Supporting the NHS & social medicine

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Why don’t you support private prescribing and HSCT abroad?


The social media response to yesterday’s Barts-MS Hangout on HSCT has been rather mixed. A lot of commentators are being critical of us for creating too many hurdles regarding the access to HSCT and that we shouldn’t stop our patients going abroad for treatment. From my perspective, going abroad or to private units in the UK for HSCT is private healthcare at its worst. The countries who offer private HSCT, on a fee-for-service basis, are some of the countries with the largest health inequities in the world. These private HSCT units are in it for the money and hence are not that selective in whom they will treat. Can you pay? If you say yes, then you can be treated next week, but only after you put down a large deposit.

The founding principles of the NHS and other socialist healthcare systems are that healthcare is a basic human right, therefore it should be free at the point of access and it must be equitable. Private HSCT, private prescribing and even off-label prescribing undermine these principles and this worries me a lot. This is why I can’t and won’t openly support my patients travelling abroad for HSCT; you need to understand that when it comes to access to healthcare I am card-carrying socialist.

We at Barts-MS have been pushing our Essential Off-Label list to improve access to treatments in resource-poor environments. The problem with this is that adoption of off-label prescribing is patchy at best and creates pockets of prescribing in a desert of limited access. The latter creates massive variances in prescribing and inequity. This is why we decided a few years ago to hand the baton of promoting an Essential DMT List, including HSCT, which is on our list, to the MSIF (Multiple Sclerosis International Federation).

The MSIF is an umbrella organisation representing all of the MS Charities from across the world and is therefore in the best position to endorse and promote an Essential DMT list. The MSIF made the strategic decision to go via the WHO Essential Medicines List (WHO-EML). Over the last 2 years, we have actively been working on this and I have had the privilege of co-chairing the MSIF WHO-EML Taskforce with Professor Brenda Banwell. We managed to get an international consensus on three DMTs (glatiramer acetate, fingolimod and ocrelizumab) to be considered for the WHO-EML. Please note HSCT did not make the shortlist mainly because we are trying to address the unmet need in resource-poor countries. Our application is now online and we hope the wider MS community get behind our application. Our application is more than about these three DMTs, it is a political campaign to get the WHO and the world to realise that MS is a problem across the globe; MS is not just a rich world disease. For example, did you know that there are more people with MS in India than there are in the UK?

So to our critics out there, we at Barts-MS have a wider responsibility to the MS community and to support the NHS and the pwMS living in the UK by trying as best we can to uphold the founding principles of the NHS.

About the author

Gavin

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

41 comments

      • No, it is ocrelizumab. However, there is a large section on using Rituximab in place of ocrelizumab if access to the latter is an issue in any specific healthcare environment. Ocrelizumab made the short-list because it is the only DMT licensed for PPMS.

        Please note we were advised to limit the number of drugs to as few as possible to have any chance of getting MS onto the EML list.

        Cladribine was not short-listed as it is not licensed across the world and the real-life evidence of its effectiveness was lacking. Maybe next time the EML review comes around every 2 years.

  • It’s fine to have principles and it’s all very noble. Idealism is great, but it doesn’t reflect the real world and without action it’s pointless. More people in the position to influence change should be making a stand and doing something pro-active. Our NHS is totally mismanaged so has failed to keep up with the changes in science, society and expectations since its inception 70 years ago. We can’t hark back to the good old days, we have to adapt to changing needs.

    There are some huge elephants in the room though:

    1) When an individual is in a situation that the existing system can’t or won’t help, they don’t have time to wait for the change. What else are they to do but seek out private services. Sativex is a prime example of a drug that can improve quality of life / ease symptoms but has been deemed not cost effective by NICE. It is prohibitively expensive on private prescription so pwMS become likely to seek out the illicit alternative. Modafinil is off licence, but it works and if the licenced alternative doesn’t, would you really condemn someone to a life of misery or would you trust a doctor to make a balanced risk-benefit analysis for their patient ? The problem is that the NHS is broken and thanks to commissioning processes we have the all too familiar postcode lottery, combined with inconsistent application of guidelines by consultants.

    2) You are making a broader point which I partly agree with about sourcing services abroad or privately, but we are where we are and those who can always will. We might as well accept that and figure out a better way to help those who can’t.

