L-R: Dave Culpan and Amanda Culpan
A senior teacher from the Blackpool area 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 in Lancashire, 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 head teacher and unlikely to return to work due to his condition, Dave is awaiting an official diagnosis of functional neurological disorder (FND).
He 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.
The petition was a result of The Neurological Alliance’s 2022 ‘My Neuro Survey’ completed by more than 8,500 people affected by neurological conditions. It exposed significant shortfalls in mental wellbeing support, delays to accessing vital treatment and care and a lack of information and support at diagnosis.
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.”
Together with the petition, 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.
Georgina added: “We must not ignore the fact that one in six people live with a neurological condition and many are not receiving the care and support they need.
“We stand united with over 100 organisations and 19,000 people to take immediate action. We urge governments across the UK to establish a Neuro Taskforce to address these unacceptable gaps in care and support for people with neurological conditions and deliver real change.”
A UK-wide Neuro Taskforce would make a real difference by making sure everyone affected by neurological conditions has access to the right care at the right time and the workforce to support them. It would provide a framework to support greater collaboration and sharing of best practice in the approaches taken to tackle common problems. Fundamentally, and most importantly, it would help to show that governments across the UK are listening to people affected by neurological conditions.
Dr Arani Nitkunan, Consultant Neurologist, said: “My colleagues and I see the devastating impact neurological conditions can have every day. Despite our best efforts to provide the best support for everyone, we are overstretched and overlooked by commissioners. Ensuring neurological conditions are tackled through a Neuro Taskforce would help us go further and mean that people with neurological conditions and services like mine are listened to at the highest forms of Government.”
The Neurological Alliance is a coalition of over 90 organisations working together to improve services for the 1 in 6 people in the UK who live with a neurological condition and their families and loved ones. Its vision is for every person affected by a neurological condition to be able to access the right treatment, care and support at the right time.
It defines a neurological condition as any condition that affects the brain, spinal cord and/or nerves. Because these systems control your mind and body, neurological conditions can affect the way you think and feel and interact with the world.
There are over 600 neurological conditions, including dementia, ataxia, migraine, epilepsy, Tourette syndrome, Parkinson’s, multiple sclerosis, motor neurone disease and cerebral palsy.
If you need support, Neurological Alliance members may be able to help. Visit www.neural.org.uk to find out more.
