Barts-MS rose-tinted-odometer: ★★
If you don’t measure it you can’t change it. The fact that the UK was performing so poorly relative to other EU countries on the EMSP’s MS barometer was one of the reasons why I got into MS politics and helped put together the ‘Brain Health: Time Matters’ policy document.
In 2015, despite being the second wealthiest nation in Europe, the UK was in the bottom three of the EU league table in terms of prescribing DMTs, particularly high efficacy DMTs. Fortunately, things have improved slightly and we are now mid-table, but way below average (see figure below). Is this good enough? NO! The under-treatment of MS in the UK will obviously be linked to poorer outcomes, i.e. more disabled, more unemployed, more demented and smaller-brained people living with MS in the UK compared to comparator countries above us in the league table.
I am often asked if I had MS what country would I want to live in to have my MS treated. I rarely hesitate, it has to be either Sweden or Australia. Why? Because these two countries have universal healthcare policies and they both allow their MSologists to manage MS how they see fit. This is why both Sweden and Australia have about 70% of their patients on high efficacy DMTs. There are also no Swedish or Australian DMT police standing over their consultants saying you can only use drug X or refer this patient for HSCT if they fulfil these criteria. Yes, the Swedish and Australian healthcare systems trust their consultants to get on with the job they have been trained to do, i.e. to treat MS with very little central interference.
Some conservative neurologists argue that both Sweden and Australia are over-treating MS and by doing so they are exposing people who will eventually turn out to have benign MS to unnecessary risks associated with high-efficacy DMTs. Please remember that only a small minority of people with MS turn out to have benign MS. Therefore the non-Swedish-Australian or conservative approach to treating MS puts the majority of pwMS at risk of under-treating their disease to protect the minority. This could be referred to as the anti-vaxxer approach to treating MS; let’s not treat MS aggressively so that we harm nobody.
In comparison, the Swedes and Australians will be exposing a small proportion of their benign MS patients to unnecessary risks to offer the majority the protection their brains need from under-treated MS. This is like the public health approach to vaccines; let’s treat MS aggressively to improve the outcome of the majority and by doing this we are prepared to accept some collateral damage in terms of adverse events.
Another argument that is often used against the active-treatment approach of the Swedes and Australians is that if everyone ends up on high efficacy therapy what do you do next? I counter this argument by saying these patients are probably on high-efficacy treatment because they need to be on high-efficacy treatment.
The other issue that needs discussion is the variation within countries and even within MS centres. When I first saw the DMT prescribing data from Blueteq, the NHS high-cost drug database, I was appalled. There is such wide variation between UK centres in terms of DMT prescribing behaviour that even NHS England are concerned. It can’t be right that some MS centres have 80% of their patients on high-efficacy DMTs and other centres have less than 20% of their patients on these treatments.
Some UK centres don’t prescribe some classes of DMT. In fact, the latter may be illegal. There is in fact an act of parliament stating that NHS centres have to offer NICE approved therapies. Therefore refusing to offer and treat someone who is eligible for say alemtuzumab could be legally challenged. As a result of this variation, we started the Raising-the-Bar initiative to address variation in MS service provision across the UK. A national audit is the keystone of this initiative and all MS centres will be able to see how they are performing relative to the national average and other regional centres. Hopefully, this national audit data will act as the catalyst to stop the scourge of undertreated MS in the UK.
The audit data will be so granular that it has the potential to expose outliers at the individual consultant level. For example, if one consultant has no patients treated with alemtuzumab, cladribine or HSCT and his/her colleagues in the same centre has substantial patients on these treatments it may trigger a review of that consultant’s fitness to practice as an MSologist. I am sure many neurologists will be appalled by this suggestion, but this type of individual performance review is widely used in surgical specialities and will arrive in neurology soon. In fact, it already has in some countries. If you are an epilepsy expert and are not referring a certain proportion of your patients for epilepsy surgery every year then you will have your fitness to practice as an epilepsy expert questioned. Epileptologists have agreed that a small number of patients with drug-resistant epilepsy will benefit from surgery and if one of their colleagues is not identifying and referring these patients for surgery then they are not practising according to international standards.
