32 Comments
Jul 15·edited Jul 15Liked by Gavin Giovannoni

To your question: "what needs to be done to improve its efficiency and effectiveness?"

Far and beyond anything else - the thing that I think would have provided an effective care system for me was immediate access to stronger treatments and getting rid of the escalation model. For myself, I would have wanted choice between IRTs: High intensity HSCT (Bu/Cy), Moderate Intensity HSCT (BEAM-rATG), Low Intensity HSCT (Cy-rATG), Alemtuzumab + Low Dose Rituximab

Milder options at the gate (Ocrelizumab/Natalizumab) meant allowing the smoldering process to take root and for me, a modest period of only a few years of okay-ness until PIRA set in and the ineffecient/expensive/ineffective downward spiral and a prescribing and care cascade began.

As a patient I felt like my biggest inefficiency and loss of efficacy was fighting against the gatekeepers of the medical system to approve stronger and more efficient therapies early in my disease course. Had to fly around to many different neuros, deal with rejections, and change providers multiple times to get ALZ + myelo HSCT. As consequence both appear to have been offered too late. Had already lost reserve capacity and had so many MS-created problems that I don't think any health care system could reasonably be expected to provide an effective and efficient structure for wellness.

With the growing strains on the medical systems of the world I keep wondering why escalation therapy is still the model; if we hit harder with IRTs up front, wouldn’t that translate to far less neuro visits, infusions, physiastry, physical therapy, time spent on referrals, visits to other specialists, MRIs and brain volume tests, breakthrough disease, what have you? And all of this less strain on system, patient, and provider? We all have limited resources and keep thinking that the way to increase efficiency is to delay the start of the downward spiral and push the more care-intensive aspects of this disease farther into the future.

Beyond offering IRTs out of the gate —

1. I would love to see MS care evolve more into a partnership model where my input / values / desired treatments are more considered as input to the discussion. At present it feels like begging (usually unsuccessfully) to those who hold the keys.

2. I would love to see more training around smoldering disease and the fact that stable exam does not imply stable disease and brain volume. Noticing a lot of patients being told that they are experiencing “pseudo relapse” or are “being hyper vigilant / anxious” when in fact they are smoldering. Smoldering should be explained to patients from the get-go so they are not confused why they are getting worse (thank you for your excellent articles and publications on this - I refer others to to them regularly). Ideally the use of blood based markers like NfL, GFAP, CCL20, or PET scans could help provider/patient to see the same thing objectively. Until then, training providers to understand, observe, communicate about smoldering seems like a huge step forward.

3. As technology evolves, moving to a model where MS is treated first and foremost as a blood and/or viral disease (and measured proactively) instead of a neurologic one. It’s strange to me that we emphasize the brain and neurology so much in MS care, when blood and perhaps infectious disease are the source. It feels like we are measuring the disease only after damage is done and then scrambling to fix it or manage the complications retroactively, rather than getting ahead of it.

4. Liberty to try reasonably evidenced/safe treatments off label - e.g. reasonable case report data for the safety of Alemtuzumab+low dose rituximab to mitigate autoimmunity, case report data for TAF and HAART antivirals. Can we provide a better way for informed patients to accept risks for things that are out of the box but not overtly dangerous? ALZ being utilized so infrequently is a bummer to me as it appears safe if dosed with RTX and again, like it could keep many patients out living instead of in the clinic or MRI tubes.

I am sure there are many barriers to all of these - inertia, legal risk, medical ethics, politics, all of the above? Being on the patient side I do not know what holds up what, would love to understand more.

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Jul 15Liked by Gavin Giovannoni

So agree with 1 and 2! I would love to feel empowered by the medical system rather than being ‘done to’. My current neurologist doesn’t ‘believe’ in smouldering MS. My previous neurologist used the escalation model and yet another didn’t ‘believe’ in brain volume!!!

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Jul 15·edited Jul 15Liked by Gavin Giovannoni

Couldn't agree more on the need to be an active participant!