    3) I had an unusual situation in that I was accepted for HSCT at Kings but following due diligence I had a dilemma:
    – timescale, the preparation and admission process takes for ever and I was likely to have to wait at least 6 months from acceptance. I was deteriorating very fast and already at edss 6.5 so could easily tip over beyond the threshold for treatment;
    – infection rates, I had been in touch personally with several people and knew of others suffering all kinds of infection problems at Kings from regular respiratory bugs up to and including sepsis. It doesn’t inspire confidence either in general hygiene or aseptic procedures;
    – protocol, it is an unnecessarily long drawn out timetable which, due to in-vivo conditioning extends neutropenia and consequently increases the risk of infection; patients are sent home to do their own filgrastim injections prior to harvest (not trained in aseptic processes and injecting themselves when potentially neutropenic); after harvest, insertion of the PICC or Hickman lines is done as an outpatient process and then the patient can wait up to a month for a bed increasing the risk of infection; rATG is a really vile drug, it’s old and hard to tolerate, plus comes with the risk of triggering dormant EBV. Having suffered badly with EBV between ages 19 and 23 it’s not a risk I wanted to take. I know it’s part of Dr Burt’s protocol, but there was an alternative for me to consider in centres using Rituximab instead.

    4) I take issue with your sweeping generalisations about hospitals abroad. When it comes to inequity to the people of the country, I see the benefit of foreign patients paying privately because that money could be directed to help the very people you are talking about. With regard to standards of care I think it’s time we got off our Colonial high horse and accept that the NHS is not the best health care provider in the world.

    I’m guessing you haven’t checked personally and that you are making assumptions about the quality of hospitals abroad. However, I experienced a world class hospital in Moscow and it outstrips my NHS hospital experiences by a mile. It was pristinely clean, individual rooms with air locks, filtered air and water, well organised, up to date equipment, thorough, professional, attentive and personal. Even Consultants who worked weekends. I had the same service as the Russian nationals being treated in the department.

    The only thing I paid up front was a more than reasonable fee for the pre treatment health testing. I don’t know anywhere in the UK that would charge just $1,500 for the most thorough general health examination I have ever experienced, including MRI, ultrasound, X-ray, spirometry, neurological assessment, ecg, bloods. The neurological assessment was the only one I have ever had done properly. In hospital here, or with my MS neuro it has never been more than cursory. The MRI results were far more detailed than anything I have had before too (and I came home with a disk of the scan as a matter of routine). I also know that following pre testing patients who are not well enough to tolerate HSCT have been refused treatment.

    I didn’t pay the treatment fee until it was confirmed that I was good to go. During treatment I developed pulmonary oedema. Within 10 minutes of my buzzer I had the hospital on call doctor with me and was hooked up to an ECG, my consultant was called in from home on Saturday night, 2 nurses just for me overnight, plus ultrasound, CT scan on Sunday morning. All this with the correct medication meant that I was absolutely fine within 48 hours. Guess what, there was no extra charge for any of this, just world class care.

    When I was in Worcester after a relapse I spent 2 nights in the medical admissions unit before getting to a ward, it was 3 days before they could manage an MRI and lumbar puncture ! In the car home on the way back from Moscow (where aseptic procedures were sacrosanct), I heard a news report that Worcester hospital had been seriously underperforming for some time. They were actually pleased that their hand washing had improved from red to amber between April and August !!! We need to get our own house in order before criticising others.

    The NHS could learn a great deal from other nations’ health services. It’s time our resources were used more wisely. Incompetent management wasting billions on PFIs is of far greater significance than any other single issue challeninging the NHS. If we got this in order, then, considering I have saved the NHS a vast amount of money by funding my own treatment, freeing up resources for someone who can’t, perhaps treating my spasticity with Sativex may be deemed cost effective.

      • I am 18 months post treatment tomorrow. So far no progression. Pre-HSCT most days it was a struggle to lift my head off the pillow. At present I am on a solo trip UK to Norway, visiting the now lifelong friend I met in Moscow, having HSCT at the same time. A truly special bond that can’t be broken. We both have our lives back. Certainly not a miracle cure,we both still have an edss of 6.5 but our lives are a whole lot brighter. We even get really good days !

        All in, including business class flights with Aeroflot both ways, visa (which includes a trip to London for biometrics), hotel, incidentals etc you’ll need to budget £50,000. The treatment is €45,000, visa for 2 people about £450 and you can shave costs off the rest if you need to.

    • I believe both the Russian and Mexican hospitals are private and charge enough taken their economy to offer this quality of services. So, an unfair comparison to NHS. I really don’t think that this is how an average hospital in these countries is.

