I am sure you have all read or heard a version of Goldilock’s and the three bears. Goldilocks finds one of the bears’ beds too hard, one too soft and the final bed is just right, which allows her to lie down and fall asleep.
At the moment the United States is having an existential crisis about the cost and value of its healthcare system. A series of articles in the New England Journal of Medicine (NEJM) is asking whether or not the massive amount of money that the US spends on healthcare is delivering good value for money. It is quite clear that the US is an outlier when you look at a simple integrator of population health outcome (see figure below).
At the same time that the NEJM is reflecting on the poor value that the US healthcare system delivers there are fundamental changes happening to healthcare delivery, which are being rapidly adopted because of the impact of the coronavirus pandemic.
As a person with a chronic disease is your MS being under-managed, over-managed or managed just right? Maybe you don’t know how to answer this question, because you don’t know what an ideal MS management pathway looks like.
A related issue is a fundamental battle been two ideologies that is currently playing out across the globe; the socialist European model of healthcare versus the neoliberal or capitalist US model of healthcare. Should the management of MS at a population level be value-based, i.e. based upon the utilisation of limited resources that deliver value by improving the length of life and/or increasing the quality-of-life experienced by a population of people with MS? This implies that the focus is on the population and not the individual.
Are these a topic worth discussing on this blog?
Eric Schneider. Health Care as an Ongoing Policy Project. N Engl J Med 2020; 383:405-408.
CoI: multiple
Welcome back, Prof G! Hope you had a good break.
I think it would be an interesting topic for the blog. Personally, I don’t know what an ideal MS management pathway looks like – I can only compare my experiences with others on here or on Twitter. Here in Germany, I was lucky to be diagnosed quickly and so far, I’ve had appointments with my neurologist every three months, which, reading some of the comments on here, I know is not the same for everyone. I wouldn’t mind less frequent appointments if only each one were a bit longer – I don’t feel there is time to discuss things through properly and as a result usually leave feeling frustrated.
I really hope that Europe doesn’t adopt the American model of healthcare as I feel it should be available to all that need it, but at the same time resources ARE limited and it’s important that they are being used efficiently to improve the quality of life for people with chronic illnesses. A thorny issue indeed.
“Are these a topic worth discussing on this blog?“
No.
I am a patient with a chronic disabling disease. I’ve seen some research which suggests that the average life expectancy for an MSer is 30 years following diagnosis. The last 10 years of an MSers life (EDSS 8 – 9.5) are a living hell.
I’m not interested in how healthcare is financed or managed. I, like every other MSer, just wants one thing – not to become more disabled. I will gladly remortgage my house to pay for a drug which stops MS in its tracks ie no more worsening. Think of the broader savings to an economy which would result – more employment opportunities for MSers, less disability benefits, lower need for MS nurses, lower need for other medical appointments (blood tests, MRIs, physio).
I don’t want my MS managed, I want it stopped. The therapy which does this (for all MSers) will negate the need to discuss the pros and cons of different models of healthcare. I also take issue with your assessment that the U.K. system is a socialist system. Many NHS doctors have a foot in the public and private healthcare systems. The NHS uses private hospitals when needed to treat “public” patients. NHS doctors (particularly those involved in research) are more than happy to work for private pharma companies. alongside their NHS role. We have a mixed healthcare system where most NHS doctors were educated in the private education system, despite only c.6 % of U.K. students attending private schools. Hardly a “socialist” system.
Get back in the lab Prof G. Time spent navel gazing about models of healthcare is time wasted.
i think the “30 year” prognosis may have changed dramatically in the last ten years most people 30 years ago were told to go home and get on with it they didn’t have access to disease modifying therapies for most of their disease course especially not effective ones. although it is still hard to get these effective therapies today i have faith that the more effective ones make a difference it has too or there is no point taking them. Surely less disability means lower mortality ?
Hi Dan
I would love to see a reference to a paper that compares LONG term effects of all these new drugs. I can’t believe this information is not easily available or done!
