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.
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.
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.
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".
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.
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.
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.
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.
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.
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.
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".
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.
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.
- 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.
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.