Before his eventual diagnosis, Nick first saw a GP in April 2020, who suspected his issues could be linked to a muscular problem and advised him to get some rest.
Then, in 2021, after seeing no improvement, he had a full spinal MRI scan, which he was told did not show anything concerning.
The following year, in late 2022, he had an appointment with a neurologist at Ipswich Hospital, who referred him back to his GP for long-term nerve damage.
“Time isn’t really of the essence for MND because there aren’t really any treatments, and time doesn’t help in terms of treatment,” he said.
“Twelve to 18 months is usually how long it takes for people with MND to get a diagnosis, and people used to say to me, ‘wasn’t I really cross that it took so long’.
“But I don’t reflect on it, and it doesn’t irritate me. If I’ve got a limited amount of time, the last thing I want to spend my time doing is getting agitated about it.”
Catherine Morgan, chief nurse at East Suffolk and North Essex NHS Foundation Trust, which runs Ipswich Hospital, said: “We appreciate how difficult it can be for patients who are in the process of waiting for a diagnosis, particularly if they are in pain and discomfort.
“Our teams do everything they can to provide timely, high-quality, compassionate care and treatment for all our patients.
“We’re committed to listening and learning from feedback shared by our patients and their families through our dedicated Patient Advice and Liaison Service (PALS) team.”
The Integrated Care Board were contacted for comment.