My dream is that every MS centre in the UK will not only have access to their audit data for quality and performance review but patients will be able to access this data on a publically available website so that that can ascertain how conservative or active their MS centre is at treating MS. My vision is to have an MS-Advisor app modelled on TripAdvisor that will allow patients to review and provide feedback on their MS service. There is nothing like a bad review to change behaviour.
So if you have MS and think your disease is being under-treated you should ask your HCP for their audit figures, i.e. how many of their patients are on DMTs, how many are on high efficacy DMTs and how do their figures compare to their colleagues and to the national average. If they are not prepared to provide you with this data you can always put in a freedom of information request.
Yes, the Raising-the-Bar national audit is going to make it hard for participating centres to not participate in the audit and to ignore their own audit data. The objectives of the RtB initiative is to raise the standard of MS services for pwMS, to reduce the under-treatment of MS and to ultimately improve MS outcomes and the quality of life of our NHS patients.
So when I ask has your neurologist flipped; I mean has your neurologist adopted a more active approach to treating MS. Are they flipping the pyramid?
General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust.
It’s would be interesting to see Australia and Sweden’s average EDSS scores compared to the UK
Surely the treatments should be based on the severity of someone’s MS at the time of diagnosis, with all options available on the table.
I find it hard to believe that a life long disease that effects the most important organ in the body, usually diagnosed at a young age, sometimes it seems that it isn’t taken more seriously enough by some of the health care providers, this is a serious disease with serious consciences if handled wrong. Sometimes you have to fight fire with fire.
Good point. It will be interesting to determine if there is a difference between Australia and New Zealand as I understand they have different prescribing ethos. I could be wrong on this. I also wonder how long it takes for the info to trickle down as it has only been since about 2012 that high efficacy options were first line in UK.There were few options early on.
What happens after alemtuzumab? In CARE-MS I and extension you had alemtuzumab and then watch and wait and then beta interferon-alemtuzumab and then watch and wait. In CARE-MS II you had beta interferon (standard of care) then alemtzumab (watch and wait) and beta interferon, beta interferon and then alemtuzumab and watch and wait. Is there a difference in where people end up.
I guess we should say put your info where your mouth is. Has this been done at BartsMS?. However, I am sure it has been as I spoke to our neuropharmacist about Freedomw of information requests they thought some trusts do it others won’t.
Regarding FOI. We have FOI DMT fatigue as one data company was using this to get prescribing information from each MS centre and then repurposing it and selling it on to Pharma. This is an abuse of the FOI, which is why a lot of NHS Trusts are saying now saying no.
The app would be a fantastic idea for the newly diagnosed ! I was smart enough and scared enough when diagnosed last year to search out the most forward thinking neurologist just like i would do with anything in life. My local was awful and wanted to stick me on copoxane and forget about me even though my first relspase came on over a week hospitalised me with loss of movement in all limbs and six months later after two courses of steroids i had not fully recovered. Its been a year now and i self advocated to one of the most forward thinking neuros in the country and its a three hour round trip to see them and get my tysabri but i have the pleasure of being able to wobble around and feed myself now which i am to hold onto aslong as possible in full confidence that he has the same aim for me! Even when bringing up hsct he could not sound more positive unlike with the first neuro who said it was a pipe dream ! The postcode lottery in the nhs is awful i just feel so lucky for social media and blogs like this without which i would of been lost when diagnosed.
ts a three hour round trip….Thank COVID for COVID-19 as most neuros have now heard of tele medicine:-).
Its a post code lottery….I think the MS Society may have the information but not sure if they will let it out
Some symptoms need to be seen not spoken about… its alao hard to have a neurological exam over the phone. I dont really like telemedicine, as a patient i find it inpersonal and frustrating. Why do you think they wont release it ? Wouldnt you assume they would if it benefit pwms ? Its 3 hours each way btw 😂
Hi Dan, I’d love to know who your neuro is? I’m keen to find someone who will discuss HSCT with me. Thanks!