We all begin ms with so much hope on these drugs,
I have ms 10 years. I lost both legs, one arm , the other arm and my voice partially gone , house bound, problems swallowing…eta
I have been on fingolimod since the beginning 7 years then Cladribine and I wonder how much worse would had it been with no drugs…
Hi maria
have you looked into alemtuzamab or hsct ? there is some good articles on this blog with reference to people that have been treated with reconstitution therapies seeing the disease halted i’m very sorry to hear what you have been through. Do you feel they have helped ?
Maria,
We’ve been sold a pup. Michelle Obama’s father died of MS at 55, Theresa May’s mother died of MS in her early 50s, J K Rowling’s mother died of MS in her mid 40s. My dad’s half sister died of MS in her late 40s. Yet we keep being told how lucky we are that we are in the era of DMTs! Where is the data showing most MSers are walking unaided 20 years after dx? If Prof G is right this is one disease, progressive from the start and DMTs do not address the processes driving increasing disability / brain atrophy. Yet we are so grateful to researchers for all their efforts and the progress they are making! Until something is available to address the real MS I will reserve my gratitude.
Michelle Obama father died in 1991 before the modern era of dmt’s , Teresa Mays mother died in 1982 when people were sent home to get on with it and jk rowlings mother was already spms and passed in 1990 again before the modern era. alot of early mortality is now avoidable due to modern treatments and knowledge with ms . treatments such as alemtuzumab and hsct have been shown to lower brain atrophy massively over the last 25 years life expectancy for patients with ms has grown at almost the same rate as the general population.
Thanks Dan more eloquent than me, hope you (Proper Charlie) get his point
Dear Proper Charlie…AKA Sid.
None of the people you discuss had the benefit of highly active treatments…I dont mean the CRAB drugs.
Alemtuzumab has been around since 2012, cladribine 2017, Ocrelizumab 2017…..so it will take time for the potential benefit or not to filter through. In addition if you do not start early enough you are not going to maximise the benefit. I think you and ProfG mentioned how good some of the alemtuzumabers are doing many years on and on that note
“Yet we are so grateful to researchers for all their efforts and the progress they are making!”….I seem to remember you extolling the virtues of profC from Cambridge.
I think you only have to look at the effect of DMT on neurofilament levels to address your comment to some extent…remember what my Dad said:-)
Yes, Dan is more eloquent but your answers crack me up, MD. And without a daily dose of laughter, where would be?
Listen to Hissing Sid? or is that Sid Vicious? Remember the Album “Never mind the Bollocks” I guess this is what springs to mind when I read the comments:-)
this graph indicates how this 30 year thingy is no longer valid https://youtu.be/58WH-yZ5LNg?t=2645
Maria, I guess we all are the natural experiment (Tysabri in my case) that will provide the material for the research that will lead to the papers you (and I) want to see. There are no real large-scale long-term follow up studies yet because the long term hasn’t yet happened. It’s all still too new.
As a person that ticks all the bad prognosis box’s with an attack that has caused me to leave my physical work unable to breathe properly and be too weak to lift a glass and a neurologist that wont give me the time of day although i have had new lesions within 2 months of mri’s its definatley being under managed im uk based and having to pay out for a private consultation and travel 2 hours away to try and get reffered by a diffrent neurologist to be offered anything more than crab drugs i love the work and effort that you all put in its smashing !
as a UK patient who has just had their first noticeable attack which hospitalized me and has left me weak in all four limbs and barely able to move needing help to even get out of bed my neuro has been awful the care has been terrible i had a follow up mri which showed new lesions two months after the first mri with contrast enhancing lesions present in my spine and was offered the crab drugs even though i have heavy lesion load in brain. I am being forced to pay for a private consultation and travel two hours to see a specialist consultant to try and be refereed for better care and more effective drugs. also i fit every single box on the bad prognosis list other than smoking diet and exercise as i have always tried to live healthy. so my disease is being under managed. Sent home with co codamol and acid reflex tablets four months ago with no discussion about disease modifying therapies other than a letter offering me crab drugs now four months on and on second course of steroids not offered plasma exchange or anything else even though the first set of infusion steroids did nothing if more UK specialists put the effort in that you guys do we could be so much better.
Dan it makes me seethe the sheer number of times I read experiences like yours on this Blog!
The Association of British Neurologists revised the guidelines for prescribing DMTs in 2015.