Had the same challenges with providers not acknowledging smoldering/BVL and hear many others encountering the same. I switched neuros repeatedly and (fourth try) found one who understood smoldering, took a more patient centric approach, and diagnosed my worsening correctly as PIRA. More recently started doing Octave tests which feel like a step forward - provides some sort of objective framework within which to measure and discuss smoldering.

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Jul 16·edited Jul 16Liked by Gavin Giovannoni

If I could have Alemtuzumab + Low Dose Rituximab for to reduce the probability of further autoimmunity I’d take it tomorrow.

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But this combination would be off-label and is only being studied at present. The only place for this combination is part of a clinical trial.

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Are there any theoretical benefits for doing this? And would said benefit offset the risk of continuous immuno-depletion?

Last, are there any trials planned arounds this in the UK/Barts?

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Jul 17Liked by Gavin Giovannoni

Jane, I understand. And have stopped expecting much of anything. I know my thinking is not what it was. I just keep pushing it. (But I’m “cured”. )

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I hear you!

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Jul 15Liked by Gavin Giovannoni

I qualified and started working as a doctor in the NHS in Scotland in 1983. There was a mad “preregistration” year. You could be on call from Friday morning to Monday evening over weekends, then through the week all day and every second night. To get some holidays you had to pay for a locum, often a student about to qualify. You learned an awful lot but senior cover was patchy. Mistakes were inevitably made and care was not optimum. It was wrong

As you progressed through the training grades things did ease off no longer being first line for nighttime work but jobs were still very busy. You stayed on at night and came in early in the morning. You studied for professional exams and did a lot of paperwork “in your own time” at home. You had been given an amount of work to do – responsibility for a number of wards, an outpatient catchment area, teaching and had to find time for research and continuing education. You saw your job as a vocation. That was your lot and you did it the best you could. The government and hence the hospital managers felt that they had to sort out all those consultants who were doing private work or spending time on the golf course in NHS time. These doctors if they existed were a small minority. My work life and that of my colleagues couldn’t have been further from that. We were tasked to diary our work because the new contract was to pay us for 4hr blocks of work called UMTs Units of Medical Time which was going to attract a fixed amount of pay. We did that. The managers would not believe how many UMTs we were actually doing and said that they would only count the hours that we did between 9:00 and 5:00pm. We had to fit caring for patients into that time or do it for free. We had been essentially doing that anyway but there was something in the way of turning us into something like “healthcare operatives” and not Doctors that demoralised myself and my colleagues.

That is when things changed for me.

Junior doctors coming up through the ranks now seemed to now have a different ethos. One afternoon I tried to encourage my junior doctor to come out on a visit to see a very rare and interesting case.

Me “You may never see this again”

Jun Doc “will we be back by 5:00pm?”

As I couldn’t guarantee that, he never did see the interesting case.

Wild things happened then Jun Docs did much less hours than we did at their stage but they covered more areas and could be more busy and even less safe. A patient could be looked after by 3 different doctors in a 24 hour period Each having to catch up with what was happening then hand over to another docto rafter . All times where communication could fail. Was this any better than the earlier flawed times. I’m not sure.

Then “revalidation” as you say a phenomenal amount of time spent telling someone that you are doing what you are meant to be doing and if you are not managing to do it would they please look at the resources you have been given and see where that might be the reason you are not.

We pay less for our doctors and other healthcare workers than many countries and our numbers don’t add up yet. You cannot throw resources at a broken system and expect it to heal.

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Jul 17Liked by Gavin Giovannoni

Great comment. Different profession, but way back when, I recall grabbing everything and everything my mentor threw at me, whenever. I don’t know what clerks/interns are like now. This really is mind boggling to me. Thanks.

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I was a Registered Nurse and Registered Midwife in a London teaching hospital at that time, now retired. I can honestly say that I had no idea that the Doctors I worked with were going through that. If it hasn’t already happened, there absolutely needs to be more inter professional understanding to allow for more effective partnerships and treatments.

