MS Nurses in UK Burdened by Heavier Caseloads, Survey Shows

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by Ed Tobias |

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You might be wondering why a Yank like me is writing about multiple sclerosis care in the United Kingdom. It’s because a survey caught my eye the other day that I think deserves a closer look.

The survey, conducted by the MS Trust and reported by MS News Today‘s Marta Figueiredo, alerts us to what could be a serious problem for people with MS in the U.K.: Caseloads for nurses who specialize in MS care rose significantly from 2018 to 2021.

The survey of 133 MS specialist nurses in the U.K. shows that MS specialist nurse teams there saw more than 140,000 patients in 2021, up from just under 108,000 three years earlier.

Though the number of these nurses has also increased slightly over that time — from 292 in 2018 to 360 in 2021 — the mean patient caseload for each full-time nurse has risen from 391 to 472 during the same period. This patient load is 50% higher than what the MS Trust considers to be the threshold for “safe, high-quality” care.

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A view from the UK

I asked fellow MS News Today columnists and U.K. residents Beth Shorthouse-Ullah and John Connor what their MS nursing care has been like. 

Beth writes that after she was diagnosed, she saw her MS nurse nearly every month because she was having exacerbations that frequently. These days Beth contacts her nurse by email whenever it’s necessary, and she usually gets a quick response. It’s easier than booking a full appointment every time she needs help.

Beth finds that she can be treated with steroids within a week if she’s having a relapse.

But she also notes: “The sad thing is I think I’m lucky. I can say it’s because I was a unique case, but I just think I hit gold with [my MS nurse].”

John says he sees his MS nurse every six months. But if he’s having a specific problem, he can phone her and get a quick response. He also sees his MS neurologist every six months.

Are they luckier than most?

It looks as if Beth and John may indeed be fortunate. The MS Trust recommends a limit of 315 patients for each attending MS nurse. That’s below the number of patients (391) each nurse had in 2018, and far below the number in 2021 (472).

“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,” the report concludes.

Fortunately, this doesn’t seem to be the case for my two colleagues. Beth thinks she may be receiving good care because she’s learned how to navigate the MS highway like an expert. John feels his background in journalism may have helped him to obtain better responses from his MS care team.

Better in the US?

This isn’t much different from what some of us go through here in the U.S. The squeaky wheel usually gets the care. Of course, in the U.S., money also helps grease the skids. Those who can afford to pay for top-notch care — and the insurance to cover it — are more likely to receive it than those who aren’t as well-off. This shouldn’t be the case, right?

I wonder what we should expect first: Will healthcare officials in the U.K. find the cash to hire more MS nurses or will U.S. lawmakers write checks to make excellent healthcare available to all? Or neither?

You’re invited to follow my personal blog at www.themswire.com.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Tracey kennedy avatar

Tracey kennedy

I'm in Canada. I'm having a really strong relapse, right now. I'm in rehab now, looks like they want to send me to LTC, which horrifies me. I'm wondering if we're having a covid reaction, world wide?

Reply
Ed Tobias avatar

Ed Tobias

Hi Tracey,

I'm sorry for the problems you're having and hope they pass quickly. I don't doubt that COVID-19 has caused health care staffing problems worldwide. However, this problems seems to be more a case of the number of people who are being treated for MS is increasing at a faster rate than the number of nurses who specialize in treating MS...at least in the U.K.

Ed

Reply
Ben Smoke avatar

Ben Smoke

I appreciate this column. I live in Staunton Va. I have SPMS / age 77. Do not want medication that may be pointless - even harmful. ..too new on the market / endless MRI. My legs have become weaker through the years. Before retiring I was a Licensed Clinical Social Worker...first in Ohio then in Va. Today's medical system is weak & expensive. Still decline for me is slow. I use both a cane and a walker. I believe strongly in mindfulness and creativity! Thank you. Ben.

Reply
Ed Tobias avatar

Ed Tobias

Hi Ben,

Thanks for your comments. You're four years older than me and I now feel the same way about meds. My Lemtrada treatments, which began about five years ago, will be my last. I'm slow, but I still get where I'm going. On the other hand, we need a lot more speed at fixing our broken medical care system in the U.S. I think, however, that's just wishful thinking.

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