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.
Christopher, my urologist at UCI advised me to just wait out my obviously severe UTIs because I always have “embedded bacteria”. (Fire alarm in my head goes off!!!) Had I waited, I would have been septic. Where do these ideas come from? Your last paragraph moved me. I agree. This ultimately can be a very lonely illness that affects marriages, friendships, families, the whole lot. My best to you.
Thank you. I see Dr Czwikla at UCI. I don't think he would be so careless and cavalier. I'm sorry to hear you have had such a bad experience. That's really not fair.
Is that doctor in urology? The doctors I saw for a stone there were wonderful and then I was referred to this one for the urethral issues.(I won’t name names.) I won’t go back. It was so cavalier! The urinalyses were terrible, so I ignored the advice to wait it out! I’m glad you are getting some good care. You deserve a break, Christopher.
Great points Christopher. This post was so hard to answer. You can not easily pick out MS from other health problems. Are bodies systems talk to each other. I’m sick of being treated in parts. My weak Neuro system impacts others. Because I watch my diet and do lots of physio GPs medics overlook what’s happening on the inside. So ironically am at risk of “ healthy looking patient” discrimination.
Totally agree about the MS doesn’t control my life comment. In the early days, when in denial and still running 5 k I may have thought this. I did have to run with a friend on my left to stop me veering off. In truth, ithere were MS things that prevented me doing things, I just put it down to life. Head in the sands. Self preservation, I had a young baby. Couldn’t acknowledge the future. I’m sure a lot of these slogans come from denial.
I lost a sister with MS to overlooked Sepsis. NEVER EVER let medics put your concerns about sepsis to one side. If drs think I’m being OTT I tell them about my sister.
I'm currently stuck in limbo because the hospital my GP sends bloods to isn't the hospital I get neuro care from. It has taken 5 weeks to get notification that a large number of results are missing (despite me telling neuro hospital that my bloods were going to a different hospital). I now can't get bloods for 6 weeks. Waiting impatiently to start Cladribine. As we originally discussed in November, last ocrelizumab dose in May. I'm also in the process of selling the family home due to divorce (currently still living together) and buying somewhere new which doesn't have any of my support network close by.
I'm in the US, so I can't comment on efficiency of UK care. I do note that when I am told, in the notoriously messed-up US system, that someone wants to do something to "improve efficiency," I expect them to mean something that costs _me_ more time, effort, side effects, and disability so as to reduce _their_ next-quarter budget (not even their long-term budget! because in the US they can always hope I go to a different insurance/employer). I actually want an efficient system. I have trouble with the definitions of "efficiency."
I think reading MS Selfie helps, but many healthcare providers do not want patients who will advocate for themselves. We're super annoying.
No they don’t and yes we are. Too many educated questions can be threatening also. I have a legal background and I do not tell them. There is a myth here that there are myriad nonsense lawsuits and huge runaway suits. There aren’t. The U.S. simply wants to be immune from malpractice, never mind the corporate billions. That is called “tort reform”. Simply put, if you’re complicated, old and/or unemployed you are worth nothing. Huge mistakes and earnings matter. Otherwise you won’t find a lawyer to take your case (I know them.) And that’s California. I’m off topic here, but it’s another U.S. bonus. I could bang on but I won’t.
I did wonder. My partner who is American is going from one Dr to another, entirely unnecessarily. Not MS, but his circumstances do not require being passed from pillar to post - I am of the opinion that this is also motivated by money as each clinician gets a cut with each referral. I am horrified that the UK would be heading in this direction as the present fools in charge would consider it a personal investment. I digress. I’m guessing that as a Lawyer you can see what is happening for what it is and it must be frustrating.
The original question is cost cutting. I personally have informed my MS team that unless there are any changes personally, an MRI due, or if there are any relevant trials, I’ll stay away so that somebody else can take the slot. Otherwise, distinct clinical pathways should be the norm, including what could be dealt with by the GP/ Practice Nurse, that any one of them have access and click onto.
Btw...it does help that I’m a retired Nurse Practitioner and had the best clinical management, being fortunate enough to being within the catchment of the Royal London...with a swift referral from my excellent GP. A postcode lottery it would appear, so a clinical care pathway is a great start.
I suppose I really went off with my political frustration! You are very generous and pragmatic in your approach as a professional with MS. I agree! I’ve just now received exhaustive blood testing that suggest a nasty blood disorder, which may be a result of surviving massive doses of chemotherapy back in the Jurassic age for br cancer. (Not everything is MS!) Let’s see how long it takes to shove someone into action! It’s not easy here, as you only too well know. I send all my best to you and your partner. You sound like a treasure. :)
You’re very kind! A treasure I am not...I frequently feel like exploding when I see others going through unnecessary, traumatic, often pointless referrals in the US. It’s appalling and I just hope that the UK doesn’t take that route, for the financial gain of the very few. i.e. politicians. I believe that we are incredibly fortunate once referred to the right clinicians which generally happens pretty swiftly once the differential diagnosis points to MS. We also have an independent group called NICE (National Institute for Health and Care Excellence), independent of the politicians, which assesses the efficacy of treatment and medication vs cost.
Stops Big Pharma hooking into it and of no relevance to Insurance companies as we all pay National Insurance which pays for the NHS and State Pensions when we retire. All fairly irrelevant to the original question, but just an explanation. I feel we are very fortunate - I’ve seen the alternative. Take care and all the best :)
I don’t envy you. Having lived in the US and observing the healthcare, it’s quite clear that money is the motivator and seemingly controlled by Insurance companies and Big Pharma. Pretty awful. The more you understand, the more clout you’ll have. I have to help manage my partner’s medical issues, who lives in Florida, so that he can navigate the complex medical pathways...and he has excellent Insurance. I wish you all the very best.