      Also, all national health care systems have to deal with the pharma mob that constantly increases the prices of drugs (see for example the rise of DMT prices or the Ocrevus scandal). This is a war with neoliberalism and NHS is just another victim.

      I agree with ProfG when he supports a national coverage of the treatment but he is acting like an ostrich when he doesn’t see the unmet needs of patients to be treated right now, safely and without these unbeliavably strict criteria.
      Because as of now NHS and HSCT at the same sentence sounds more like a joke.

      • There is HSCT and HSCT not all protocols are the same, they will likely have different benefit risk profiles.

        For some you are essentially getting a DMT as the conditioning dose is not enough to do much

    • I couldn’t agree more with your points. Proff G has right intentions and all points are valid but the Nhs on a broad spectrum looks at cost first and doesn’t consider the cost savings that can be achieved by treating early to avoid spiralling costs later on the patients journey. This comes from me who has had Alemtuzumab which costs a lot but had a been treated earlier would I have needed all the other things to bring some QOL? I work within imthe NHS and it’s mind blowing on a daily basis the waste that goes on.

      • Not necessarily cost only, but cost-effectiveness. This is why the NHS will fund a direct head-2-head study between Alemtuzumab and HSCT to answer this question. Let’s hope we will get the go-ahead for the trial in the next few months.

        • This trial has been ‘about to happen’ for over three years now. How close are you to actually getting the go ahead? Also, it’s another trial for RRMS, isn’t it. We know that HSCT can and does halt progression in SPMS and PPMS (and numerous patients with progressive MS have been treated on the NHS with HSCT). This trial will leave those progressive patients out in the cold somewhat, won’t it? How are you going to evaluate the effectiveness for progressive MS? The Burt trials were focused on RRMS too. At the International HSCT Symposium in Sheffield in 2018, Dr Burt presented 2 case studies – one was RRMS and one was SPMS. They were both EDSS 5.

          5 years Post HSCT, the EDSS of the RRMS patient had reduced by 2 points but the SPMS patient was still EDSS 5. Dr Burt intimated that HSCT has been successful for the RRMS patient but not for the SPMS patient. From a patient’s perspective this isn’t the case. Many progressive patients would welcome the opportunity to halt their progression in this way – they don’t necessarily expect a reversal of their EDSS. This is the mentality that needs to change, and this is why it’s so urgent that we focus on the progressive patients and not just the RRMS patients. Most of the patients that go overseas for treatment are progressive patients – this trial won’t change that factor at all. What do you propose we do for progressive patients, Gavin? In the HSCT community we are seeing the results of HSCT for progressive on a daily basis – it’s gone way beyond anecdotal.

          I’d really appreciate your thoughts on this one, Gavin, because I think it’s really very much at the heart of what we at AIMS are fighting for.

  • I heard on the news that a new proton beam therapy unit is opening in my area today. A few years ago, the child of a friend of mine was sent to USA (paid for by the NHS) because that technology simply wasn’t available in the UK yet. The same applies with certain HSCT centres overseas (and I’m talking specifically about Mexico and Russia) in terms of sheer experience and expertise. HSCT for MS is still in its infancy in the UK, very few people have been treated on the NHS (and, embarrassingly, not a single person from Scotland or Wales!) These clinics overseas have been performing HSCT for many years and are incredibly proficient. They are most certainly not in it for the money or any kickbacks (I’ve met both Dr Federenko and Dr Ruiz, Gavin, and have talked at length with them, so I think I can make that judgement. Have you spoken with either of them? Your post suggests not).

    Like you, I feel very strongly about the NHS, but when it comes to HSCT the system is failing people with MS. We aren’t talking about rich people without a care in the world who are swanning off to these centres because money is no object. This is a last resort for people – they are doing whatever they can to get the treatment they’re denied on the NHS – even if they’re accepted it’s around a year for the process to actually start! Time is brain! The hygiene and infection level in the UK is far worse than it is overseas (Mexico and Russia) and that’s a fact.

