What clients think about Parkinson’s NSW

The results of the 2020 Parkinson’s NSW Client Satisfaction Survey are in – and overall, the news is good. These accompanying infographics tell the story, but here is some additional background on the Survey. Here are the actions we plan, based on what we have learned from the Survey.


Why conduct a survey?

So the Parkinson’s NSW management and Board can regularly gather feedback from clients (users of our services) and the services they have accessed.

It will assist with continuous improvement of current services, informing the development of new services, building an evidence base and providing a baseline for annual comparisons.

A note about COVID-19

This year’s survey was conducted during COVID-19 and this may have had an impact on the results. Changes made in response to COVID could have an influence on shaping future service delivery.

Survey design, confidentiality, and approach

The survey was designed to ensure consistent and relevant questions were asked across each of the services offered by Parkinson’s NSW.

Several general questions were asked about Parkinson’s NSW as an organisation. The aim of these questions was to obtain feedback on areas of strength and how the organisation could better meet the needs of clients.

The survey was tested with a small number of clients prior to distribution. This was to ensure the survey was fit for purpose, easy to complete and appropriate for the respondent group.

To ensure that respondents felt secure in providing honest feedback, a third-party organisation was engaged to design, manage, and analyse the data provided. All feedback was de-identified before being shared with the Parkinson’s Board and Leadership Team.

Survey distribution method

The survey was constructed in Survey Monkey. Clients had access to the online survey via an email link.

There was no paper survey available, but clients had the option to call a staff member to complete a survey over the phone if they preferred. No clients availed themselves of this option.

Number of people invited to participate

1,445 clients from the Parkinson’s NSW database were sent an email inviting them to complete this survey on 28 August. A follow up reminder email was sent on 9 September to 1,389 clients.

Twenty surveys “bounced”, therefore 1,425 clients received the survey. Of these, 725 clients did not open the email.

Response data

When the survey closed on 17 September, 282 responses had been received.

This is a response rate of 20% for the 1,425 successfully delivered emails. To put this in context, the usual response rates for external surveys range from 10% to 15%. The Parkinson’s NSW Client Satisfaction Survey response was therefore higher than average.


1. The 49% response to the question about I am aware of Parkinson’s NSW plans for the future indicate that we must increase the frequency of communications around our Strategic 5-year Plan and what is means to the people we support.

We will also remind people that there are multiple channels for Members and Support Group participants to ask questions about this topic, and publish questions asked and answered so others can share the information.

2. While the 68% response to Parkinson’s NSW has had a positive impact on my life is positive, we will do more to share the real life stories of people who have been supported by Parkinson’s NSW and what the outcomes have been.

We will also undertake more consultation with consumers about services that could be added or improved to upgrade the impact we are having on their lives.

3. The questions with scores in the 70% to 80% range indicate a positive sentiment around consultation, connection, and trust in Parkinson’s NSW. However, they also show there is room for improvement.

As a follow-on from this survey, we will approach Members and Support Group participants for more specific information on what we can do to improve their feelings of connection and trust, and how we can consult more.

4. The questions scoring more than 80% about open communication, timely feedback and positive interactions with Parkinson’s NSW show that we already have in place the communications channels and openness that will enable us to learn more from our clients in response to the questions noted in sections 1, 2 and 3 above.

5. The Parkinson’s Specialist Nurse Service (community-based Parkinson’s Specialist Nurses) received the highest possible scores for Professionalism and Willing to Recommend this service to others.

This further validates the findings of research conducted by Parkinson’s NSW and Charles Sturt University over the past two years. The current model clearly meets the needs of clients in regional and rural areas as well as NSW Government Local Health Districts.

We will continue to advocate strongly – ideally with the involvement of Support Groups and individuals living with Parkinson’s – at both State and Federal levels for more community-based Parkinsons Specialist Nurses.

We will also explore new applications of the Specialist Nurse model – particularly around their involvement in telehealth for people living in underserved areas who lack access to Neurologists.

6. Results show that sentiment among Support Group participants is very positive – they feel their Groups are respectful and responsive to their needs. Therefore, we will continue to support and refine the current Support Group model.

However, we also learned from the 2019-20 Annual Report that more focus is required on governance to ensure all Groups comply with the Australian Charities and Not-for-profits Commission requirements.

Auditors this year gave a Qualified Opinion on our financial accounts because of a lack of transparency around the banking and financial reporting activities of individual Support Groups.

A Qualified Opinion is a black mark on our record which can attract the attention of the Australian Charities and Not-for-profits Commission and put our License to Fundraise at risk. Without this license, Parkinson’s NSW could not continue to operate and provide services.

7. The Parkinson’s NSW InfoLine service received very positive feedback, indicating that the current model of staffing the service with highly qualified and experienced Registered Nurses (not volunteers) should continue.

8. The importance of continued responsiveness and the availability of the latest information were made clear in responses to Education and Counselling. Therefore, this focus will continue – particularly as we are now developing more online education options and have grown our Counselling resources, as well as delivering them through multiple channels including video-chat services.