
  • Service delivery, including quality and project management
  • Healthcare management, including health law and establishment of clinical services in areas of need
  • Support Group establishment and support

Board members engage in robust discussions about the future growth of Parkinson’s NSW, develop strategy and rigorously monitor performance.

See full Board member biographies on the Parkinson’s NSW web site here.

2Q2: Why have administration and salary expenses increased significantly over the past three years?

Parkinson’s NSW is a service delivery organisation that aims to improve the wellbeing of people living with Parkinson’s now, while the search for a cure continues.

It achieves this by delivering and connecting people living with Parkinson’s with life-enhancing support and services. Service delivery requires qualified and experienced staff and they need to be paid award rates.

Service delivery of this quality cannot be delivered by volunteers.

Over the past three years, Parkinson’s NSW has grown from 10 predominantly part-time staff to 21 people including the Senior Leadership Team. Of these, nine are full time employees and the others are part-time.

The experience and qualifications of today’s team members are of a higher calibre and each individual has multiple roles.

Our service delivery team now includes highly qualified and Parkinson’s-experienced nurses, counsellors, and professional educators – as well as NDIS Advocacy, NDIS Support Coordination, and Support Group specialists.

Directly supporting these service delivery professionals, we have a database manager, and two-person fundraising and marketing teams.

Their work directly enables service delivery, funding of services, education and public engagement around Parkinson’s, Government advocacy and development and retention of service delivery partners and Support Groups.

Please also the response to Question 4 (below) which details the volume and sophistication of service delivery by Parkinson’s NSW.

As noted above, there is a direct correlation between Salaries and Employment Costs, and service delivery to the NSW Parkinson’s community. We acknowledge that there has been a 34 percent increase in Salaries and Employment Costs from June 2017 to June 2020.

In line with the staff increases noted above, over the same period there has been an increase in the scope and number of services delivered, as well as the number of people who receive those services.

In addition, geographic coverage has been expanded to provide better support to people living with Parkinson’s in regional and rural areas – correcting the previous administration’s skew towards the Sydney metropolitan area.

3Q3: The letter notes that Parkinson’s NSW expenses have not included spending on research. Is this correct?

No. Parkinson’s NSW commissioned Charles Sturt University to conduct multi-year, empirical research into the role and effectiveness of community-based Parkinson’s Specialist Nurses in improving quality of life for people living with Parkinson’s in regional and rural areas.

Another ongoing research project is examining the most effective structure and leadership models for Support Groups to improve outcomes for participants. Work is also underway on research evaluating the 1800 InfoLine to optimise the timeliness and quality of its service delivery by Parkinson’s Registered Nurses.

Other research is funded by the Parkinson’s NSW Trust.

The Trust has a separate Board and focuses on investment and growth of bequests made in favour of the Trust for the benefit of people living with Parkinson’s.

The Trust has in the past made annual grants to Parkinson’s NSW to support research which shows promise for improving the lives of people living with Parkinson’s now, as we continue the search for a cure.

4Q4: Is it true that money received from bequests has “not been spent on service provision”?

No. This is untrue and without foundation.

Parkinson’s NSW has just celebrated its 40th year of service delivery and support for the state’s Parkinson’s community. Service delivery in the past financial year reached record highs, as evidenced by:

  • More than 9,000 telephone and email consultations handled by the Parkinson’s Registered Nurses who staff the InfoLine.
  • More than 2,500 consultations performed by community-based Parkinson’s Specialist Nurses.
  • The appointment of an additional Parkinson’s Specialist Nurse in Coffs Harbour to grow that position from a 0.5 Full Time Equivalent Role to a fully staffed role.
  • The appointment of a new Parkinson’s Specialist Nurse in the Tweed region.
  • A total of 292 people living with Parkinson’s were guided through the complexities of applying for funding from the National Disability Insurance Scheme by our NDIS Nurse Advocate. Successful applications for the year totalled 115.
  • More than 500 consultations were undertaken by our specialised Parkinson’s Counsellors to support people living with Parkinson’s, partners, and family members.
  • Sixteen education seminars were developed and delivered for consumers, Allied Health and Aged Care professionals. This number is lower than previous years due to the impact of COVID-19 restrictions, but face-to-face training is now being supplemented by online education modules and public awareness campaigns.
  • Twenty new Support Groups were established over the past year, bringing the current network total to 91 Groups. This includes specialised groups for carers, people living with DBS therapy, and people living with Young Onset Parkinson’s. There are also separate online Support Groups and regional hubs have been established to encourage cross-communication between Groups.
5Q5: Is it correct to say that “Management seems to have adopted an approach of going it alone”? And is the example of the separation from Parkinson’s Australia a valid one?

