From the CEO's desk with Stacey Thorpe

It’s been a huge few weeks at MND Queensland so I am delighted that the timing of this newsletter allows me to fill you in on some of the things that have been happening!

You have probably heard the words ‘MND Queensland is the only State Association not receiving State Government funding’ on numerous occasions. I’m almost certain that I have used those words more than any other sentence as it is an issue that we have been banging the drum over for years and have had very real concerns about the disadvantage this creates for Queenslanders with MND. Well, in May, that changed. The Queensland State Government committed to a $250,000 donation towards the vital work of MND Queensland.

This donation is a very clear endorsement of the vital work MND Queensland does and the model of service we have adopted. That model is the direct delivery of MND expert services through our multidisciplinary team that work exclusively with people with MND. We adopted that model because we know it is best practice and that people with MND live better for longer when they are supported in this way. Knowing that the Queensland Government agree that we are providing the best care for Queenslanders with MND, is extremely rewarding.

We are grateful for this recognition of the needs of Queenslanders with MND, their endorsement of our model of care and the financial contribution that will support our efforts into the future. But we won’t be silent now that we have the donation because the next step is to secure ongoing funding.

From my conversations with both the Premier, Annastacia Palaszczuk, and the Health Minister, Shannon Fentiman, I feel a sense of optimism that MND is on their radar, and we will continue our advocacy efforts to secure that much needed recurrent funding.

The other major development is the result from our recent audit. As a registered provider of NDIS services, MND Queensland’s activities are regulated by the NDIS Quality and Safeguards Commission. Our audit result confirmed that we are meeting all the NDIS practices standards and that we fully comply with the NDIS Code of Conduct.

The auditors highlighted the consistently positive feedback from our clients as the biggest strength of our organisation. This is really gratifying for all of us here at MND Queensland as we put Queenslanders impacted by MND at the centre of everything we do. I want to share with you some of the quotes from our clients that were included in our audit report.

“I really value their support”, “I have found they are responsive when things are rapidly changing for me and my care needs”, “I couldn’t wish for a better coordinator”, “They’re extremely helpful, I’m really happy with them”.

These are just a small selection of the wonderful things our clients have had to say about us and here is another one I wanted to mention, “I’m not in Brisbane, but they have been a great support remotely”. This one shows that distance does not get in the way of us being able to provide that much needed MND expert care and support but whilst I am very happy that we are able to support Queenslanders throughout the state, we do know that for many people, having someone local that they can speak with face to face is really important. And that is exactly why we already have an MND Advisor on the Gold Coast, why we’ve recently expanded to have a presence on the Sunshine Coast and why we are currently recruiting MND Advisors for Townsville and Cairns.

The last quote I’ll share is “I get all the support I need, and they always deliver on what they say they will do.” This is my favourite as it perfectly sums up what we should be doing and is my commitment to the MND community. MND Queensland will always take the time to understand what our community wants and needs and work tirelessly to find a way to deliver it!