You can find it online easily enough.
From it I quote:
‘Two or more relapses in the previous two years (you are) considered to have active disease’
‘ immunotherapies appear particularly helpful when given early to people with active RRMS before there is disability or secondary progression.’
NHS Definitions supplied via NHS Choices and Patients Rights under the NHS Constitution 2015 are also worth a look at.
Do hope you’re able to obtain the DMT you really want and will benefit from!
Hey there fi ! Thank you for the reply ! I have always been healthy up untill now and am absolutely diagusted with the treatment i have recieved im self funding a private visit with a neuro that is costing me 270 pound i shouldnt have too ! The ms nurses are amazing i cant say anymore good things about them but my neuro doesnt seem to want to do anytning especially not treat me with induction therapy this is the issue i think for lazy neuros that dont want to be proactive id love to be reffered to one of the neuros on this blog that actually want to help ! I cant wait untill next thursday i hope i get some answers! Ive very quickly learnt to be my own health advocate 🙂
Hi Dan, I did it the opposite way round to you. After partial loss of sight and then tingling in my foot which gradually went numb and up my leg, I went private and picked an MS specialist. Consultant diagnosed TM, lesion T4, and CIS with posi ‘O’ bands. My neuro said I shouldn’t be paying for it, no insurance, so moved me on to his NHS list. He put me in touch with an MS nurse, all great.
Over a year, after the first consultation with him on the NHS I was left feeling as if he wasn’t that bothered and didn’t answer my concerns.
After my second consultation, 1 yr after diagnosis, I felt he’d ridiculed me and just didn’t believe me. Third consultation, his secretary put me with a different consultant who had no idea who I was.
During this time, I had become numb from waist down, lost control of bowel and bladder and enhanced visual issues. He refused to scan my spine but continued to scan brain, and announced by text each time that my brain scan was still clear so all must be well with me.
I moved myself to another hosp, had full scans again, brain was still clear but I had five more lesions from C2 to T8, they started me on alemtuzumab April 2019, the week it was suspended! I relapsed Oct, treatment delayed, having another relapse right now, going in for steroids on Monday. Convinced my Neuro to let me have my second round of lem and I can’t say how absolutely brilliant my whole team are. They are there when you need them and they listen.
It really is about finding the right team.
wow weeble its so sad the way the system works ! my first noticeable attack in may has left me weak in both arms and legs distorted vision loss of bladder control however that seems to be the only thing really improving ! after four months im now on a second round of steroids my neuro and nurse dint even know what a plasma exchange was or ivig i had to ask for a jcv test which they didn’t understand why i wanted it even though they wanted to put me on tecfidera then changed their minds about me going on it when i came back positive 2.5 its very distressing having to pay out of pocket to see a proper neurologist im hoping he will see how badly affected ive been ive gone from 0 to probably a 3.5 edss after one attack with no major signs of improvements other than gaining feeling back ! as md says it is postcode lottery at play and in 2020 it shouldn’t be like this ive worked everyday since leaving school and have never even so much as spent a night in hospital before yet i was put on covid active ward with people around me dying of the damn horrible illness whilst on steroid drip suppressing my immune system i was disgusted with the treatment i received and since leaving the treatment has only worsened they seem to be leaning heavily on the covid situation as an excuse even though the neurologist i have spends no more than 20 seconds a day on the wards so i don’t know how its causing him to pass such bad treatment!
The problem of post code medicine shows its ugly head again
Could it be that there comes a day when stopping the Disease modifying drugs is the righting to do? A question I have been asking myself, 22 years after the diagnosis and 35 years after the first symptoms. Being on DMTs for 22 years may in itself take a toll on the body and may be the inflammatory component has burned out and there is only slow neurodegeneration? Just find there is not so much interest in us older MS patients, 60+, and how to manage our situation. Could it be that immunosuppresion and aging is not a good combo? Is there a burnout?
I live in the U.S. and have excellent management of my MS. But I work on my relationships with my doctors. And I am my own advocate.
As we don’t have the magic medicine that is being discussed, wanted, right now many of us have to accept the situation as it is.