Perhaps Prof can send an updated version of the article to Wes Streeting. The problem with most Cabinet ministers in this country is that they do not have the relevant experience relating to the department they are responsible for before making decisions, relying perhaps on non clinical managers entirely.

Political we must be and access to those individuals essential. Perhaps now, having been relieved of clinical time, could be that approach.

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Jul 15Liked by Gavin Giovannoni

Excellent article Gavin. The insight into the changed NHS culture certainly helps understand why there is such a sense of demoralisation.

Your article about the future of neurology is fascinating. It would be a real sea change for the neurologists I have met - not good at listening or empowering and dismissive of patient concerns/requests. Certainly not a holistic approach!

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Jul 15Liked by Gavin Giovannoni

I look forward to reading your article but the figures you begin with mask the fact that from 2010 the NHS annual budget increase was QUARTER what it had been on average since its inception (c 70 years) AND teams have been demoralised and suffered huge retention problems because of an ideological drive to privatisation (begun under a Labour government) meaning collaborative, cumulative practice development has become very hard. This may now have gone too far to be corrected, what with punitive extraction clauses and agreeements to corporate courts able to sue goverments for anti-competitive policies protecting citizens. The former government liked to put GPs and junior doctors in a bad light to the public, with the help of most of the press. It's a wonder well-motivated staff stayin the NHS in such a de-motivating system.

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Jul 17Liked by Gavin Giovannoni

Yes. If I recall it was Blair’s New Labour, was it not? I have heard him speak and it is my impression that he is spearheading consultation for privatization. (I don’t know what the legal aspects are you refer to but would be interested.) Heaven help the NHS.

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Jul 15Liked by Gavin Giovannoni

Thank you for your insights!

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I’m laughing (thank goodness) because I’m old enough to remember both “New Labour” and the Bush/Blair show. I roll my eyes. (Clearly, we know who the brains of the outfit was (other than our Cheney that had no heart, lol) Is this political??

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Jul 16Liked by Gavin Giovannoni

I agree with so much of what you say in the article. I will add that from a personal perspective 1) there are too many separate companies running many aspects of the NHS, where profit comes before health. 2) the cost cutting around support staff which started in the 1990s or before is just plain stupid. Let admin staff do the admin, and medics look after patients, use the right skills in the right place. 3) AI has a place in modern medicine, but its not the whole picture as its taught patterns based on the norms, you still need humans to see the outliers, you need human experience 4) we need to get back to being patient centric, treating the patient and not the illness/disease 5) we need the old fashioned community hospitals where people can go to recover from the acute medicine/surgery rather than staying in the large hospitals ( bed costs in the smaller hospitals was always so much cheaper in the past), so basically your social care model, not ready for home but doesn't need a large hospital setting. 6) we need to reduce the reliance on agency staff and employ more bank and permanent contract staff.

Low morale of both patients and NHS staff is the direct result of a running down of the NHS, a deliberate policy to push more people into private health care by governments run by politicians with shares/pieces of private health care

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Couldn’t put it better. Private health care is simply awful.

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Jul 17Liked by Gavin Giovannoni

I’m never afraid of getting political. The privatization of medicine, as has marched on here in the states is deadly. Whenever the goal in medicine is to “save money”, the system is bound to degrade and implode. The medical industrial complex here is incredibly wealthy, and that wealth does not benefit doctors, patients or medical infrastructure. As I recall, electronic medical records created under the Affordable Care Act were ostensibly for the patients’ convenience. In my opinion, it created masses of paperwork for doctors and the myth of patients being able to access all of their records fell quickly. It was, however, an absolute boon to the insurance industry. (Which is why I say if we map the patient’s genome, it will handily exclude treatment for “preexisting conditions” here.) There are areas in cities in the states where one might obtain “coordinated care,” however in my opinion this is not the norm. And neurologists are few and far between in most areas. Not only is the debt load for medical school impossible, but physicians are now primarily independent contractors. What a deal. Where I live there is one long standing public hospital managed by Tenet, which has had a management agreement for many years. Strikes lately have been due to the purposive running down of the facility so they can buy it for a song when the next management period is up. The nurses have documented rats in the ceiling in the ICU. This is the medical business, they employ administrators paid handsomely to keep costs and staff down. In addition, private equity has bought out anaesthesia groups, ambulances, physical therapy, ER/ED. How does this function? It doesn’t. As a person with smouldering MS, I would appreciate being taken seriously. But I don’t see that happening here. A certain age? So sorry. There are no GPs to even coordinate care, much less neurologists. This worsened steadily through increasing privatization. And now, physicians can “opt out” of accepting Medicare, a fabulous 50+ year old federal program for retired and disabled Americans which is now mostly privatized. (Medicare is quite sanguine about this: just find another doctor.) Legal malpractice means nothing, by the way. Your worth is earning capacity. Just wanted to add that. Privatization and medicine are mutually exclusive. But that’s just my two cents.