    My husband was lucky enough to have HSCT on the NHS for SPMS in 2016. He was the 17th person to receive it and one of the first to be treated for SPMS. He also had no active lesions or T2 lesions and was EDSS 6.5. He wouldn’t be accepted now because the criteria are tighter. He had no major issues (other than a flare up of EBV which is unheard of in Mexico and Russia because of the different protocol) and we will be forever grateful for the care he received. His progression (which was very rapid) has completely halted and he’s seen many symptomatic improvements too. I’m very grateful that we didn’t have to get ourselves into debt and I wish that more people could have our experience. But the fact is that they can’t, so what are they supposed to do? Sit and rot or do everything they can to access a treatment that has been proven to halt progression time and time again. If we had had to pursue HSCT abroad, we would have had no hesitation.

    It is very arrogant to assume that these particular centres aren’t up to scratch. You couldn’t be more wrong.

    • Not sure about Mexico. Dr Basil Sharrack who spoke at the Nurse MS@TheLimits meeting last Friday was of the opinion the dose of cyclophosphamide used by the Mexican centre was sub-therapeutic according to most HSCT experts. They also follow the HSCT with rituximab therapy. Is the treatment effect due to HSCT or Rituximab? This protocol causes major issues because patients come back from Mexico with instructions for follow-on rituximab, which we can’t give them under the NHS. At least with the Moscow unit, there is no follow-on treatment required when you return to the UK except for the monitoring.

      Please note HSCT is not some magic procedure; our haematologists have been doing HSCT for decades and have a lot of experience doing it, albeit in other diseases. There is no need to go abroad because they have no experience.

      It is a great pity the vast majority of Russian and Mexican pwMS can’t access HSCT in their own countries, because they can’t afford it. An interesting paradox?

      • Oh now come on Gavin. Please double check your sources. Mexico hasn’t been recommending follow up Rituximab for a very long time now! The protocol changed quite some time ago, as you’d know if you’d properly looked into it!

        A haematologist who has been administering HSCT for leukaemia patients isn’t automatically an expert in administering HSCT for MS – there are a lot of anomalies, surprises and differences. Talk to Majid Kazmi – I’m sure he will be happy to put you in the picture.

        The NHS can and does administer Rituximab to NHS patients who have received HSCT for MS but only after HSCT if EBV reaches dangerous levels (which it regularly does in the UK.!). What you mean is that we can’t / don’t administer it as part of the HSCT protocol in the UK.

        • Re: “What you mean is that we can’t / don’t administer it as part of the HSCT protocol in the UK”.

          Basil Sharrack implied that Rituximab was not part of the HSCT protocol per se, but the follow-on treatment after immune reconstitution when EBV reactivation risk is low.

          • Good grief… please STOP listening to Basil Sharrack for advice on HSCT protocols for MS. He has been riding on John Snowden’s coat tails for enough years already. TALK TO THE HAEMATOLOGISTS.

            The same dose of cyclophosphamide is used in USA, UK, Moscow and Mexico. 200mg/kg is the gold standard and it is embarrassing that anyone in the UK would call that dosage into question.

            People fundraise for years to be able to afford to travel overseas for HSCT. They remortgage their house, cash in the pension plans, sell anything of any value.

            Please do not bring wealth or socialist principals into your arguments. Stick with the facts; HSCT for MS in the UK has been 100% patient driven. I can absolutely guarantee that fact as I was the FIRST ever patient seen in Haematology at King’s who ASKED for HSCT for MS. I would have been King’s patient #11. The previous 10 patients treated had all been given HSCT as lifesaving treatment.

            We patients are incredibly well researched and know our facts from the fiction frequently spouted by various disinterested Neurologists. We don’t just talk about HSCT… we all live it on a daily basis. My advice would be to work with us, not against us…

          • “Basil Sharrack implied that Rituximab was not part of the HSCT protocol per se, but the follow-on treatment after immune reconstitution when EBV reactivation risk is low.”

            Half right. It’s used when the reactivation risk is high – ie when the immune system isn’t dealing with the reactivation. King’s have EBV reactivation of around 80% after HSCT, but most will be able to clear this without intervention. Those that can’t have Rituximab infusions.

  • I applaud your principles. And theoretically, it sounds great. The problem is that the realities of individuals can be very different to your experiences. You are a highly intelligent, well-educated, successful doctor. The NHS, I would imagine, treats you with respect. But as an uneducated, working class individual, with lifelong disabilities, the NHS has spectacularly let me down. The NHS has destroyed my entire life through a catalogue of misdiagnosis, mistreatment, neglect, and negligence.

    The NHS wouldn’t believe that I was physically ill. It insisted I was mentally ill and had Chronic Fatigue Syndrome. Dozens of NHS professionals from numerous services over decades. It tried to section me for ‘self neglect’ and ‘deskilling’ myself.

