4 minute read
FROM THE CEO'S DESK WITH STACEY THORPE
If you read my article in the last newsletter, you’ll be aware that we were awaiting this year’s State budget with bated breath following a huge letter writing campaign from our community. We had genuine reason to be optimistic that, for the first time, the budget would contain some much-needed funds for MND Queensland. This optimism grew from the positive conversations we’d had with many Government MP’s and the public show of support from a couple of key Ministers and the icing on the cake was my invitation to the confidential budget briefing.
I arrived at the Queensland Parliament on the day the budget was released, full of hope and with a very different version of this article being written in my mind. We were going to be able to do so much more for Queenslanders impacted by MND, it was a genuinely exciting time! So, imagine my devastation, and if I’m being really honest – outrage - when there was no mention of MND Queensland in the announcement. I rifled through the budget papers becoming increasingly desperate and incredulous but there was nothing to be found. Numerous phone conversations with people in the Department of Health and the offices of some other supportive MP’s, led to the confirmation I had been dreading. Not a penny of recurrent funding had been allocated to MND Queensland!
The disbelief lasted for days, only to be replaced by a strong sense of guilt. I feel that I owe every member of our MND community an apology. I said in my last column that we’d given it our all, and we came up short. And for that, I’m genuinely sorry.
This disappointment was followed just days later by the news that FightMND had declined the grant applications we submitted as part of their commitment to funding care. These applications were to fund the purchase of equipment to loan to people with MND and to fund our Allied Health Services for Queenslanders over 65, not eligible for the NDIS. Both are very much needed, and I know they would have been highly valued by our community, but again we didn’t get a penny!
BUT if there is one thing that the MND community has taught me, it is that we ‘never give up’. And so, we will not let these setbacks get us down. We get straight back up and we keep fighting. We continue to have ‘hope’ and we continue to work hard for the outcomes that our community deserves.
It helped that I had the privilege of attending our annual MND Tribute night soon after those events. And anybody that has ever attended that event will know that you can’t help but feel buoyed by the strength of people impacted by MND. It was such a touching occasion and a timely reminder that I could not waste a moment feeling sorry or guilty and instead needed to revisit the strategy and keep calling, loudly, for the attention from the State Government that our community deserves.
And in the meantime, we will continue to focus on supporting our community in every way we can. We can’t do it without your ongoing support though, so I have two asks.
If you are a person with MND that is funded by the NDIS please consider using MND Queensland to provide your services. Not only are we the only organisation providing direct services exclusively to people with MNDs, and as a result our MND experience is unrivalled, we are also the only organisation who invest funds received from delivering these services straight back into the MND community.
If you wish to support Queenslanders living with MND now, please donate directly to MND Queensland. If you want your donations to go to research, we respect that. Finding a cure is the ultimate goal. Any funds donated to us for the purposes of research will and should go to research. However, MND Queensland is dedicated to providing care to those Queenslanders living with MND right now and into the future. This is our area of expertise and we know those people need our help! If you want to help too, you can do so by attending our events, donating directly to our cause or getting your workplaces involved in supporting the organisation.
Thank you. I very much hope that I will have more positive news to share with you in my next newsletter!
