Major new report reveals pathways to better neurological care
Luis who is living with Spinal Muscular Atrophy type 2, a rare neuromuscular condition
Neurological conditions affect one in six people in the UK, and that figure is set to rise. As a major new report is launched detailing the costs and impact of neurological conditions on the nation, PoliticsHome spoke to patient advocacy groups to learn more about how the nation can meet the rising tide of demand
A major new report has uncovered missed opportunities in the way that neurological care is coordinated and delivered in the UK.
“The Value of Action: Mitigating the Impact of Neurological Disorders in the UK” was commissioned by international pharmaceutical company Roche and produced by independent experts at The Economist Impact Unit. The picture it paints, is one of fragmented delivery, spiralling costs to the nation, and missed opportunities to reap the benefits of emerging treatments.
The Economist report reveals that neurological conditions cost the UK the equivalent of more than 4.3 per cent of its GDP in 2019 or at least £96bn. Over half of that is due to lost productivity, highlighting the impact of neurological conditions on the wider economy.
The collective prevalence of neurological disorders in the UK is more than 8% of the population
One of the conditions that the researchers investigated was Parkinson’s, the fastest-growing neurological condition in the world and one that currently affects 153,000 people in the UK.
“We welcome today’s important analysis from The Economist, which makes it clearer than ever that now is the time for the UK government to invest in the neurology workforce,” Sam Freeman Carney, health policy and improvement lead at Parkinson’s UK told us. “We must look to tackle the economic challenge of Parkinson’s and, above all, ensure people with the condition get the right care, at the right time, no matter where they live.”
It is a call that has been echoed by some parliamentarians. Mary Glindon MP is the chair of the All-Party Parliamentary Group on Parkinson's. She believes that investment in the foundations of neurology is essential to unlock better care for those living with the condition.
“Currently, there are people living with Parkinson's who can't access the care they need due to workforce shortages,” she told PoliticsHome. “The UK government must invest in the neurology workforce to ensure people living with Parkinson's get the care they need when they need it."
The Economist report supports Glindon’s view that an expanded workforce of skilled neurologists, neuroradiologists, and nurses can form part of the foundation for transforming care across a range of conditions.
Experts specialising in other conditions agree. Alison Fuller, director of health improvement and influencing at Epilepsy Action told PoliticsHome that the low policy profile of neurological conditions means that major structural issues often go unaddressed.
“Overall, the average number of consultant neurologists in the UK is much lower compared to Western Europe,” Fuller told us. “Delays and gaps in diagnosis and treatment can have huge repercussions on patient safety, from unplanned hospital admissions to breakthrough seizures, and even an increased risk of sudden unexpected death. We know, as it stands, epilepsy costs the NHS £2bn a year, but the human cost is immeasurable. Lack of access to specific care means people with epilepsy are held back in so many other areas of their life, one of the most prominent being employment and economic contribution and removing health inequalities directly reduces issues of mental health.”
It is a viewpoint that Ceri Smith, head of policy at the MS Society, also shares. She believes that the lack of a shared foundation across neurology means that patients living with MS are missing out on treatments that could potentially help them.
“Whilst there are now treatments available for many people with the condition, workforce constraints and strain on the NHS are creating barriers to access,” Smith explains. “The government must commit to establishing a Neurological Taskforce, to find ways to ensure all individuals with MS receive the timely and comprehensive care they urgently need.”
Whilst there is a cost associated with some new treatments, The Economist researchers show that investing in the capacity to implement existing interventions for the studied diseases would actually slash the economic burden of neurological conditions by a staggering £30.8bn. It could also improve the lives of millions.
Rob Burley, director of care, campaigns and support at Muscular Dystrophy UK told us that opening up access to new treatments would be transformational for those living with Spinal Muscular Atrophy. He also highlighted the importance of early diagnosis to ensure that patients receive help at the earliest possible stage.
“SMA is a progressive condition and the treatments do not reverse its effects, so the sooner someone is diagnosed and is able to receive treatment, the more benefit they are likely to gain,” he explained. “That is why adding SMA to the NHS Newborn Screening Programme is so important.”
PoliticsHome heard a similar plea for early intervention from David Thomas, head of policy at Alzheimer's Research UK. “The way dementia is diagnosed has barely changed for two decades, and services are not geared up to deal with the rapidly evolving research into new diagnostic tools and treatments,” he told us. “Early diagnosis, coupled with effective treatment, has been prioritised for conditions like cancer. We must see the same for dementia.”
Across all five major neurological conditions covered in the report, the same message emerges; the need for greater awareness and a coherent neurology strategy that creates the conditions where individual conditions can be diagnosed quickly and treated effectively.
However, for that to happen requires both investment and leadership. The Economist report shows that the current fragmented approach is simply not addressing some of the underpinning fundamentals that are required right across neurological care.
Richard Erwin, general manager at Roche Products Ltd UK, hopes that the newly released report will help to raise the profile and awareness of neurological conditions across all political parties, leading to change.
“The evidence is now there for policymakers showing that improving care can help patients, deliver savings to the NHS, and boost the overall economy,” Erwin says. “That evidence now needs to be turned into action.”
February 2024
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