Then you understand. You’re absolutely correct. Excellent medical insurance means nothing, I’m afraid. Care is another issue entirely. There are disclaimers that even though a service is covered does not mean it will be paid for. Alice in Wonderland!!
I think part of the problem is the prescribing of meds that cause side effects. So you have to ask are side effects worth it for the med benefit. In my experience it’s not. If you have bowel & bladder issues and are given meds for the bladder they can worsen bowel issues. If given equipment to wash out the bowel, this can be hard to stick with. Due to standing and balance issues. Although it’s preferable, I think some areas have stopped prescribing Peristeen. Baclofen and such meds can weaken other muscles and be intolerable on the mind. Then the social issues. Take meds driving is compromised.
Many meds I take end up back at the pharmacy recycle. We need more options, good physio, FES for different muscle groups. I understands there’s an FES trial for the bowel. We need to move away from instantly chucking tablets at MS ers. If they’re prescribed GPs ought to follow up. Not leave the patient to struggle making contact.
Recently with all the media reporting on Pregabalin I find it frightening that meds can be more concerning than MS.
Hi Helen, you nailed it. It becomes polypharmacy. Go away and take this. Why not peristeen? I know my insurance won’t cover it, but I have been asking my neuro for this. ??
I’ve used another brand. My GP practice were not happy when the Continence team ordered it. Because of cost. I used it for a few years. For several reasons I’ve stopped. My GP suggested I’d get a lazy bowel. My bowel fluctuates in habits far more now. I believe self management with as few symptom meds as possible for as long as possible. NHS just over prescribe a lot of the time. I’m sure if more time was spent with patients less meds would be wasted.
I would say that the best way to improve both the outcomes and lower the cost would be a priority focus on low level preventative care. HSCT should be given priority consideration as whilst initially expensive as a treatment it can lead to no ongoing need for DMTs which in the long term is cheaper for the NHS and less intrusive on day to day life. I for example would have better use of my legs now had HSCT been available as a furst line treatment at my diagnosis. I'd also say that MS should be exempt from prescription charges like cancer on broadly the same treatment would be. Both relating to HSCT and other low cost early intervention drugs I'm not taking as I can't afford the regular prescription charges at the moment. Access to proper physio when needed and in a timely manner (not a 4/5 month wait) would help people maintain their mobility and associated long term health benefits that comes with it would again lower the long term cost to the NHS by reducing secondary illness associated with inactive patients like heart disease, obesity, liver problems etc. These secondary costs seem to me to be by far the most effective way to reduce the overall cost to the NHS in looking after people with MS as the primary disease will always require treatment
I'm not in the UK but the problems you list are universal. In the 30 years I have had diagnosed MS, a neurologist has never offered anything except another medication. Time has shown that there is a long list of failures and adverse events trailing behind each of these. Each one is offered as a new answer that is better than what went before.
No neurologist, doctor or other health professional has ever made an attempt to look beyond the most superficial elements. As an example, constipation can be a problem, yet no one ever said "maybe we should scan your abdomen and pelvis and see what's going on". Instead they wait for something to reach the point where something goes wrong. Then it's someone else's issue, never theirs. Why isn't a conversation with a gastroenterologist part of the process?
No one has ever said to me what type of exercise works. Not even the botox doctors do that. If you end up with physios you're left wondering if they have any understanding of upper motor neuron damage at all. You find yourself in a cookie cutter factory. Most physical therapists cannot relate to the type of damage an MS person has.
There are many other things that can go wrong, but neurologists, in my experience, never ever say "watch out for the following things". They say nothing but there is always an unspoken hint that suggests "you'll find out, see ya".
Thank you. You hit one of my personal frustrations, physiotherapists aa aggressive “physical therapists” who leave us as a pile of quivering impossible tremor pushing “strengthening” (especially upper body) exercises. And they have NO clue. I refuse. All of yours very well said.
Agree with type of physio needed to recover from a relapse whether new symptoms or pseudo relapse due to flu or Covid or Scarlet Fever in my case with chest infections and back to back. The “wait and see” approach lead to severe chest infection and extreme weakness in r side of body. I have done as much as I can myself to try to get back to EDDS 6.5 but am stuck in needing wheelchair again and not coping on crutches. No neuro physio suggested by G. P. or other. I asked for neuro physio last year after hip bursitis, it did not happen. WS told self referral Muscular Skeletal by phone. I did ask them for neuro physio and was informed that it was not asked for by G. P. I was then sent exercises that I could possibly do myself. Then asking again was told to join a gym !
I know hydro therapy helps but need carer to go to local swimming pool etc and no funding for that via my Direct Payments as “not for that “. What is going on with trying to help self with the right physio. I have had M. S. for 25 years and it used to be a part of M. S. management with “ well set up home neuro physio “ or even rehabilitation twice. I am made to feel that I am not trying to help myself. My last neuro phone call it was said “Are you doing your exercises ?” I said yes they are pinned on my fridge, but my legs have declined despite trying doing them “
If only I could get help to do the clam manoeuvres, I may improve …
This sounds so frustrating and painful. I still have not found anyone to come to my home, even though my GP was to set this up. And I understand completely that while we wait, we get weaker. I also understand not being able to do those exercises independently anymore. (I cannot get in water alone at all anymore.) And when you do have physio help, it can’t be anyone aggressive, or you can get worse! My best to you. I hope you can get out of the chair and back to walking.🌷
I don't think they really know what exercise actually works. And there _is_ no recommendation that fits every pwMS, given the wide range of disability levels/symptoms.
