Just five years ago, 40-year old Luke Truscott began to experience some strange and troubling symptoms — one of his hands kept locking and he often had the feeling of pins and needles in his arm and hand.
The symptoms persisted for two years and during this time Luke searched everywhere for answers. Finally, after seeing Professor Elsdon Storey in 2016, Luke was diagnosed with Neuronal Intranuclear Inclusional Disease (NIID), a progressive and exceptionally rare neurodegenerative disorder that affects the nervous system.
Now, three years on from his diagnosis, Luke deals graciously with the increasingly painful and debilitating effects of the disease. “Neither of my legs work and I have a lot of pain through them — it feels like I’m walking on broken glass.”
Mercy Palliative Care client Luke Truscott with his mother and carer, Sandra.
While the disease has taken its toll on both Luke and Sandra — his mother and carer — Mercy Palliative Care’s 24-hour specialist service has helped to lift the burden.
Launched on 9 April 2018, the award-winning service provides every patient with access to a palliative care nurse, accompanied by a personal care worker, at any time of day or night. The specialised staff visit palliative care patients in their home and assist them with pain management and other distressing symptoms.
Mercy Palliative Care nurses visit Luke every couple of weeks to make sure his pain is under control and arrange any other support he needs. They also coordinate medications and appointments with other health providers, such as his GP. “I feel very safe and secure with all of the nurses,” says Luke. “I would be lost without them, that’s for sure.”
Most comforting of all to Luke and Sandra is knowing that the prompt, expert and compassionate support of the Mercy Palliative Care team can be called upon whenever they need it. “I just have to ring and they come straight away,” says Sandra.
I would be lost without them
Before the launch of the service, clients and carers would often be waiting for long periods on the phone just to get some advice and help.
“Previously I would be on hold for half an hour. Now I get put straight through to the palliative care nurse,” says Sandra. “They’re an excellent service.”
With the help of the palliative care nurses, Luke is now free to keep doing some of the things he enjoys, like watching the football and cricket. Before the onset of the disease, he worked as a motor mechanic and spent much of his spare time racing cars — an activity he greatly misses. He became very accomplished in the sport and was quite close to competing at a semi-professional level. “But it wasn’t meant to be,” says Luke. “But what is meant to be is me being here now and doing my best.”
The Mercy Palliative Care 24-hour specialist palliative care service won the 2018 Catholic Health Australia Award for Outreach Healthcare and is a finalist in the 2019 National Palliative Care Awards for Innovation in Palliative Care.
Last reviewed October 24, 2019.