Neither of these assertions is correct.

The Senior Leadership Team of Parkinson’s NSW does not have a policy of ‘going it alone’. It does have a policy of rigorously evaluating the benefits of potential partnerships with its stakeholders.

In the case of external exercise providers, for example, we have found that the hourly dollar figures proposed for participants living with Parkinson’s are above market rates and outside the means of many. Therefore, we have sought more cost-effective solutions.

The split from Parkinson’s Australia was driven by a lack of results, consultation, and transparency from that partnership over a 14-year period. The Board therefore decided that the nearly $50,000 per year in annual fees paid to Parkinson’s Australia would be better spent on direct service provision by Parkinson’s NSW.

For additional perspective, it is useful to note that Parkinson’s Victoria split from Parkinson’s Australia in 2018 and it is our understanding that other States are also reconsidering their membership of the organisation.

The Parkinson’s NSW Board did not take this decision lightly and consulted with Parkinson’s Victoria prior to the split. We are also in the process of forming a close alliance with Parkinson’s Victoria – which would then leverage the resources of Australia’s two largest and most active Parkinson’s organisations.

Parkinson’s NSW also enjoys a close relationship with Parkinson’s South Australia – for which we provided InfoLine services for a 6-month period while it was restructuring. We also work closely with Parkinson’s Tasmania, Western Australia, and Queensland.

Parkinson’s NSW does not “go it alone” in other key sector relationships either:

  • The CEO of Parkinson’s NSW is on the World Parkinson Congress (WPC) Leadership Executive and Chairs a Committee made up of CEOs from around the world. She also presented at the last World Parkinson Congress Leadership Forum on Underserved Communities.
  • Parkinson’s NSW monitors and evaluates the research output of institutions such as the Garvan Institute (which has a very broad remit of which Parkinson’s is only a part) and the Australian Parkinson’s Mission which works on a specific project under the Garvan Institute exploring the repurposing of drugs.
  • Our Parkinson’s Registered Nurses and Parkinson’s Specialist Nurses are members of the Australasian Neurological Nurses Association (ANNA), the Movement Disorder Society of Australia and New Zealand, and the International Movement Disorder Society.
  • Parkinson’s NSW maintains relationships with, undertakes joint projects (such as Telehealth) with, and refers patients to leading neurologists and researchers.
6Q6: The letter states “Fundraising, without bequests, has only increased $556,000 or 57%” Is this significant?

It is unclear how this figure has been derived. However, a 57% increase is something to celebrate as it is highly unlikely to ever receive this rate of return on any investment strategy.

7Q7: The writer says it is “reckless” to continue the current 5-year plan to build donations based on the results obtained after 3 years. Is this an accurate assessment?

This is not accurate and is based on incorrect assumptions.

In early 2017 when the current CEO took office, the Parkinson’s NSW database had just 1,399 supporters who had made recent donations. (This is a very low number by fundraising standards).

Many of these generous supporters were living with the costly burden of a Parkinson’s diagnosis, while essentially financing the organisation by themselves.

Therefore a 5-year plan was developed to build the supporter database and diversify sources of funding to substantially grow the base.

Prior to undertaking the 5-year plan, a 6-month evaluation was undertaken and reviewed by the Board to ensure that the proposed telemarketing program would be viable. Following Board approval of the outcomes of the evaluation, the program was fully implemented in fiscal 2018-19.

As of the end of fiscal 2019-20 (2.5 years into the program), there are more than 8,500 people actively supporting the work of Parkinson’s NSW – including 4,000 new givers sourced via the telemarketing program.

The supporter development plan is meeting all milestones, which are reviewed and reported regularly. The milestones were set in the knowledge that a major development program like this takes time to build, cleanse and test its data, so more cumulative results are to be expected after the 3-year mark.