My current theory is that pwMS should be doing stuff that looks like neurorehabilitative physical therapy _from the beginning,_ scaled to the appropriate amount of challenge. And for someone like me (moderate fatigue, almost no motor issues, decade+ exercise base built up) that's really challenging, way more challenging than a rehab PT would recommend for a normal person, much less someone with MS. Maybe a sport performance type PT would be okay with it. But... I think that's _why_ I have almost no motor issues.
(I developed this theory reading MS-Selfie, though it's certainly not something any of the studies has said yet.)
It's all still true and it beats the daylights out of the physiotherapy approach. The issue, in my mind, is it's better to prepare for spasticity issues to arise rather wait for it to happen, and Pilates training is perfect for this.
There is, of course, the issue of fatigue. That's a whole topic of its own and there is a difference between the fatigue that has no explanation (lassitude) and muscle fibre fatigue. Both require an understanding of ATP but are completely different processes.
The private/very-small-group model of Pilates training is a perfect example of what I mean! (I don't think the big mat-based classes would be all that helpful, though.) The video was great; what you and Sarah talk about around minute 30, with breaking down gait into its components and not practicing mistakes etc. sound a lot like what I hear from neurorehabilitative PT, which is very different from regular PT.
I do think there are other ways to do that, but you have to be actively trying to do that. Most exercise modalities aren't even trying to do it.
Yep, big classes are just aerobics lying down or classes for waving your arms and legs around. The sort I did is called studio pilates. It's a maximum of four in a class with one teacher. As a person with MS, it's great to do it with normal people. It's shows others what your issues are, but also it shows you that other people have problems of their own. Some classes are quite the social event even though you're definitely working.
The exercise modalities are so different, it's bizarre to call them both Pilates.
I never got into Pilates, because I have weird mobility restrictions (nothing to do with MS, I've been like this since I was a kid). Studio Pilates is also really expensive where I am (one private class costs more than an entire month of my moderately-expensive specialty gym). When my immune system has reconstituted, though, I will give it a try!
Don't be afraid of joining a class of four, if it brings the cost down. I've been in many classes with people who have problems and everyone is considerate of each others problems. It's extremely rare to see instagram models with perfect flexibility. Usually, it's just average people with average aims. I have been in classes with hyper-flexible people and they often have problems that are as troubling as we have with lack of flexibility.
Hi, There are measures and tools which can determine the social and economic costs associated with complex conditions. These tend to be used at time intervals, say over 5 years. They can be very effective but need the buy in of research funders (who like quick wins), families and professionals. They are costly and tend to be urban centric leading to disparities since rural areas face distinct challenges (including rubbish internet conenctions and higher costs for care). Multiple tools are clumsy, long-winded and often adopt an abelist approach which can make participants feel inadequate. They need to be completed face to face by skilled researchers so that support can be given as needed. Participants still tend to be middle class and this is an issue with complex conditions as the outcomes may not reflect the majority of people and families managing MS. However, the tools do adopt a whole household approach and include partners, children and seniors who help with care. They tend to end up in very part-time employment, isolated and also needing more GP care (for medications such as anti-depressants). I think the emphasis has to be on families and local communties beyond the NHS. Whilst it is probably foolhardy to expect any real gains in efficency in the NHS, especially in the field of chronic disease, there is a need to measure where people spend most of their time and receive the majority of their care. It is in the home, at GPs and with community care (incontience, blood tests and so on). MS impacts beyond the person with MS and affects family members too.
Yes, very well put. Most "accessibility" features anywhere seem to have been cobbled together by able-bodied engineers' misplaced and misinformed ideas of what people with disabilities need to work with. A good example (but too long to describe here) is my experience trying to get help with my broken iPhone... it took three months to resolve the issue because no one at Apple ever had to deal with getting a dead cell phone repaired alone, and with a serious quadriplegic disability, I guess.
And that is so true that MS affects more than just the person with the disease. Actually it affects the whole community, if we really think about it.
your msg says: 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 ...
how can that be !! who's counting outcomes? avoiding incontinence is PRICELESS !!
i think the big issue is reconceptualising efficiency - its sposed to be a service for people not politicians or even clinicians
eg i had my bladder perfect best for many years (with my self care working well) - then had catheterisation after complicated dislocation of hip - 2 ops needed.
after only 1.5 days catheterisation i was completey incontinent - its humiliating, exhausting (taking wet trousers and underwear on and off while im forbidden to bend down), isolating (no going out or socialising, so mental health off a cliff), much more difficult to exercise so lots of other bad things more likely etc etc. so-called service made it much worse. taken me several months to sort myself out.
still not back to where i was before the so-called services got their claws in me
The NHS could stop writing letters, unless to people who cannot handle digital communications. My current Trust is moving that way, gradually. My GP practice have an email but they get a rainforest of paper to upload & shred, every day. Not long ago I waited hours in a hospital for one service to "fax" some information to the floor above... ok, bring back the paper files, that was quicker.
Centralise medical records so that all NHS doctors have access to all records, tests and scans. This seems so hard to achieve.
Given the scale of basic administrative error and delay, more sophisticated diagnostic tests for earlier diagnosis feel a bit pointless. I've encountered (some) excellent clinicians but appalling admin.
The result is that I spend a lot of my time - as in, several hours per week - chasing prescriptions, scan results, arranging referrals, cancelling duplicate appointments, correcting errors... Do admin staff understand how serious MS is and how much harm this is causing?
If I had cognitive problems I might be less able to be proactive: I agree that people with cognitive decline are a very vulnerable group. I'd also add: anyone who does not use digital devices. And I'm afraid, anyone with fatigue. If you have fatigue, you can't cope with the relentless battle to manage NHS care. Similarly, if you have a physical disability, *everything* takes longer - getting dressed, getting washed, going out. It leaves very little time for anything else. So requiring MS patients to do more, to relieve the burden on the NHS, could undermine our quality of life if it implies that jobs are effectively outsourced to us. I'm sure that's not the intention here but it is already happening.