I’m diagnosed 20 years but I suspect it started 2 decades early. I’m no where near death, and although I have disabilities and probably at 6.5 on EDSs., I would like better support not management. It isn’t just semantics, I don’t want to be managed. I want to be able to discuss changes be heard and supported. Not rushed, put in the tunnel again, to be told what I know, no more active lesions but still I slide, very slowly down the MS slope.
Agree this is not semantics Helpet; not when you look at the definition of ‘managed’ and the first words that come up are governed and controlled.
Supported, guided, enabled and facilitation are far more applicable.
Sadly the 15mins with a UK neurologist or MS nurse (both stressed and overworked) can never, or very rarely, meet the needs of PwMS.
In fact another word I’d like to add is ‘known’ I really wish my clinicians knew me as a person, even if to a limited extent! It’s so painful to feel the sum of me is my timed walk, my blood pressure (always rockets when I’m in a hospital) and my MRI results. Oh and with the nurse the rash of questions that I always make friends and family laugh by saying this can work on the basis of ‘how’s your mood?’ following on from ‘how’s your bladder and bowel?’ and the quick response of ‘fine’ is all that’s required to both!
Years ago I did a counselling course when the trainer provided this definition of the word ‘fine’ – ‘F**king incapable of normal emotion’
Thank you dan for your reply I am now SPMS I think it’s too late now.
Fingo stopped relapses but it did nothing to go to the Second phase , I want to believe that Cladribine slowed things down.
I came across Mooc today called Beyond Medical Histories: Gaining insight from patient stories. Aimed at HCP’s.
Seems to be what this post and responses cover.
“Are these a topic worth discussing on this blog?”…………yes, absolutely. I have found that all of the topics presented on the blog incite meaningful discussions among MS experts and patients. Reading this blog each day gives me comfort, hope, a sense of community, and most importantly, knowledge to advocate for the best care possible. I felt helpless and confused about my MS before finding this blog, so thank you for all that you do, it is greatly appreciated.
While I cannot speak to how the corporate side of the US healthcare system works, as a patient, I am generally pleased with my MS care in the US. I live in a large metropolitan area, work for a union with good health care options, and have access to good neurologists and healthcare facilities. By no means is it perfect; however, it could be worse. What my MS care lacks is compassion, collaborative discussions about individualizing DMT treatment plans, and more than 15 minutes to meet with my doctors. I would also like some of my doctors to listen to me instead of dictating what is best for me “based on widely proven data”. Some times a round peg does not fit into square hole!
We all want a cure (well except big pharma), we want the days of no pain, no struggling, no impairment, but until that day comes I know I have a team across the pond fighting, researching, and advocating for me, and on those difficult MS days, that gives me comfort and hope.
Thanks for tweeting such a highly controversial topic like this one! It provides a platform for HCPs and PLwMS an opportunity to express an opinion about their healthcare system, the support and delivery of care received.
I note in the comments the frustrations about care, there seem to be two themes:
1. The lack of opportunity or timeliness in the delivery of medication (DMTs) halting the course of the disease
And
2. The feeling medical teams do not “care”, Consultant appointments are “too short”.
As a neuro specialist physio and pilates teacher these are common themes I often experience in clinic.
It seems to me to expectations are key.
What do PLwMS expect to receive from their healthcare team? What do they want from their appointments?
I often ask these of the individuals I work with, which leads to a dialogue about deeper fears that exist in those living with a progressive disease…
“how will I know if I am getting worse?”
“How do I spot a relapse?”
“how do I know I’m on the right treatment?”
Supporting PLwMS to gain a sense of control about these issues, (dare I use the word) “self-manage” more effectively will allow for more timely and effective contacts with the healthcare team. But, how often are these questions asked?
Who should ask these questions? Usually it falls to persons like myself to fill in the gaps. Too often, meant with no disrespect, but individuals look up to their Consultant, their words are the holy grail. I am unclear where that belief comes from? But it certainly exists in many people I have worked with. Rightly or wrongly then, I feel Consultants have a role to play in setting expectations early in the “patient journey.” Time spent doing so would not be wasted and may prevent disappointment, improve outcomes and interventions in future care.
I teach on The Bridges Self Management Programme – facilitating HCPs to work in this way. I wish more doctors and consultants might consider attending this type of training?