Tracking includes fortnightly progress meetings, regular training of the fundraisers involved, reports to the Board and the Parkinson’s community and – most importantly – reviews of any discrepancies between the agreed milestones and actual budgets and timeframes.

8Q8: Is it true what the letter says: that Parkinson’s NSW has failed to secure a significant corporate sponsor since Bendigo Bank?

Bendigo Bank ceased it’s corporate sponsorship of Parkinson’s NSW in 2015. Since that time Parkinson’s NSW Strategy has involved building a broader network of supporters and finding within this network those who have the capacity to give gifts or connections to other funding sources.

However, we welcome any suggestions or links to realistic sponsorship opportunities.

9Q9: The letter suggests that Parkinson’s NSW pushed forward “recklessly” with its Sydney Morning Herald mail out in the midst of a pandemic and this was “…almost certainly a waste of money.” Is this correct?

No, it is incorrect.

The Sydney Morning Herald campaign involved the insert of donation envelopes into a Monday edition of the paper to coincide with World Parkinson’s Day in April 2020.

The campaign was booked and paid for in late 2019 following the success of a similar campaign in June 2019. We could not anticipate that less than two weeks prior to this campaign launch, the State would be in shutdown. Given the timing and cancellation terms of the contract with the Sydney Morning Herald, there was no possibility to withdraw the campaign at such short notice.

Despite the unusual circumstances, the campaign acquired 148 new supporters and income will exceed costs by the end of fiscal 2020-21.

10Q10: Is it true that there is “significant doubt” about the “reputation” of Parkinson’s NSW?

No. The comment about the reputation of Parkinson’s NSW is incorrect and absolutely without foundation.

Like all modern organisations, Parkinson’s NSW has multiple communications channels and monitoring systems to track feedback and reputational issues. Results are routinely communicated to the Board so Members can monitor the reputational health of the organisation. No significant issues have been identified.

The Board has also instituted a reputation and requirements survey which will be periodically conducted as another tracker of both potential issues and stakeholder needs.

11Q11: Is what the letter says about Support Groups true? “…many in Support Groups do not feel they are included and listened to.”?

This is a misleading generalisation. We are in daily contact with Support Groups of many different sizes and cultures in metropolitan and regional NSW.

During these email, phone and video-chat conversations, Support Groups ask for help in attracting more members from within their communities, support in advocating for a local Parkinson’s Specialist Nurse, information for members – as well as sharing their joys and frustrations.

We also hold regularly Support Group Conferences which are attended by representatives from Groups across NSW metropolitan, regional and rural areas. These Conferences include multiple brainstorming and Q&A sessions during which Support Group participants can engage directly with Board members, the Senior Leadership Team, and the people who deliver services and supports for them.

There has also been a period of adjustment to reporting and governance requirements imposed by the Australian Tax Office, the Australian Charities Not-for-profits Commission and Work Health and Safety legislation.

However, all of the above are part of the day-to-day requirements and operations of a Support Group and we do not have any evidence of “many” people not feeling included and listened to.

In fact, through our publications – including newsletters specifically developed for Support Groups – electronic direct mails, telephone, and video-chat outreach we actively, frequently solicit engagement and feedback from Support Groups.

12Q12: Is it an issue that “…many in the Support Groups are not even Members of PNSW”?

No, this is not an issue at all. Neither Membership nor participation in a Support Group are a requirement for receiving services and support from Parkinson’s NSW.

This was not the case under the past management of the organisation when Membership was a de facto requirement for receiving services from Parkinson’s NSW. However, since 2017, the Board and Senior Leadership Team of Parkinson’s NSW have embraced inclusion and the imperative to deliver services that meet the needs of the entire Parkinson’s NSW community.

These services are delivered both directly and through dedicated resources that enable peer support for people living with Parkinson’s and caregivers via a network of 91 Support Groups.

Over the years, under multiple Boards and Leadership Teams, many overlapping forms of Membership have evolved – including Life Membership, Honorary Membership, Financial Membership, etc.

There is now so much duplication and confusion around the concept of Membership that the current Board has commissioned an external consultant to re-evaluate the Membership structure, remove duplication and make it more transparent.

The current Members and other stakeholders will be consulted during this process and the outcomes widely communicated.