Consultants' secretaries often seem to act as more of a barrier than anything. The assumption is they provide necessary admin support and a "safety wall" to separate patients from doctors. The words "contact his secretary" are almost as doom-laden as "see your GP": they don't answer and don't always call back. Look at MS forums, especially the comments from people awaiting diagnosis, and you'll see how isolated and scared people feel. If we are going to have more self-management, we also need a more responsive NHS.
On more responsive: we need to measure not just "time to respond" but "quality of response". Otherwise people just forward problems to each other within the NHS and nothing gets done.
Another idea: more group sessions. Some appointments have to be individual. But a lot of MS education is better in groups. We learn from each others' questions. Ask people to read basic information in advance. I didn't even really feel I needed an appointment to learn to use injector pens. It's so simple, the instructions are clear...could have started months earlier.
It would also help me stay in work (and pay taxes) if non-urgent healthcare appointments were more flexible and easier to book. I've yet to hear anyone ask how the NHS can make more efficient use of patients' time. But if you have a chronic health condition, this is a real issue.
I am fearful that so goes the U.S., so goes the UK. We are unfortunate in the states in that care depends upon finances, geography and luck. There is no prioritization, per se. I don’t think you are naive, Prof G, but whenever the powers that be speak to efficiency, I’ve found it involves the bottom line. I am a mess in the bladder/UTI department, and have no coordination of care. Fortunately, I now have a GP who is on top of it, however, he is a “boutique practice”; there are no GPs to be found here. And even then, his office is incredibly slow. My neurologist recently relocated to the coast without informing patients but consults via Zoom. And the urologist was a bust in that after Botox, I’m cathing 5 times per day waiting for the Godot of Botox to wear off. MS indeed needs to be aggressively treated like cancer or stroke. However, I don’t see that happening because we are costly patients who persevere and require a plethora of ongoing ancillary services. (Stayin’ alive!) That’s the view from here watching what’s taking place.
- Reduce the anti-relapse treatment options available. For newly diagnosed with RRMS, only offer across the NHS, three high efficacy treatments (three induction therapies eg Alemtuzumab) + one moderate efficacy therapy. Will pay dividends later on for the patient. Too much choice which includes low efficacy treatments (!) is inefficient.
- Neuros to be more aggressive in pushing patients to participate in trials. Costs of therapy and monitoring usually paid by the pharma company sponsoring the trial.
- Stopping the neuro / academic split. You can’t serve two masters. Either be a neuro (full time) or an academic (neuro).
- small grant (£500) for patients who need it to buy an exercise bike (£200) + cover three trips to a neuro Physio (to teach stretching / exercises). Neuro / nurse to keep pushing the benefits of regular exercise / stretching + diet. Retaining muscle etc. will help reduce falls etc.
- stop pointless MRIs for those with progressive MS. If there’s no treatment options, what’s the point!
- stop the obsession with keeping people alive when they have advanced neurological diseases. We wouldn’t let animals suffer in this way. Patients need to know what end stage MS looks like and need to highlight their preferences early on.
- the greatest efficiency improvement will come from a treatment which stops the underlying disease. When patients can be given treatment to stop any further neuro-degeneration it will keep people in employment, relationships etc. and reduce the frequency of clinic visits / hospital visits.
The recent loss of a patient in a UK MS trial is a heartbreaking reminder of the importance of high-quality care and patient well-being. We also need more joined up thinking, as referenced in the other comments here.
While improving efficiency in MS services is important, it should never come at the expense of patient-centred care. There's a strong focus on maximising quality of life for people with MS.
It is critical that patient communication and feedback is prioritised: this means clear communication with doctors and a system for addressing concerns about care or bedside manner.
My MS CNS is just like a gatekeeper to the consultant. Might be the only questions I have for her are related to my DMT so have to be discussed with the consultant do get taken to their weekly meeting. Not sure what the benefit is then of my yearly appointments with her. I’d agree with your selection of high priority patients for CNS to see and leave the rest of us to contact them as and when required.
You are quite right. Many things like can be dealt with by the GP/ Practice Nurse. They should be the first port of call. They’ll certainly refer you back to the MS team if they can’t.
A proven and effective way of realistically reducing healthcare utilisation costs would be to offer HSCT as a first-line treatment to any PwMS who asks for it, as an alternative to costly DMTs. Even if the STAR-MS trial finally ends up arriving at this conclusion, its implementation would probably still be a long way off and almost certainly not much help to those of us on the wrong side of 60.... 🙄
Edited to add - many would argue that HSCT also ticks your other two boxes of improving MS outcomes and maximising quality of life.
You are probably aware that neurologists and MSologists don't agree on this. At last week's British MS Debating Society, attended by MSologists from the UK, the motion of allowing AHSCT first-line lost. So this is not going to happen anytime soon :-(
HSCT is paid for by an umbrella payment, i.e. a fixed amount to cover x patients, and it goes to haem-oncology. Yes, shifting payment of MS DMTs from neurology and NHS England to another department may solve one problem, but create another problem. This will require moving money from one budget to another and that is where the problems begin.
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.
Christopher, my urologist at UCI advised me to just wait out my obviously severe UTIs because I always have “embedded bacteria”. (Fire alarm in my head goes off!!!) Had I waited, I would have been septic. Where do these ideas come from? Your last paragraph moved me. I agree. This ultimately can be a very lonely illness that affects marriages, friendships, families, the whole lot. My best to you.
Thank you. I see Dr Czwikla at UCI. I don't think he would be so careless and cavalier. I'm sorry to hear you have had such a bad experience. That's really not fair.
