MS Trust Survey: UK Nurses Treating ‘Unsustainable’ Numbers of Patients

The number of nurses in the U.K. with a specialty in multiple sclerosis (MS) care rose significantly between 2018 and 2021, but these specialists on average carry a patient caseload that’s 50% higher than recommended, as a pronounced rise in MS cases was also noted, the MS Trust reports.

In-person visits returned for almost all MS specialists in August 2021, yet more than three-quarters of MS patients live in areas where caseloads per specialist nurse were not sustainable. In addition, about one-third of MS specialist nurse teams were unable to offer home or ward visits, with advanced disease patients likely most affected.

These findings, from the latest MS Trust specialist nurse survey, were detailed in its report MS Nurse Mapping 2021. A plain language summary is available here.

MS Trust has conducted surveys to map MS specialist nurse services across the U.K. every two years since 2014. This 2021 survey replaced a planned 2020 effort canceled due to COVID-19 and its impact on healthcare.

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The new report drew on responses from 133 MS specialist nurse teams across the U.K. — with most, 80.5% or 107 nurses working in England — to surveys sent by email in August. The main survey included questions about the number of MS nurses and their caseload, appointments they were able to offer, and administrative support available to them.

Caseloads were provided by these teams based on data taken from their databases (40%) or best estimates (60%). This method differed from previous surveys that calculated caseloads per nurse based on estimates of local MS prevalence and nurse workload percentage.

A separate questionnaire that included training and future plans, like retirement, was completed by 176 individual nurses.

Survey findings showed 360 MS specialist nurses (equivalent to 298 full-time specialists) in the U.K. in August 2021, compared with 292 in September 2018 (with a full-time equivalence of 250) — reflecting a 23.3% increase.

Using self-reported caseloads, MS specialist nurse teams were estimated to care for a total of 140,633 MS patients, a rise in the estimated number of patients needing care in the 2018 survey (107,700 cases) and higher than Public Health England estimates for 2020, the group reported.

Notably, the mean patient caseload per full-time MS specialist nurse was 472, higher than the 391 patient caseload estimated in 2018 for these full-time nurses and 50% higher than that seen as supportable for “safe, high-quality” — or sustainable — care.

“The recommended, sustainable caseload figure per [full-time] MS specialist nurse is 315,” the Trust noted. “This inevitably means that MS specialist nurses are having to leave work undone and will be unable to meet all the needs of every [patient] on their caseloads.”

Overall, 64% of MS specialist nurse teams were working with caseloads above that considered sustainable.

Northern Ireland had the highest caseload, with its eight specialty nurses in 2021 responsible for a mean full-time caseload equivalence of 800 MS patients; Scotland followed with a mean full-time caseload equivalence of 647 patients for its 36 specialty nurses; England had a mean equivalence of 447.8 patients for is 304 nurses; and Wales had a mean full-time caseload equivalence of 363 patients for its 12 specialized MS nurses.

A majority, 79%, of MS patients lived in areas with unsustainable caseloads, an increase from a 69% estimate in 2018.

“MS nurse caseloads are growing faster than the number of MS nurses,” the MS Trust noted. “For every MS nurse in the UK to have a sustainable caseload we would need 1.5 times the current MS nurse workforce, equivalent to an extra 149 MS nurses working full time.”

Previous studies suggest that when overloaded, MS nurses are most likely to fall short on “psychological interventions, physical assessments, social interventions/benefits, and recommending or prescribing medications,” the nonprofit group added. “This will inevitably impact negatively on outcomes for [patients] and lead to increased use of unscheduled care services and increased costs for the NHS [National Health Service].”

By August 2021, 95.6% of MS nurse teams were again making in-person visits. However, about one-third of these teams were unable to provide either home visits (36%) or ward visits (33%), and 12% were unable to do either visit.

As people with advanced MS find travel for a clinic appointment most difficult, these patients “may be the least likely to receive specialist MS care” and “are the first group to be lost from unsustainable caseloads,” the MS Trust added.

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Services “consistently” well provided to patients included those related to continence issues and speech and language therapy, while access to neuropsychology for cognition was largely “insufficient” and to psychology and counseling mostly either insufficient or “patchy.”

Among MS nurse teams, 15.7% reported having adequate administrative support, mostly in England, while 18.2% reported “zero” such support. This translated to “less time available to see people with MS while they manage these administrative tasks” that range from booking appointments and basic record-keeping to writing and sending referral letters, the MS Trust stated.

About one-third of the specialty nurses responding to the survey were also looking to leave, with 14.2% planning to retire in the next two years and 22.2%  in the next five years. Another 18.8% are considering “a role outside MS” and about 5% are actively looking for one.

“This means workforce planning will be an important consideration” in the near future, the group said, as  “the training and experience MS nurses have … is not easily replaced.”

Survey findings highlight that “there remains a lot of work to be done to ensure that everyone living with MS has access to the specialist care and support they need at the right time and in the right place,” the MS Trust stated.

The MS Trust also emphasized its continued support for MS specialties, including its Specialist Nurse Program and Advanced MS Champions program, and in ensuring quality care for all with MS.