How do we make MS services more efficient?
As someone with MS, can you realistically reduce your healthcare utilisation costs, improve your MS outcomes, and maximise your quality of life.
For those of you with MS living in the UK, you would have been impressed or unimpressed by Jeremy Hunt, Chancellor of the Exchequer, announcing in last week’s budget a special fund to improve NHS efficiency (‘Chancellor sets out £3.4bn plan to boost NHS productivity’, FT 6-Mar-2024). He expects the investment to generate at least a 0.5% annual improvement in the NHS's efficiency. Rather than rejecting his 0.5% target as fanciful based on long-term trends for healthcare becoming increasingly more costly, it is worth reflecting on whether or not this target is feasible in multiple sclerosis.
To do this, we need to know how much it currently costs to manage MS in the UK or England. Outside of high-cost disease-modifying therapies, it is almost impossible to separate MS-related costs from other healthcare costs. If someone with MS gets a urinary tract infection, falls and fractures a femur or loses their job because of MS-related cognitive impairment and needs income support, who carries the can?
Looking at several MS-related care pathways, only some can be isolated and costed independently of other NHS pathways. For example, somebody with MS-related bladder dysfunction often needs to tap into continence services that are not disease-specific. If we prevent a proportion of pwMS from needing continence services because of using very effective and expensive DMTs early in the disease course, the high costs of the DMTs could contribute to MS services becoming less efficient, not more efficient.
Patients may perceive efficiency gains as poorer care if we focus only on the care pathways we control. For example, performing monitoring MRI scans less frequently, performing fewer blood tests, switching all patients from infusion therapies to oral tablets or self-injection therapies, and seeing patients less often may save the NHS money, but is it improving MS outcomes and the quality of life of pwMS? What do you think?
In my opinion, the focus should not be on efficiency gains but on challenging the current healthcare delivery model for chronic diseases. How do we diagnose and manage MS in a way not dictated by time and geography? Time and geography (travel, buildings, and other infrastructure) are expensive. We should ask ourselves, ‘How can we manage MS asynchronously and remotely using new technology?’.
To achieve this, I have tried to create a narrative around designing and implementing Connect-MS, an all-encompassing healthcare application and MS-GPT, an MS-specific AI application. The problem with technological solutions is that adoption can be patchy; hence, many pwMS would be left behind. This is why, until technological solutions become the standard of care, you need hybrid systems to run in parallel. A costly synchronous location-based service (same-time, same-place and one-2-one) in parallel with an asynchronous non-location-based service (different-time, different-place and many-2-one). I have been trying to achieve the latter, albeit at a low level with MS-Selfie, i.e. activating pwMS to help self-manage their MS. I am convinced if we had metrics that MS-Selfie followers would cost the NHS less than pwMS not using MS-Selfie. Do you agree? If so, do you know how we could show this?
What about vulnerable, high-risk patients with MS? Won’t technological healthcare solutions let these pwMS fall through the cracks? If well-designed, the new system should have ways to identify and provide extra resources to high-risk patients. The following is a list of triggers that I use to identify pwMS who should be put onto a high-risk MS register:
Healthcare related factors
Recurrent UTIs
Falls and/or fractures
Faecal impaction and overflow diarrhoea
Pressure sores
Unplanned or emergency hospital admissions
Severe depression and anxiety
Suicide attempt(s)
Poor cognition
Poor foot, oral and general hygiene
Poor adherence to treatment
Social factors
Splitting up with life partner
Loss of work / becoming unemployed
Loneliness / social isolation
Poverty (not having money to make ends meet)
Homelessness
Repeatedly missing appointments
I would like to hear if you disagree with me or if you have other factors to add to this list. As you can see from my take on this problem, many factors are beyond the remit of healthcare professionals and the NHS. During the COVID-19 pandemic, when I was redeployed to help run a general medical ward, the biggest problem was being unable to discharge patients because of social issues. This is why Jeremy Hunt’s ambition to improve NHS efficiency depends on sorting out social issues and social determinants of health.
I envisage a multi-tiered MS service where most pwMS will use the NHS when they have problems on an as-needed basis. I have tried to create a vision of this in my ‘Future of MS Care’ MS-Selfie Newsletter (15-Feb-2022). In parallel, we have a proactive MS service for high-risk patients. We give these patients much more attention in the hope we can prevent unscheduled or emergency hospital admission while optimising their quality of life and maximising their MS outcomes. Am I being naive?