Is that doctor in urology? The doctors I saw for a stone there were wonderful and then I was referred to this one for the urethral issues.(I won’t name names.) I won’t go back. It was so cavalier! The urinalyses were terrible, so I ignored the advice to wait it out! I’m glad you are getting some good care. You deserve a break, Christopher.
Great points Christopher. This post was so hard to answer. You can not easily pick out MS from other health problems. Are bodies systems talk to each other. I’m sick of being treated in parts. My weak Neuro system impacts others. Because I watch my diet and do lots of physio GPs medics overlook what’s happening on the inside. So ironically am at risk of “ healthy looking patient” discrimination.
Totally agree about the MS doesn’t control my life comment. In the early days, when in denial and still running 5 k I may have thought this. I did have to run with a friend on my left to stop me veering off. In truth, ithere were MS things that prevented me doing things, I just put it down to life. Head in the sands. Self preservation, I had a young baby. Couldn’t acknowledge the future. I’m sure a lot of these slogans come from denial.
I lost a sister with MS to overlooked Sepsis. NEVER EVER let medics put your concerns about sepsis to one side. If drs think I’m being OTT I tell them about my sister.
I'm currently stuck in limbo because the hospital my GP sends bloods to isn't the hospital I get neuro care from. It has taken 5 weeks to get notification that a large number of results are missing (despite me telling neuro hospital that my bloods were going to a different hospital). I now can't get bloods for 6 weeks. Waiting impatiently to start Cladribine. As we originally discussed in November, last ocrelizumab dose in May. I'm also in the process of selling the family home due to divorce (currently still living together) and buying somewhere new which doesn't have any of my support network close by.
That is awful. My heart goes out to you.
I'm in the US, so I can't comment on efficiency of UK care. I do note that when I am told, in the notoriously messed-up US system, that someone wants to do something to "improve efficiency," I expect them to mean something that costs _me_ more time, effort, side effects, and disability so as to reduce _their_ next-quarter budget (not even their long-term budget! because in the US they can always hope I go to a different insurance/employer). I actually want an efficient system. I have trouble with the definitions of "efficiency."
I think reading MS Selfie helps, but many healthcare providers do not want patients who will advocate for themselves. We're super annoying.
No they don’t and yes we are. Too many educated questions can be threatening also. I have a legal background and I do not tell them. There is a myth here that there are myriad nonsense lawsuits and huge runaway suits. There aren’t. The U.S. simply wants to be immune from malpractice, never mind the corporate billions. That is called “tort reform”. Simply put, if you’re complicated, old and/or unemployed you are worth nothing. Huge mistakes and earnings matter. Otherwise you won’t find a lawyer to take your case (I know them.) And that’s California. I’m off topic here, but it’s another U.S. bonus. I could bang on but I won’t.
I did wonder. My partner who is American is going from one Dr to another, entirely unnecessarily. Not MS, but his circumstances do not require being passed from pillar to post - I am of the opinion that this is also motivated by money as each clinician gets a cut with each referral. I am horrified that the UK would be heading in this direction as the present fools in charge would consider it a personal investment. I digress. I’m guessing that as a Lawyer you can see what is happening for what it is and it must be frustrating.
The original question is cost cutting. I personally have informed my MS team that unless there are any changes personally, an MRI due, or if there are any relevant trials, I’ll stay away so that somebody else can take the slot. Otherwise, distinct clinical pathways should be the norm, including what could be dealt with by the GP/ Practice Nurse, that any one of them have access and click onto.
All the best with yours :)
Btw...it does help that I’m a retired Nurse Practitioner and had the best clinical management, being fortunate enough to being within the catchment of the Royal London...with a swift referral from my excellent GP. A postcode lottery it would appear, so a clinical care pathway is a great start.
I suppose I really went off with my political frustration! You are very generous and pragmatic in your approach as a professional with MS. I agree! I’ve just now received exhaustive blood testing that suggest a nasty blood disorder, which may be a result of surviving massive doses of chemotherapy back in the Jurassic age for br cancer. (Not everything is MS!) Let’s see how long it takes to shove someone into action! It’s not easy here, as you only too well know. I send all my best to you and your partner. You sound like a treasure. :)
You’re very kind! A treasure I am not...I frequently feel like exploding when I see others going through unnecessary, traumatic, often pointless referrals in the US. It’s appalling and I just hope that the UK doesn’t take that route, for the financial gain of the very few. i.e. politicians. I believe that we are incredibly fortunate once referred to the right clinicians which generally happens pretty swiftly once the differential diagnosis points to MS. We also have an independent group called NICE (National Institute for Health and Care Excellence), independent of the politicians, which assesses the efficacy of treatment and medication vs cost.
Stops Big Pharma hooking into it and of no relevance to Insurance companies as we all pay National Insurance which pays for the NHS and State Pensions when we retire. All fairly irrelevant to the original question, but just an explanation. I feel we are very fortunate - I’ve seen the alternative. Take care and all the best :)
I don’t envy you. Having lived in the US and observing the healthcare, it’s quite clear that money is the motivator and seemingly controlled by Insurance companies and Big Pharma. Pretty awful. The more you understand, the more clout you’ll have. I have to help manage my partner’s medical issues, who lives in Florida, so that he can navigate the complex medical pathways...and he has excellent Insurance. I wish you all the very best.
Then you understand. You’re absolutely correct. Excellent medical insurance means nothing, I’m afraid. Care is another issue entirely. There are disclaimers that even though a service is covered does not mean it will be paid for. Alice in Wonderland!!
