Grace Upcraft, 35, has joined up with Neurological Alliance as a new landmark survey has found nearly two in three (67 per cent) people with a neurological condition are not having their mental wellbeing needs sufficiently met.
Neurological Alliance represents more than 100 organisations including the MS Society and Epilepsy Acton – to speak out about how the lack of mental health support can make a neurological condition significantly worse, and leave people feeling isolated and withdrawn from social relationships and work.
Results from the My Neuro Survey – which asked 8,500 people living with neurological conditions about their experiences accessing treatment, care and support – revealed the vast majority (81 per cent of adults and 89 per cent of children and young people) said their condition had made their mental wellbeing worse.
Grace had her first seizure in March, 2020, at the start of the Covid-19 pandemic. The tests she needed to diagnose epilepsy were delayed and, in this period, she had to stop working as an editor.
She said: “I was finally diagnosed with epilepsy in November, 2020. It was a relief to finally have an official diagnosis after waiting for so long, suspended and unknowing. A label, if you will.
"However, once discharged I felt very alone. I had questions, but they went unanswered. My neurologists seemed to see me as a walking brain, rather than a human being.”
Despite the best efforts of services and healthcare professionals across the country, over half (60 per cent of adults and 52 per cent of children and young people) said they had not been asked about their mental wellbeing by a healthcare professional in the past three years.
At least one in six people live with a neurological condition, like Grace, which affects the brain, spinal cord, and nerves. Conditions like multiple sclerosis (MS) and epilepsy can impact anyone at any time, no matter your age, circumstance or gender. They can impact all aspects of your life, how you think, feel, move and work. When you have a neurological condition, such as Parkinson’s, the quality of care and support you receive is vital.
Due to staff shortages, poor integration of physical and mental wellbeing and restrictive and inconsistent commissioning of services, thousands of people are facing a daily battle with the healthcare system, including long waits for care.
“Not being able to drive had a negative impact as I felt a loss of freedom,” Grace added. “After my second seizure, it took months for my brain to restore itself and I just wasn’t retaining information. My memory problems meant I had to give up my work as a book editor. This was a job I was passionate about but I didn’t trust myself to edit any longer.
“I was connected to an epilepsy nurse in January, 2021, and I finally had the support I needed. My questions were answered and a simple adjustment to my medication schedule meant that my memory restored itself and I was able to take up my editorial work again.
"Since then, I have rediscovered my love of theatre and have been cast as a lead role in a local musical. There are a lot of lines to remember but I have no doubt that I can achieve it. I feel mentally stronger than before and am taking chances that I would have been too fearful of before.”
The report also highlights concerning delays to treatment and care reported in the survey, with more than half of adults (55 per cent) experiencing delays to a routine neurologist appointment. There was also a lack of support and information for people at diagnosis – with almost half (40 per cent) of adults and a third (33 per cent) of children not receiving any information about their condition when diagnosed.
To coincide with the research – which is included in the ‘Together for the one in six’ reports – latest stats from NHS England show that as of March, 2022, more than 225,000 people were waiting for NHS neurosurgery or neurology treatment in England. While some were waiting just under two years (96 weeks) to access specialist neuropsychiatric treatment in some parts of the country.
As part of the #BackThe1in6 campaign, people across the UK are being urged to sign a petition to all UK Health Ministers, calling on them to work together through a Neuro Taskforce to set out their plans to improve treatment, care and support for people affected by neurological conditions.
The Neuro Taskforce would bring together relevant departments, health and social care bodies, professional bodies, people affected by neurological conditions and the voluntary sector in all four UK nations.
Georgina Carr, chief executive at Neurological Alliance, said: “Living with a neurological condition can be exhausting and scary, and can have an enormous impact on mental health.
"Yet our report reveals people, like Grace are being left to struggle on alone – either not knowing where to go to for support, or facing an uphill battle to access under-resourced healthcare professionals.
“For years, people with neurological conditions have felt ignored, with public policy and service improvement for neuroscience under-prioritised. The tide is starting to turn, but we now need all four Governments to work together to develop and resource clear plans to improve the lives of the one in six people in the UK who live with a neurological condition.
"They must urgently put together a Neuro Taskforce to make sure we have the right services in place for people with a neurological condition now and in the future.
“With NHS England and Improvement recently announcing Integrated Care Systems are ‘ready to take on much greater responsibility’ – which will include more specialised services that people with neurological conditions rely on – the experiences that underpin the report and our calls to action must be heard now.
"Everyone living with a neurological condition must have access to high quality, joined up neurological care, wherever they live.”
Sign the #BackThe1in6 petition here: https://tinyurl.com/BackThe1in6