    So I continued to deteriorate, had no treatment, and the NHS continued to put me through endless trauma due to it’s firmly held belief that I was making it all up.

    In 2017 I finally made the difficult decision to give up on the NHS. Through research I had diagnosed myself as autistic, with Non-24-hour sleep–wake disorder, and probably MS which I had had for between 20 and 30 years. The NHS had spent years refusing to refer me to a neurologist, a sleep specialist, or for an autism assessment. GP’s told me there was ‘no clinical reason’ to refer me to a neurologist.

    I found which doctors to see and saw them privately. I live on benefits, so I put it all on credit card.

    I was right about everything.

    My theory about what the NHS did to me, is that because I was autistic since birth, undiagnosed and dysfunctional, in an abusive family, they couldn’t see past that. My life has been like a horror film. Weirdly, they couldn’t even see my autism. They just saw a neurodiverse person and wrote me off. But even if I had been mentally ill, which I’m not and they do now officially accept that, it wouldn’t have protected me from MS. Nothing protects one from MS.

    I also become a published author at that time, and somehow gained the confidence to pit my own knowledge and worth against the NHS.

    It was very easy to diagnose me with MS once I went private, it only took 2 or 3 months. I have every symptom and comorbidity. Google diagnoses my MS in seconds, and I had been diagnosed with optic neuritis almost 20 years ago. The MRI scan showed lesions, the evoked potential tests showed permanent damage to my eyes, and the lumber puncture I presume showed oligoclonal bands.

    So I now have a diagnosis of relapsing remitting MS, with active brain lesions and ‘significant cerebral atrophy.’ However, because I never had an MRI scan till I went private, and had no treatment, there is no prior proof of my countless relapses, and I haven’t been on enough DMT’s, so I can’t get HSCT on the NHS. I was put on Plegridy, but it’s made me more ill and my relapses have worsened. My neurologist says I’m heading into secondary progressive, and wants me to have Lemtrada, but they only do it as an outpatient and I can’t manage it due to my disabilities. They haven’t started using Ocrevus yet, here in the frozen barren wastelands of the North where I live. I have found no other viable treatment options.

    I at least now get medication for the symptoms.

    I’m not going abroad for stem cell treatment, I’m too sick and I can’t afford it. But I understand why people do. I truly hate the NHS for what it’s done to me, it would have been better for me if it didn’t exist. And now, ironically, after everything, I’m still stuck with no way to access treatment. But I am still so very glad that I got myself the correct diagnoses. The NHS was never going to do it, I would have died without ever getting the truth. And the truth has its own value.

    The disconnect between your experience, and the experience of someone like me, is so vast.

    Thank you for doing the webcast though, and I hope to see more.

    • Your experiences with NHS should become a Guardian or BBC article for class discrimination. I would contact them actually.

    • Thank you for sharing your story, Jay ..I found it very moving.
      It makes me so angry that you (and many others) are trapped by the system as much as by their disease.

  • First can I say thank you so much for explaining what is actually involved in the process of HSCT. I am 3 years diagnosed with RR MS.
    I was on tecfidera until my bloods made me change to plegridy. Currently doing well except for leg pain and fatigue.
    What should someone like me expect is a head of me? I think people get frustrated and come across aggressive because as one person commented we feel we are rotting with DMT at a slow pace but we could halt the process so what’s going to happen?
    Will the NHS be able to process the god knows how many people will want this treatment
    What if I look back at my life and have too much disease progression after I get my hsct cause I waited patiently in line for 10 years!
    If I was your son would u recommend I sit in line?
    And Keep on DMT?
    Hope this doesn’t come across aggressive genuinely a bit lost why people early in the disease before 2 relapses not considered

  • Firstly thank you to Barts Consultants for their time doing these hang outs, I managed to see half the online talk last night and found it very thought provoking. Consultants like Prof G are clearly keeping MS up there in the NHS as an area of focus and research in medicine for us all, so thank you.
    Regards the topic of HSCT I shall not enter as not fully educated on the topic but I am glad there may be this treatment as an option if, and when my current DMT starts to not be effective.
    Without these discussions, which I must stress Prof G is a NHS Neurologist (Noted the comments re: NHS) we would not be keeping our disease in the focus worldwide and progressing our knowledge base and potential hope of a cure or prevention of MS.
    Thank you again Prof G for your time on the hangout , after I am sure a long day seeing patients. I look forward to future MS discussions on the hangout.
    Can I suggest a future topic of the psychological adjustments post diagnosis of MS and how to live with the uncertainty the disease brings? Therapeutic interventions etc.
    Thanks again.