I think part of the problem is the prescribing of meds that cause side effects. So you have to ask are side effects worth it for the med benefit. In my experience it’s not. If you have bowel & bladder issues and are given meds for the bladder they can worsen bowel issues. If given equipment to wash out the bowel, this can be hard to stick with. Due to standing and balance issues. Although it’s preferable, I think some areas have stopped prescribing Peristeen. Baclofen and such meds can weaken other muscles and be intolerable on the mind. Then the social issues. Take meds driving is compromised.
Many meds I take end up back at the pharmacy recycle. We need more options, good physio, FES for different muscle groups. I understands there’s an FES trial for the bowel. We need to move away from instantly chucking tablets at MS ers. If they’re prescribed GPs ought to follow up. Not leave the patient to struggle making contact.
Recently with all the media reporting on Pregabalin I find it frightening that meds can be more concerning than MS.
Hi Helen, you nailed it. It becomes polypharmacy. Go away and take this. Why not peristeen? I know my insurance won’t cover it, but I have been asking my neuro for this. ??
I’ve used another brand. My GP practice were not happy when the Continence team ordered it. Because of cost. I used it for a few years. For several reasons I’ve stopped. My GP suggested I’d get a lazy bowel. My bowel fluctuates in habits far more now. I believe self management with as few symptom meds as possible for as long as possible. NHS just over prescribe a lot of the time. I’m sure if more time was spent with patients less meds would be wasted.
I would say that the best way to improve both the outcomes and lower the cost would be a priority focus on low level preventative care. HSCT should be given priority consideration as whilst initially expensive as a treatment it can lead to no ongoing need for DMTs which in the long term is cheaper for the NHS and less intrusive on day to day life. I for example would have better use of my legs now had HSCT been available as a furst line treatment at my diagnosis. I'd also say that MS should be exempt from prescription charges like cancer on broadly the same treatment would be. Both relating to HSCT and other low cost early intervention drugs I'm not taking as I can't afford the regular prescription charges at the moment. Access to proper physio when needed and in a timely manner (not a 4/5 month wait) would help people maintain their mobility and associated long term health benefits that comes with it would again lower the long term cost to the NHS by reducing secondary illness associated with inactive patients like heart disease, obesity, liver problems etc. These secondary costs seem to me to be by far the most effective way to reduce the overall cost to the NHS in looking after people with MS as the primary disease will always require treatment
I'm not in the UK but the problems you list are universal. In the 30 years I have had diagnosed MS, a neurologist has never offered anything except another medication. Time has shown that there is a long list of failures and adverse events trailing behind each of these. Each one is offered as a new answer that is better than what went before.
No neurologist, doctor or other health professional has ever made an attempt to look beyond the most superficial elements. As an example, constipation can be a problem, yet no one ever said "maybe we should scan your abdomen and pelvis and see what's going on". Instead they wait for something to reach the point where something goes wrong. Then it's someone else's issue, never theirs. Why isn't a conversation with a gastroenterologist part of the process?
No one has ever said to me what type of exercise works. Not even the botox doctors do that. If you end up with physios you're left wondering if they have any understanding of upper motor neuron damage at all. You find yourself in a cookie cutter factory. Most physical therapists cannot relate to the type of damage an MS person has.
There are many other things that can go wrong, but neurologists, in my experience, never ever say "watch out for the following things". They say nothing but there is always an unspoken hint that suggests "you'll find out, see ya".
Thank you. You hit one of my personal frustrations, physiotherapists aa aggressive “physical therapists” who leave us as a pile of quivering impossible tremor pushing “strengthening” (especially upper body) exercises. And they have NO clue. I refuse. All of yours very well said.
Agree with type of physio needed to recover from a relapse whether new symptoms or pseudo relapse due to flu or Covid or Scarlet Fever in my case with chest infections and back to back. The “wait and see” approach lead to severe chest infection and extreme weakness in r side of body. I have done as much as I can myself to try to get back to EDDS 6.5 but am stuck in needing wheelchair again and not coping on crutches. No neuro physio suggested by G. P. or other. I asked for neuro physio last year after hip bursitis, it did not happen. WS told self referral Muscular Skeletal by phone. I did ask them for neuro physio and was informed that it was not asked for by G. P. I was then sent exercises that I could possibly do myself. Then asking again was told to join a gym !
I know hydro therapy helps but need carer to go to local swimming pool etc and no funding for that via my Direct Payments as “not for that “. What is going on with trying to help self with the right physio. I have had M. S. for 25 years and it used to be a part of M. S. management with “ well set up home neuro physio “ or even rehabilitation twice. I am made to feel that I am not trying to help myself. My last neuro phone call it was said “Are you doing your exercises ?” I said yes they are pinned on my fridge, but my legs have declined despite trying doing them “
If only I could get help to do the clam manoeuvres, I may improve …
This sounds so frustrating and painful. I still have not found anyone to come to my home, even though my GP was to set this up. And I understand completely that while we wait, we get weaker. I also understand not being able to do those exercises independently anymore. (I cannot get in water alone at all anymore.) And when you do have physio help, it can’t be anyone aggressive, or you can get worse! My best to you. I hope you can get out of the chair and back to walking.🌷
I don't think they really know what exercise actually works. And there _is_ no recommendation that fits every pwMS, given the wide range of disability levels/symptoms.
My current theory is that pwMS should be doing stuff that looks like neurorehabilitative physical therapy _from the beginning,_ scaled to the appropriate amount of challenge. And for someone like me (moderate fatigue, almost no motor issues, decade+ exercise base built up) that's really challenging, way more challenging than a rehab PT would recommend for a normal person, much less someone with MS. Maybe a sport performance type PT would be okay with it. But... I think that's _why_ I have almost no motor issues.
(I developed this theory reading MS-Selfie, though it's certainly not something any of the studies has said yet.)