If the Chancellor wants individual HCPs, like myself, and pwMS to engage with his efficiency gains and/or cost-improvement targets, he will need to use carrots and sticks to incentivize us and make the targets service and/or disease-specific. I can’t change things I don’t control.
I know this newsletter is political, but healthcare and disease are political. I would like to hear about how you, as individuals with MS, can reduce your healthcare utilization costs, improve your MS outcomes, and maximise your quality of life. This is a big challenge but worth doing if we want to turn this ailing country around.
I recommend you read these old newsletters for further insights into my vision of future MS care.
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General Disclaimer
Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Queen Mary University of London or Barts Health NHS Trust. The advice is intended as general and should not be interpreted as personal clinical advice. If you have problems, please tell your healthcare professional, who will be able to help you.
Not too sure how to improve efficiency for MS treatment right now. It develops into a very complex disease that requires so many specialist services which you have alluded to.
To my mind the only way to reduce costs and improve efficiency is to catch the disease in its early days so that the possibility of advanced MS (SPMS) is eliminated. With this approach people can remain in work, pau tax and reduce the burden on the NHS. I dread to think what I have cost the NHS and the government. PIP since 2012. Numerous visits to see specialists, rotator cuff operation, several dislocated shoulders plus visits to A&E and too many repeat prescriptions and that is just the tip of the iceberg.
A start would be to prevent MS developing into smouldering MS. Allow the medical professionals to treat it the same way as cancer. Eliminate the ‘wait and see’ approach for people newly diagnosed. Everyone now knows what happens if the disease is allowed to develop and mature. MS-Selfie makes the patient more aware of the problems but is it making the medical profession and associated bean counters more aware of the costs and problems that accrue if the disease is not treated efficiently.
Maybe this does not directly answer your questions but somehow a more efficient way of treating MS needs to be found
"I envisage a multi-tiered MS service where most pwMS will use the NHS when they have problems on an as-needed basis. I have tried to create a vision of this in my ‘Future of MS Care’ MS-Selfie Newsletter (15-Feb-2022). In parallel, we have a proactive MS service for high-risk patients. We give these patients much more attention in the hope we can prevent unscheduled or emergency hospital admission while optimising their quality of life and maximising their MS outcomes. Am I being naive?"
No, not naive. But a really big problem is something you pointed out in the beginning of your post: "....it is almost impossible to separate MS-related costs from other healthcare costs." The same is generally true for pwMS in trying to separate MS-related ISSUES from other healthcare issues. Especially before they become bigger issues and lead to other problems, and specifically for people who are overwhelmed and/or less informed.
My neurologist told me something a number of years ago that took some time to sink in because it was difficult to separate from other things, and also because of the pushback I received from other healthcare professionals when I did remember (including ER doctors!). My neurologist told me that if my MS symptoms suddenly got worse (relatively suddenly, as in over hours or days), that I should suspect, and be checked for, an infection. Many times I would forget this and just ascribe it to a pseudoexacerbation (stress or heat), and really not be concerned about it, which many times was a sign from my body of an impending UTI. Or even worse, notifying healthcare professionals (LVN, RN, NP, MD) and having them disregard it as anxiety because the symptoms are not acute (I.e. low grade fever, UA takes days to get a result, etc). In the meantime, in any of these cases, the infection grows and leads to other complications. And it's not limited to just infections... it can be anything mistaken as trivial and/or not related to the MS either directly or indirectly. When I would ask for help, and explain what my neurologist told me about checking for infections first, my concerns were dismissed as frivolity, and I ended up with an out of control UTI, sepsis, and astronomical hospital bills. I don't know what to do about trying to be proactive and not being listened to or taken seriously--with or without tech. Us people with MS (pwMS) need our healthcare professionals to understand that we can sense signals in our bodies when something isn't right, even when the observable symptoms are subacute. And we need them to believe it isn't just overreaction or anxiety, or at some point after repeated experience, that it isn't misinterpretation.
Unfortunately multiple sclerosis affects nearly everything in the lives of pwMS. When I read or hear people say, "MS doesn't control my life," I apologize but that to me is naive, or more of a catch-phrase/mantra for books, t-shirts and commercials.