Please don’t use any names or places,
No my neurologist wants me to stay on glatiramer acetate and when I asked for ocrevus she proceded to tell me for 15 minutes why ocrevus is dangerous….. Furthermore she was very defensive when I started explaining my side of things…. Essentially she wants to keep me on it until I get another relapse or as I like to say it more brain damage…. For other readers glatect only has an efficacy of 30 % meaning you don’t even have a 50 % chance of stopping your next attack ie brain damage.
Knocking Copaxone or Generic Glatopa doesn’t help pwMS like myself.
I have been on Copaxone, now Glatopa and have been stable, no MS Exacerbations since starting shots in 2007. It’s extraordinarily simple, mostly covered by my insurance, yearly, now every other visits with my Excellent Neurologist at a Great Teaching Hospital. She trained with my other Great Neurologist at a different Great Teaching Hospital. I am a good judge of Doctors and have an open door if problems arise. I don’t want to start getting IV or more labs or other new and improved drugs. I’m 63 and need simple and effective. Not everyone will have my experience. We each are individual patients and deserve consideration of our individual needs and what works for us in consultation with a Great Doctor at a Great Teaching Hospital that You can Talk to, Listen to, Collaborate, Negotiate with, Share Honestly and Thoroughly and set goals, timelines and small talk to lessen the impact of any bad news
I think you prove that it is horses for courses. There is definitely a group of patients that do very well on GA; I would estimate about 1 in 5 do very well. I wish he could find out who these patients are before starting.
I was on CombiRx study and fortunately was in the 20%. Thanks for clarifying why I see it knocked. I wonder if it’s the daily or TIW dosers. Also how adherent were the failures? I wear my welts like a badge of courage, never miss a dose, same time every day. Thanks to close monitoring initially and dumb luck 😎
The issue is that it can take 1, 2, 3 or more years to find out if you are a GA non-responder and that time can be a lot in the brain of someone with MS. Finding the minority (20%) of GA-super-responders puts the majority (80%) of non or partial responders at risk of acquiring irreversible damage. This is why flipping the pyramid produces better results than the step-care or even rapid-escalation approach. It is a numbers game.
In the MS-Base database with step-care or maintenance-escalation approach to DMTs, the average time on each tier of treatment is about 4 years. So it can take many years to get MS under control with DMTs. This is the danger of not flipping the pyramid.
may I ask if those 1 in five would likely have been the 1 in five who don’t progress to the next stage?
Isn’t it something like 80% progress?
I queried coming off Copaxone, the conversation was shut down with no explanation. 🙁
Now you need another opinion. You Must have a Doctor who can Support your Decisions, Help You Analyze Your Options, Risks/Benefits of Each. Also Address Any Question You May Have and tell You the Rationale behind their advice or in Your case, a mandate. You have the Right to Self Determination.
Same here. First explanation was that my MS was no longer active. Second neuro just said “no way”.
Delays in starting treatments are wha triggers the paranoid patient mindset. The 2 worst internet sites discourage DMT makeup. They promote diet alone or LDN, or worse, HSCT or CCSVI. This is a ‘your neurologist is paid by Big Pharma and is corrupt’ attitude that poisons the relationship between the patient and the neuro. There are some excellent drug therapies now. This gets in the way of building good health. Yes, diet helps, but it is not a cure.
Or worse HSCT? The most effective DMT according to many nuerologista including Prof G
“There are some excellent drug therapies now”
Yes..but given time people still progress on them….
“The most effective DMT ”
No doubt it’s hsct but even where the Swiss do
it early in rrms they still find 20-30% progressing/non responding.
Which is better than Alemtuz/Lemtrada.
What can you do if your consultant refuses to discuss alemtuzumab or HSCT with you?
This will depend on where you live. You could ask for a second opinion, preferably at another centre. MS Centres tend to suffer from groupthink so if one consultant refuses alemtuzumab it is likely the other consultants in that Department will as well.
Of course I wondered how USA did… https://bmcneurol.biomedcentral.com/articles/10.1186/s12883-020-01882-2. I think it was easier with just copaxone. Here’s your box of shots. No monitoring. No fuss. Copay assistance.