I'm a huge fan of Pilates for MS. About 8 years ago, I was asked to do a Youtube video about using Pilates with MS. - https://www.youtube.com/watch?v=4lBkf3GVhEE
It's all still true and it beats the daylights out of the physiotherapy approach. The issue, in my mind, is it's better to prepare for spasticity issues to arise rather wait for it to happen, and Pilates training is perfect for this.
There is, of course, the issue of fatigue. That's a whole topic of its own and there is a difference between the fatigue that has no explanation (lassitude) and muscle fibre fatigue. Both require an understanding of ATP but are completely different processes.
The private/very-small-group model of Pilates training is a perfect example of what I mean! (I don't think the big mat-based classes would be all that helpful, though.) The video was great; what you and Sarah talk about around minute 30, with breaking down gait into its components and not practicing mistakes etc. sound a lot like what I hear from neurorehabilitative PT, which is very different from regular PT.
I do think there are other ways to do that, but you have to be actively trying to do that. Most exercise modalities aren't even trying to do it.
Yep, big classes are just aerobics lying down or classes for waving your arms and legs around. The sort I did is called studio pilates. It's a maximum of four in a class with one teacher. As a person with MS, it's great to do it with normal people. It's shows others what your issues are, but also it shows you that other people have problems of their own. Some classes are quite the social event even though you're definitely working.
That was the word I was looking for! Thanks. :)
The exercise modalities are so different, it's bizarre to call them both Pilates.
I never got into Pilates, because I have weird mobility restrictions (nothing to do with MS, I've been like this since I was a kid). Studio Pilates is also really expensive where I am (one private class costs more than an entire month of my moderately-expensive specialty gym). When my immune system has reconstituted, though, I will give it a try!
Don't be afraid of joining a class of four, if it brings the cost down. I've been in many classes with people who have problems and everyone is considerate of each others problems. It's extremely rare to see instagram models with perfect flexibility. Usually, it's just average people with average aims. I have been in classes with hyper-flexible people and they often have problems that are as troubling as we have with lack of flexibility.
I agree with you as once you get to the stage of being able to the Pilates movements or access a Pilates studio
See my comments below :)
Hi, There are measures and tools which can determine the social and economic costs associated with complex conditions. These tend to be used at time intervals, say over 5 years. They can be very effective but need the buy in of research funders (who like quick wins), families and professionals. They are costly and tend to be urban centric leading to disparities since rural areas face distinct challenges (including rubbish internet conenctions and higher costs for care). Multiple tools are clumsy, long-winded and often adopt an abelist approach which can make participants feel inadequate. They need to be completed face to face by skilled researchers so that support can be given as needed. Participants still tend to be middle class and this is an issue with complex conditions as the outcomes may not reflect the majority of people and families managing MS. However, the tools do adopt a whole household approach and include partners, children and seniors who help with care. They tend to end up in very part-time employment, isolated and also needing more GP care (for medications such as anti-depressants). I think the emphasis has to be on families and local communties beyond the NHS. Whilst it is probably foolhardy to expect any real gains in efficency in the NHS, especially in the field of chronic disease, there is a need to measure where people spend most of their time and receive the majority of their care. It is in the home, at GPs and with community care (incontience, blood tests and so on). MS impacts beyond the person with MS and affects family members too.
Yes, very well put. Most "accessibility" features anywhere seem to have been cobbled together by able-bodied engineers' misplaced and misinformed ideas of what people with disabilities need to work with. A good example (but too long to describe here) is my experience trying to get help with my broken iPhone... it took three months to resolve the issue because no one at Apple ever had to deal with getting a dead cell phone repaired alone, and with a serious quadriplegic disability, I guess.
And that is so true that MS affects more than just the person with the disease. Actually it affects the whole community, if we really think about it.
your msg says: 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 ...
how can that be !! who's counting outcomes? avoiding incontinence is PRICELESS !!
i think the big issue is reconceptualising efficiency - its sposed to be a service for people not politicians or even clinicians
eg i had my bladder perfect best for many years (with my self care working well) - then had catheterisation after complicated dislocation of hip - 2 ops needed.
after only 1.5 days catheterisation i was completey incontinent - its humiliating, exhausting (taking wet trousers and underwear on and off while im forbidden to bend down), isolating (no going out or socialising, so mental health off a cliff), much more difficult to exercise so lots of other bad things more likely etc etc. so-called service made it much worse. taken me several months to sort myself out.
still not back to where i was before the so-called services got their claws in me
that's what should made be more 'efficient'!
The NHS could stop writing letters, unless to people who cannot handle digital communications. My current Trust is moving that way, gradually. My GP practice have an email but they get a rainforest of paper to upload & shred, every day. Not long ago I waited hours in a hospital for one service to "fax" some information to the floor above... ok, bring back the paper files, that was quicker.
Centralise medical records so that all NHS doctors have access to all records, tests and scans. This seems so hard to achieve.
Given the scale of basic administrative error and delay, more sophisticated diagnostic tests for earlier diagnosis feel a bit pointless. I've encountered (some) excellent clinicians but appalling admin.
The result is that I spend a lot of my time - as in, several hours per week - chasing prescriptions, scan results, arranging referrals, cancelling duplicate appointments, correcting errors... Do admin staff understand how serious MS is and how much harm this is causing?
If I had cognitive problems I might be less able to be proactive: I agree that people with cognitive decline are a very vulnerable group. I'd also add: anyone who does not use digital devices. And I'm afraid, anyone with fatigue. If you have fatigue, you can't cope with the relentless battle to manage NHS care. Similarly, if you have a physical disability, *everything* takes longer - getting dressed, getting washed, going out. It leaves very little time for anything else. So requiring MS patients to do more, to relieve the burden on the NHS, could undermine our quality of life if it implies that jobs are effectively outsourced to us. I'm sure that's not the intention here but it is already happening.
