I have done my fair share of complaining about the post code lottery of services and provision of care for those of us with Parkinson’s. However, this past weekend, a non Parkinson’s related incident resulted in three days of nonstop house visits from my GP, my district nurses, Parkinson’s nurse, local representative of Parkinson’s UK, physiotherapist, and phone calls from social services and other departments. Equipment has been arriving, more hours of help assigned, appointments have been arranged, concern is being expressed over how I’ve been allowed to slip through the cracks the way I have, and although it’s not going to make my medical condition any better, I’m finally beginning to feel that I might get the support that I was promised in the beginning over five years ago.
How did it take a non Parkinson’s accident to get the wheels in motion?
Hi @Artgeek, thank you for sharing this experience here.
It’s great to hear that support has been put in place, even though it’s frustrating that it took a non-Parkinson’s incident for things to move.
Feeling seen and supported is important, and it sounds like a lot of professionals have now recognised what you need.
We hope this marks a real turning point, and that the help continues in a way that supports you day to day. If you ever needed to speak to one of us, we’re here on freephone 0808 800 0303, and no question is too big or too small.
Thank you, it was the local Parkinson’s UK representative in my region who is probably the one who really got this ball rolling. I had the accident late on Sunday/Monday morning and she was scheduled to visit the next day. She was horrified when she saw how I was being swept under the carpet and made a few phone calls that really kicked ass!
That’s great to hear, and shows the impact that advocacy at the appropriate time can have. We’re glad the representative was able to step in and push for this support.
We hope this momentum continues and that the care in place makes things feel more manageable for you