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Jul 18Liked by Gavin Giovannoni

It really is unbelievable here in the US.

Too much money is involved so nothing will change.

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The money is enormous. The worse the CEO is, the more he gets when they give him the boot. I’ve stopped trying to understand that one, unless it’s a tax dodge.

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Jul 15Liked by Gavin Giovannoni

By sheer coincidence, I read this article whilst listening to this monologue in the background! (p.s. I did not search for a video of this kind at all. The youtube algo suggested it to me - I was bored and clicked on it):

https://www.youtube.com/watch?v=25LUF8GmbFU

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Jul 17Liked by Gavin Giovannoni

I’ve read this article twice. The question you ask is really beyond me as a patient. I do agree all Drs and clinical staff need to follow their own lifestyle advice.

I have had a shortish experience of using an NHS computer system. I found it really stressful, I was always ringing the IT department. I spent as much time on the computer as with my clients. Part of the reason I stopped my role was because the system was stressful.

My partner worked for years in one of the countries very large departments and their computer system was pretty unreliable, they would just keep bolting bits on, a lot of time wasted again. Man hours paid for by tax payer. Didn’t matter if it was labour or Tory really. So maybe investing in better IT systems that GPs can always access to see hospital notes. I was impressed today to receive a neurology appointment letter by email instead of post. It isn’t my MS neuro but headache neuro. I’ve thought for a long time postage of 3 pages of paper for one appointment is crazy. This is followed by a text reminder. I think, if managers took everything back to how we would run our own finances at home they’d save a stack. I was taught look after the pennies and the pounds look after themselves. Not a cure, for NHS woes but it might help cut back wastage.

Maybe someone could claw back some of the PPE wasted funds from lockdown. Some wealthy people got wealthy on the NHS. Whilst, the ordinary person got financial penalties for the smallest failure to comply.

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Jul 16Liked by Gavin Giovannoni

Aside from the password security that has recently been introduced I really do enjoy reading your blogs.

I had intended to just say thank you for another brilliant article but I’ve got wrapped up in clearing security

Really infuriating but at least I don’t have to confirm the number of bridges, steps or motor cycles Or prove that I am not a robot. But it still means that it is a destruction from praising your very good and helpful blogs.

We see these encouraging headlines that a drug has been passed by the the NHS.

How long before the new Ocrevus treatment is made available to those MS patients who need it

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Re: "Ocrevus treatment"

It has been available on the NHS for patients with active relapsing and primary progressive MS since 2018.

https://www.nice.org.uk/guidance/ta533

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It's my understanding privatisation contracts are long (e g 40 years,) lack review mechanisms and have sunset clauses that make it financially extremely difficult to leave early. And the new govt doesn;t seem to have appetite for reducing privatisation as that could mean borrowing, with its problems. Last comment on this I promise.

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deletedJul 30
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Yes, there is some work on leukotrienes in MS. E.g. https://pubmed.ncbi.nlm.nih.gov/11903112/. So they are a potential target in acute inflammation and possibly smoldering MS. However, the likelihood of a pharma company taking this forward is lower due to the difficulty in doing trials in smoldering MS.

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