Consultants' secretaries often seem to act as more of a barrier than anything. The assumption is they provide necessary admin support and a "safety wall" to separate patients from doctors. The words "contact his secretary" are almost as doom-laden as "see your GP": they don't answer and don't always call back. Look at MS forums, especially the comments from people awaiting diagnosis, and you'll see how isolated and scared people feel. If we are going to have more self-management, we also need a more responsive NHS.
On more responsive: we need to measure not just "time to respond" but "quality of response". Otherwise people just forward problems to each other within the NHS and nothing gets done.
Another idea: more group sessions. Some appointments have to be individual. But a lot of MS education is better in groups. We learn from each others' questions. Ask people to read basic information in advance. I didn't even really feel I needed an appointment to learn to use injector pens. It's so simple, the instructions are clear...could have started months earlier.
It would also help me stay in work (and pay taxes) if non-urgent healthcare appointments were more flexible and easier to book. I've yet to hear anyone ask how the NHS can make more efficient use of patients' time. But if you have a chronic health condition, this is a real issue.
I am fearful that so goes the U.S., so goes the UK. We are unfortunate in the states in that care depends upon finances, geography and luck. There is no prioritization, per se. I don’t think you are naive, Prof G, but whenever the powers that be speak to efficiency, I’ve found it involves the bottom line. I am a mess in the bladder/UTI department, and have no coordination of care. Fortunately, I now have a GP who is on top of it, however, he is a “boutique practice”; there are no GPs to be found here. And even then, his office is incredibly slow. My neurologist recently relocated to the coast without informing patients but consults via Zoom. And the urologist was a bust in that after Botox, I’m cathing 5 times per day waiting for the Godot of Botox to wear off. MS indeed needs to be aggressively treated like cancer or stroke. However, I don’t see that happening because we are costly patients who persevere and require a plethora of ongoing ancillary services. (Stayin’ alive!) That’s the view from here watching what’s taking place.
See my comments below:)
- Reduce the anti-relapse treatment options available. For newly diagnosed with RRMS, only offer across the NHS, three high efficacy treatments (three induction therapies eg Alemtuzumab) + one moderate efficacy therapy. Will pay dividends later on for the patient. Too much choice which includes low efficacy treatments (!) is inefficient.
- Neuros to be more aggressive in pushing patients to participate in trials. Costs of therapy and monitoring usually paid by the pharma company sponsoring the trial.
- Stopping the neuro / academic split. You can’t serve two masters. Either be a neuro (full time) or an academic (neuro).
- small grant (£500) for patients who need it to buy an exercise bike (£200) + cover three trips to a neuro Physio (to teach stretching / exercises). Neuro / nurse to keep pushing the benefits of regular exercise / stretching + diet. Retaining muscle etc. will help reduce falls etc.
- stop pointless MRIs for those with progressive MS. If there’s no treatment options, what’s the point!
- stop the obsession with keeping people alive when they have advanced neurological diseases. We wouldn’t let animals suffer in this way. Patients need to know what end stage MS looks like and need to highlight their preferences early on.
- the greatest efficiency improvement will come from a treatment which stops the underlying disease. When patients can be given treatment to stop any further neuro-degeneration it will keep people in employment, relationships etc. and reduce the frequency of clinic visits / hospital visits.
The recent loss of a patient in a UK MS trial is a heartbreaking reminder of the importance of high-quality care and patient well-being. We also need more joined up thinking, as referenced in the other comments here.
While improving efficiency in MS services is important, it should never come at the expense of patient-centred care. There's a strong focus on maximising quality of life for people with MS.
It is critical that patient communication and feedback is prioritised: this means clear communication with doctors and a system for addressing concerns about care or bedside manner.
My MS CNS is just like a gatekeeper to the consultant. Might be the only questions I have for her are related to my DMT so have to be discussed with the consultant do get taken to their weekly meeting. Not sure what the benefit is then of my yearly appointments with her. I’d agree with your selection of high priority patients for CNS to see and leave the rest of us to contact them as and when required.
Should say I also get directed to my GP for things like constipation so now go straight to GP and don’t bother CNS
You are quite right. Many things like can be dealt with by the GP/ Practice Nurse. They should be the first port of call. They’ll certainly refer you back to the MS team if they can’t.
ProfG are you correctly informed about ME/CFS? Could you diagnose an MS patient with a double diagnosis?
Yesterday's article on Guardian:
https://www.theguardian.com/commentisfree/2024/mar/12/chronic-fatigue-syndrome-me-treatments-social-services?CMP=fb_gu&utm_medium=Social&utm_source=Facebook&fbclid=IwAR1ZPVE4ORxlLbbzlBOXWxGE6wSFeDEbt8h9Jdwo4FP753aqIKEalADXbN4#Echobox=1710262526
A proven and effective way of realistically reducing healthcare utilisation costs would be to offer HSCT as a first-line treatment to any PwMS who asks for it, as an alternative to costly DMTs. Even if the STAR-MS trial finally ends up arriving at this conclusion, its implementation would probably still be a long way off and almost certainly not much help to those of us on the wrong side of 60.... 🙄
Edited to add - many would argue that HSCT also ticks your other two boxes of improving MS outcomes and maximising quality of life.
You are probably aware that neurologists and MSologists don't agree on this. At last week's British MS Debating Society, attended by MSologists from the UK, the motion of allowing AHSCT first-line lost. So this is not going to happen anytime soon :-(
HSCT is paid for by an umbrella payment, i.e. a fixed amount to cover x patients, and it goes to haem-oncology. Yes, shifting payment of MS DMTs from neurology and NHS England to another department may solve one problem, but create another problem. This will require moving money from one budget to another and that is where the problems begin.