MS Society Report: Neurology Services in UK Struggling to Help Patients

The COVID-19 pandemic brought extra strain to already-stretched neurology services across the U.K., markedly affecting multiple sclerosis (MS) care and patients’ health, according to a report from the MS Society.

These findings were consistent with those of a 2020 report from U.K.’s Neurological Alliance showing that the pandemic disrupted vital care and support for people with MS and other neurological conditions.

Named NeurologyNow, the new report was based on responses from 746 people living with MS, and 198 healthcare professionals working on neurology fields, to surveys held in August. The surveys focused on how MS and neurology services have been affected during the pandemic.

“The latest findings from our #NeurologyNow report paint a stark picture of the UK’s neurology services. After years of neglect, the pandemic has pushed these vital services to breaking point — and they can’t continue under such strain,” Phillip Anderson, head of policy at MS Society, said in an announcement.

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“Healthcare professionals — from neurologists and MS nurses, to occupational therapists and physiotherapists — are working themselves ragged but still finding it impossible to deliver the care that is needed with the resources available to them,” Anderson added.

Nearly two-thirds (63%) of healthcare professionals found it very or extremely challenging to provide good service to everyone —  twice as many as those reporting the same before the pandemic (32%), NeurologyNow showed.

Most (73%) reported being unable to see patients in a timely way, and 42% said they have had to compromise the quality of care they would normally deliver. Also, nearly a third (32%) expressed concerns for the safety of some of their patients.

Increased waiting times for appointments since the pandemic hit were reported by 53% of these professionals.

About half of healthcare professionals also felt that COVID-19-related service limitations may affect the physical and mental health, as well as the well-being, of most people with progressive neurological conditions.

The report also highlighted “the tragic effect this situation has on real people,” Anderson said, with 52% of MS patients reporting symptom worsening during the pandemic, and more than half (53%)  “saying [that] not getting specialist support contributed to this.”

“Understandably during the pandemic, it wasn’t possible to have face-to-face appointments,” but even telephone appointments “were far and few,” said Ayad, 24, who has progressive MS and lives in Leeds.

“However my condition was rapidly declining,” Ayad said, adding that during the pandemic he had gone “from skipping daily to using a wheelchair daily.”

Among MS patients responding, 29% had their appointments cancelled or delayed, and about one-quarter said they needed to see an MS specialist nurse, a neurologist, or a physiotherapist over the past 12 months were unable to.

Among patients who had their appointments cancelled or delayed, 51% said that they have not received information on how to manage symptoms on their own, although they would have liked to do so.

“This represents a major missed opportunity given the potential of self-management approaches,” such as digital tools and virtual services, the society stated in the report.

Notably, most (67%) patients who had appointments via telephone or video reported having received some or all of the support and information they needed.

Differences were also evident in MS care across the U.K., which got worse with the pandemic.

“This urgently needs to change,” Anderson said, “starting with UK Governments prioritizing neurology services by making and resourcing national neurology plans” that “ensure people with neurological conditions aren’t left behind in the wake of the pandemic.”

The MS Society handed an open letter to the Department of Health and Social Care in London on Oct. 26, signed by nearly 8,000 people and calling for the U.K.’s various governments to address the urgent needs in neurology services.

It asks that appropriate funding be provided to not only support the development of national plans to restore and improve neurology services, but also to recruit and retain neurology professionals.

Ensuring that every MS patient has access to appropriate care, at the right time, across the U.K. is a stated goal.

That day, the society also talked with more than 40 members of parliament and the House of Lords about the report and the needs spotted, and is set to deliver the open letters to the Scottish, Welsh, and Northern Ireland governments.

The MS Society’s report and its proposals will also be discussed with Steve Powis, the national medical director for England’s National Health Service.