  • Thank you, thank you for doing The Hangout session!! It answered so many unanswered questions about HSCT. I’m looking forward to your future recordings. I know you must be very busy so I wanted to express my gratitude.

  • Thank you for taking the time to respond to some of the concerns raised online.
    I really appreciate your dedication to the NHS and its principles and in the main, would agree with your views. I have socialist values too and believe the NHS is the best thing this country ever did for itself.
    However, adhering to these principles is much easier in your situation than it is in mine. You are a well respected professor with the power to make life changing decisions for many people …I am an ordinary person whose life has been drastically changed by this awful disease …and I know it’s only going to get worse.
    Like many with MS, my road to diagnosis was a battle in itself. I suffered mild depression after the birth of my second child …once that’s on your medical records, everything is attributed to depression and symptoms dismissed as psychosomatic. Eventually I saw a neurologist, who was also dismissive.
    This experience has caused me to lose faith in the doctor’s who are supposed to help and treat me (very painful for me as both my parents were GPs).
    Eventually I was diagnosed with “Benign MS” (is there actually such a thing?!) then a year later “active RRMS”. Since then my EDSS has gone from 1.5 to 6 in less than 2 years. I live alone and struggle daily, I have had to reduce my hours at work and worry constantly about paying the bills, I see friends less and I don’t travel as I used to. I feel my life is slowly slipping away. I need to do WHATEVER IT TAKES to stop my MS progressing further and I need to do it NOW.
    My neuro is offering Copaxone, then a second line DMT if that fails (I’ve already failed Rebif) …I don’t feel I have time to go on this journey of escalation.
    I’d like to have HSCT on the NHS but, like many, don’t meet the current criteria. My choices are bleak …keep on getting worse (at some point life won’t be worth living) or abandon my principles, fundraise, sell my belongings and borrow to fund HSCT abroad.
    I’d love to know who devised the criteria for HSCT on the NHS and on what basis. From my perspective the criteria appear random and designed to exclude as many patients as possible from accessing the treatment.

  • Thank you for taking the time to respond to some of the concerns raised online.
    I really appreciate your dedication to the NHS and its principles and in the main, would agree with your views. I have socialist values too and believe the NHS is the best thing this country ever did for itself.
    However, adhering to these principles is much easier in your situation than it is in mine. You are a well respected professor with the power to make life changing decisions for many people …I am an ordinary person whose life has been drastically changed by this awful disease …and I know it’s only going to get worse.
    Like many with MS, my road to diagnosis was a battle in itself. I suffered mild depression after the birth of my second child …once that’s on your medical records, everything is attributed to depression and symptoms dismissed as psychosomatic. Eventually I saw a neurologist, who was also dismissive.
    This experience has caused me to lose faith in the doctor’s who are supposed to help and treat me (very painful for me as both my parents were GPs).
    Eventually I was diagnosed with “Benign MS” (is there actually such a thing?!) then a year later “active RRMS”. Since then my EDSS has gone from 1.5 to 6 in less than 2 years. I live alone and struggle daily, I have had to reduce my hours at work and worry constantly about paying the bills, I see friends less and I don’t travel as I used to. I feel my life is slowly slipping away. I need to do WHATEVER IT TAKES to stop my MS progressing further and I need to do it NOW.
    My neuro is offering Copaxone, then a second line DMT if that fails (I’ve already failed Rebif) …I don’t feel I have time to go on this journey of escalation.
    I’d like to have HSCT on the NHS but, like many, don’t meet the current criteria. My choices are bleak …keep on getting worse (at some point life won’t be worth living) or abandon my principles, fundraise, sell my belongings and borrow to fund HSCT abroad.
    I’d love to know who devised the criteria for HSCT on the NHS and on what basis. From my perspective the criteria appear random and designed to exclude as many patients as possible from accessing the treatment.

  • Thanks you for the Barts Hangout. I am 64 with very slowly but accelerating advanced MS. I’m afraid I could not watch it to the end when I realised that another potential route to stopping the progress of the disease would not be available to me.

    I was very impressed by the clarity and simplicity in the way the information was put over. I was unaware that HSCT is now widely available in the UK but when you moved onto the age restriction criteria for medical reasons I had to put the Youtube recording on pause and walk away.