Now it’s so complicated. I wanted to say your problem is the NHS, Socialized medicine. Bureaucratica Bean counters. That doesn’t explain Sweden’s good grades. I think it is partly funding. Partly that Doctor-Patient relationship. Information is Shared. Treatment Offered. Patient may decline or consent. Docs explain the risks and benefits. So many factors are in play. More patient Adherence data is needed. Did they here what I heard after “You have MS”? All I heard was Blah blah blah 😑 Here’s your box 📦
I’ve saved the EMSP to look at properly later, but after a quick glance I’m wondering why Germany has so many cases of MS – of course I don’t know what the figures are in terms of percentage of population. Also, is there any data on progression rates in Sweden and Australia? It would be very interesting to see patient outcomes as a consequence of their health systems / prescribing strategies.
252,000 Atlas of MS https://www.atlasofms.org/map/global/epidemiology/number-of-people-with-ms?gclid=Cj0KCQjwvYSEBhDjARIsAJMn0ljJWRqvkjCwddo7jtzcYZxpPhDoqFEdyo6GfiIJhD051LNcfwRz9t4aAj-VEALw_wcB
Thanks, MD!
I was diagnosed in early 2018 (Norway) in the first half of my twenties, presenting with weakened grip and numbness of the right arm, altered sensation of the right leg, parasthesias of the skull, bladder issues, >30 brain lesions and two relatively large C-spine lesions. I was told to choose between Lemtrada or Rituximab, of which i opted for the latter (cursed be the low-efficacy meds!).
Treatment was started within less than two weeks. I’m still very grateful for the efficiency of my neurologist. I’m also grateful for the fact that he was very blunt yet still caring, telling me that ”He knew this was a shock, but that I almost definetely had MS, and he wanted to put me on one of the strongest meds”. Unfortunately, I considered Lemtrada too risky because of the associated thyroid issues. However, this was a shock-thing. If I was given the chance to go back and make the desicion again, I’d do Lemtrada, so that I wouldn’t have to worry as much about the continuous (and possibly progressive) immunosuppression, which has been a problem. Especially considering me and my girlfriend want to have children next year, and I don’t want to have to fear my child exposing me for infections all the time. (Is this a common issue?). Anyway, my MS has been NEDA since diagnosis, and I’m still going!
What is with the yellow and red colour scheme?
I am seeing red 😉 I am keeping my new rose-tinted sunglasses for when I am feeling better.
Will all parts of the UK definitely have to sign up to this audit? Sometimes it seems that NHS Scotland follows very different rules. For example, you can’t just change your consultant or centre as seems to be the case in England.
Sounds very positive. The national joint registry would be a good example to follow.
For the record – whenever I’ve asked to be put on a stronger treatment I get told it is impossible due to blueteq.
Are you sure? Blueteq allows switching, but you have to fulfil the criteria for switching.
This is super Prof G. I’m so over this under treatment of ms bullshit. I had a relapse in 2018 and my Neuro refused to accept that I should move from Tecfidera to Ocrevus. Before that I had wanted lemtrada but the conversation was ongoing for so long that by time my Neuro agreed, the EMA had taken it away for people in my situation. It’s so disheartening as a patient to read your blogs & but then deal w the opposite on the ground. I eventually got Ocrevus but they made clear they didn’t agree with this. Now I want to change to tysabri but I can’t as no Mri changes. I’ve now asked for details on the size of slices of my scans (should be 3mm or less)and also the gaps between slices (should be no gaps). I’m learning so much. You have to question everything!
“I think you prove that it is horses for courses.”
Yes..and the best horse wins the race.
Quite a few have had hsct in their seventies..hsct non-myelois far less taxing than a BMT.
“I don’t want to start getting IV or more labs or other new and improved drugs. ”
What’s wrong with IV….all you do is sit back and relax..?
“I’m 63 and need simple and effective.”
Well since you are stable…better I guess to just count your blessings…But there was a uk woman in mid 70’s who started to progress to spms and arranged to go to Russia for hsct and her u.k. neuro told her she was being selfish and she should not pay for treatment and leave that money to her grandson. She told him..it was her money to spend and ..and in terms of paying for treatment….She asked have you ever worked one day for free in your whole career..?…So of course I expect to pay for hsct treatment in Moscow.
