An assistant headteacher whose condition is worsening as he waits for official diagnosis and therapy is backing a charity’s call to urge the Government to establish a Neuro Taskforce.
Dave Culpan, 51, of Thornton-Cleveleys, started to suffer from long covid approximately two years ago before developing a shuffling gait and tremor in his right hand.
Fearing it was Parkinson's or Huntington's, David described how he was “very fortunate” to be able to pay for a private consultation, but fears that people less fortunate wait two years even for an initial consultation.
Currently signed off work as an assistant headteacher and unlikely to return to work due to his condition, Dave is awaiting an official diagnosis of functional neurological disorder (FND).
FND is a problem with the way the brain sends and receives signals, which can cause a variety of physical or neurological symptoms that can affect different parts of the body, rather than a structural disease process like a stroke.
Dave said: “The condition usually comes from acute childhood trauma or a significant life event but mine was due to being a workaholic, I used to work 70-to-80-hour weeks. Covid just triggered the FND in me.
“The strange thing about FND is that it's not a hardware fault – it’s software. There's nothing physically wrong with my nervous system or brain, but it’s as though my software has become corrupted. I need to learn to reprogramme myself.”
Dave has “good days and bad days”. On the bad days, which tend to happen twice a week, Dave struggles to speak and complete daily tasks such as making a cup of tea or a sandwich.
Even on good days when Dave can spend time on his vegetable plot or walking to the local shop, he still experiences tremors, a stammer and chronic fatigue.
His wife, Amanda, is only able to care for him in the very early mornings, evenings and weekends due to her full-time job.
The assistant head teacher is supporting The Neurological Alliance campaign to bring about much needed change for people affected by neurological conditions.
As Dave’s condition is intermittent, some days he can take care of himself whereas other days he cannot and relies on Amanda’s support. He does not qualify for additional support.
He is currently on the two-year long waiting list for neurorehabilitation, neuropsychology and speech and language therapy. However, the longer he waits, the harder recovery will be.
The Neurological Alliance handed over a 19,000-strong petition to the Department of Health and Social Care on Monday, June 5.
It called on the Government to back the one in six people affected by neurological conditions in the UK and calls for a UK-wide Neuro Taskforce to spearhead vital improvements in care and support.
Georgina Carr, chief executive of The Neurological Alliance, said: “Despite affecting millions of people and costing billions of pounds, neurological conditions are too often at the back of the queue.
"More than half of people who shared their experiences had experienced delays to routine specialist appointments in the last year and a majority hadn’t been asked about their mental wellbeing by a healthcare professional in the past three years.
"The message from people affected by neurological conditions is clear - this must change.”
The Neurological Alliance exhibited a brand-new artwork in Parliament, which featured pictures from hundreds of people affected by neurological conditions across the country.
It is hoped the artwork will help to raise awareness amongst MPs of the realities of living with a neurological condition.
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