    I am quite sure this method of disseminating information on complicated issues will grow with time . I caught up with the program via Youtube, I’ve got to learn about Google Hangouts

  • Curious why Copaxone has been picked over Tecfidera. Why an injectable over an oral drug? Tecfidera also has demonstrated more efficacy and has a good side effect profile.

    • I’m guessing your question links to my comment?
      There was a discussion about Tecfidera, however I have a very sensitive stomach. Almost all meds make me vomit (including Rebif and the flu jab!). Tecfidera has a known side effect of stomach upset, so it’s highly unlikely I would be able to tolerate it (I’m wondering about giving it a go though).

      • As someone who has active ms you are eligible for induction therapies such as Alemtuzumab (Lemtrada)
        I was offered Tecfidera, by a neurologist of the view I should be fine on it. I predominantly used this site to conduct research and then pushed for a referral to a centre that provides Alemtuzumab. I’d concluded I was prepared to accept the risks in order to benefit from the level of efficacy. I was strongly influenced by the idea of ‘time is brain’
        I’d like to recommend Vicky that you use this wonderfully informative Blog to assist you in regards to your best way forward with regards to treatment.
        Best wishes.

        • In response to your comment Fi – do you feel able to share your experiences with Alemtuzumab, the pros and cons? Have any of your symptoms actually improved? I have progressive MS and approaching 50 years of age. Some of the side effects listed seem very serious and I worry that my failing body would struggle to withstand such a potent DMT. Do you know if there have been any successful trials done with Alemtuzumab for people with more advanced MS, not relapsing. Thankyou.

          • Several reasons for GA making the short list:
            GA is safe in pregnancy
            GA requires no monitoring
            GA is not immunosuppressive
            GA has a very long safety database
            GA is now off patent therefore cheaper

            When it comes to the EML these attributes were thought to be important, particularly in resource-poor healthcare environments.

          • Hi Anon,
            I wish I was able to provide the information and answers you feel will be of benefit.

            Firstly, I had highly active RRMS before receiving Alemtuzumab in 2017 and 2018.

            Secondly, in doing my own research I was sometimes disconcerted by PwMS sharing their own experiences and knowledge of DMTs they had gleaned as if the information they provided was applicable to everyone. It is my view that sometimes the stance of PwMS can be as limited, or dare I say as ignorant as some clinicians!

            I trawled the internet for the 6 months I had to wait to see the neuro who agreed to my receiving Alemtuzumab and identified this site and research articles posted by the US NIH as providing some of the most accurate and detailed information.

            I recognise your concern about age as ProfG has highlighted how our bodies don’t deal with things as well the older we are, and I’m still awaiting with keen interest the results of the stastical number crunching he has requested following the article posted last Feb that DMTs don’t have any effect on the accumulation of disability post age 54yrs – I am now 55yrs old.

            The side effects are nasty but, at the time, my personal view was that the demon disease ravaging my body and brain is nastier. This however, reflects my individual psychology and quite obviously, my logic won’t necessarily apply to others.

            I debated replying to Vicky has I have, but I was concerned that she and too many others are victim of ‘dinosaur neuros’ blindly following the escalation model of treatment and indeed ignoring both the NHS criteria for treatment with induction therapies and the guidelines from their own national body!

            I hesitate to say this too, but if you have the financial means I can’t recommend highly enough seeing a neuro physiotherapist. I see mine every six months for £50 for an hour to an hour and half. That approx three hours a year has made a huge difference to my walking and balance, by doing the exercises given daily. My physio says she’s seen improvements in patients who’ve been told in their consultations there’s nothing can be done, they’ll have to live with it.

            So, I’d like to wish you all the very best and I hope you find some of the answers/information you require.

  • A nice -abroad- HSCT patient report (and some NHS!)

    “Wow. Just Wow. I have just been technically discharged by my Neurologist as he is so impressed in my recovery since my HSCT just over 16 months ago 😮 😀 😮 AMAZING NEWS!!
    We have agreed to see each other again in a year as the general recovery time from the procedure is about 2 years just to make sure things are still going as well as they are now!
    OK I have been put in to early menopause BUT for me that doesn’t matter, I have never wanted children
    He even described me and others like me who have been and gotten treatment as trailblazers whose experiences are helping the NHS and NICE to recognise the massive potential of HSCT! (…)”

    -The report is not mine and I don’t have rights on it.-

By Gavin

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