You and I have the Right to Self Determination. You go Your Way, I will go mine.
Good luck in Moscow 🇷🇺
“Good luck in Moscow 🇷🇺”
Slight miscommunication here..not going to Moscow..myself.
but others here do..It’s a viable option/treatment for ms.
“HELEN STORR
October 17, 2019 at 4:21 pm
Read my post,Professor G,I’m a success story,68 years old SPMS,EDSS 4.5 I have had MS for 24 years,HSCT done in Russia.Helen”
Caneco
Portugal in 7 ?
Something not right
Lolllll
Dr Joachim Burman neurologist
Uppsala University, Sweden
“More patients per capita undergo
transplantation in Sweden than anywhere
else in the world; why is this?
We had some very positive early
experiences with this procedure that
prompted us to move on to the development
of a clinical programme. In Sweden, all
physicians can prescribe and use any
approved drug with hardly any constraintsaround for decades, we do not have to file
a lot of paperwork and navigate through
bureaucracy in order to use this treatment.
In addition, healthcare in Sweden is
publicly funded and not primarily based
on individual performance. That means
that I have nothing to lose by referring ‘my’
patients to the haematologists who perform
the actual transplant. Therefore, I can have
the patient’s best interest at heart at all
times. Over the years, we have been very
lucky to collaborate with enthusiastic and
open-minded haematologists, radiologists
and laboratory personnel.
http://www.internationalinnovation.com/build/wp-content/uploads/2015/05/Joachim_Burman_Intl_Innovation_179_Research_Media_00.pdf
On the down side Sweden
Had almost an anti-vasser approach against sars-cov 2 epidemic
Let it rip
No. This is completely unrealistic. When you have MS you are ill, your brain is faulty and you’re scared. The last thing you should be doing is having to challenge the “system” or a neurologist with a god complex to get the best available treatment. I have personal experience of being told my ‘case’ was ‘mild’ and asked ‘why I was shuffling when I walked’ I knew it was going badly wrong but was patronised by my paternalistic and dismissive neurologist. I had to borrow and demean myself fundraising / begging to get hsct privately. My pre-treatment mri showed exactly why I had been ‘shuffling’ – diffuse spinal demyelination which hadn’t been picked up on my last scan. A scan by the way which only included my spine because I asked my GP for it to be done.
I’m fortunate that progression has halted for me atm, but I’m broke after having to pay for private treatment and am seriously disabled because the nhs didn’t treat me in time. So now, having worked all my life, instead of contributing to society through my work and taxes, I live on a pitiful £113.55 a week ESA and had to fight tooth and nail and demean myself with sharing incredibly personal details to access PIP. Then I had to fight the hospital I’m nominally a patient of, to get funding for Modafinil which is the only thing that works to keep me awake.
This is all completely unfair and there is no reason for the most effective treatments to be withheld from MS patients. It is unethical. It is a disgrace. This is the responsibility of the NHS and the Neurology discipline. It’s time to take real action that makes a difference for the patients.
A neurologist deliberately withholding a drug should focus on first doing no harm.
No. MS patients by definition have an acquired brain injury and can not be expected to have to fight for treatment. They are entitled to expect the best available treatment to be offered to them .
There is no excuse for the current negligent and unethical behaviour so many of us experience from our neurologists.
If I had received the most effective treatment early, as I requested, before acquiring disability, I could still be a functioning person contributing to society as I did all my working life. Instead, my neurologist’s paternalistic and dismissive approach did nothing to stop my very rapid decline to edss 6.5 and at 50 I was on the scrap heap.
So now I’m broke having had to pay £50,000 for hsct and instead of working as I always have, I live on £113.55 a week contribution based ESA. The PIP application process is totally demeaning too. My retirement now looks pretty bleak in financial terms.
In all likelihood this level of disability could have been avoided, but my neurologist took that chance away from me, so there will always be the question of “what if’ I think that is disgraceful and criminally negligent
So again I say NO. It is not the MS patients’ responsibility to sort this out..