In an era when high-efficacy DMTs are increasingly being prescribed first-line, MDTs should be changed to focus on patients wanting to start low—or moderate-efficacy DMTs. Yes or no?
Yaaass! Go MDTs. Helps spread best practice, makes sure the dinosaurs are kept in check, gives MSers a better chance at DMT if there's oversight of decisions.
I actually don’t know, but I suspect it was. Also, the MDT meeting could be presented with an evidence based clinical/ care pathway - the swiftest way to establish agreement and initiation.
I had my first experience a few months ago of my first face to face mdt at the hospital for neurology and neurosurgery in London in the walking clinic. I was hoping to get a dmt to improve my worsening walking and balance, Famprya.
I felt a bit intimidated with 4 people in front of me. What upset me though was their assumption that I had little spasticity. My PPMS has left me with debilitating spasticity and it’s getting worse. I left very upset and disappointed. Although I realise my ocrevus treatment had behind the scenes mdt involvement I still cannot believe how the latest one ended up. It has done more damage than good and im left worse of than I was before it.
I just underwent HSCT (Cytoxan/ATG) as a frontline treatment last month. I am 29 and at an edss of zero despite numerous brain lesions and 1 spinal lesion. Recovery from the procedure itself has been going well so far.
Going forward, what lifestyle adjustments/diets/supplements/off label medications, do you think I should adopt or ask my doctor about? Are there any drugs currently being evaluated that I should keep my eye out for? I am a lifelong athlete so I will continue to exercise regularly ofcourse, just wondering if you had any insight into my situation.
I have a letter dated 1st February 2024. On one side the Consultant Neurologist writes to me to say, "We have reviewed today the MRI scan performed in November 2023.....This makes you eligible for DMT for SPMS that shows MS activity and this is Siponimod " I had recently moved my MS care to the L&D from SM, having finally decided, after 13 years, I couldn't cope with their attitude towards me for any longer. There was a delay getting my previous MRI scans from SM for a comparison to be made. My new MS team suit me much better. I am so glad that I moved as they are all really nice and make me feel involved in my care. Their explanations make so much more sense to me . On the other side of the letter the Neurologist writes to the MS nurses. "Dear Colleagues, Miss Powell has a diagnosis of SPMS and, as you know from the MDT meeting on 1st February 2024, she has....and as such is eligible for DMT such as Siponimod......." This was approved at the MDT meeting. I signed the consent form for Siponimod on 29th February 2024.
I am hoping to actually start the Siponimod soon. The delay has been because historically I have a slight abnormality on my ECG. Neurology referred me to Cardiology whose tests were completed on 18th October 2024. The people checking the scans for clarity said "Why are you here? because we can't see anything wrong with your heart". I'm seeing the MS nurse on 14th November to "discuss next steps". I heard Prof G speak last Saturday and I think the next step is a Shingrix Vaccine due to my age of 57. One day I will get there but it has been a very long process.
Professionally I have been present at a variety of MDT meetings in another specialty across 2 London teaching hospitals and observed few of the pro points mentioned happening. It is hugely resource intensive.
If they were to take place for PwMS my view is todiscuss the patients to there is a question with the team about treatment, or conflicting views about treatment, or a complex psychosocial issue relevant to treatment.
Even with that criteria there will be widely differing views.
My care has definitely been discussed at MDT meetings ever since I changed from my local hospital Neurologist to a team at a larger teaching hospital. I started on Nataluzimab as soon as I moved and then changed to Fingolimod. This went to MDT, and more recently had to come off Fingolimod whilst receiving treatment for possible cancer, and now back on. Each time it has been discussed at MDT and the outcome of that meeting communicated to me by my consultant. Gives me confidence in my treatment, knowing that thought has been put into it. My cancer results and treatment were also discussed at MDTs.
Prof G, can you give us an idea of the people who will be at an MDT? Consultants? Team leaders? MS nurses?
At a typical MDT there can be between 12 and 20 people. For a quorum we need at least two neurologists, a neuroradiologist, a pharmacist and the MDT administrator. However, we usually have several neurologists, MS clinical nurse specialists, trainee neurologists, research fellows, medical students and therapists at the MDT. Our MDT also covers our centre (hub) and several referral centres (spokes). Sadly we don't have any patients at the MDT.
Is there a case for discussing new and complicated patients at a general MDT, including distance links to outlying departments, then having smaller team MDT;s for ongoing treatment, referring to the main MDT if required? MDT's certainly are part of best practice.
I have not heard of the MDTs. I have dicused DMTs with anyone as the NICE guidelines say that I am not eligible. Surely, the understanding now is to start PsMS with high efficacy DMTs. That's all I hear from those 'in the know', especially those who are pro-Pharma.
Lest we forget the patient at the heart of this. Surely it should be the highest efficacy DMT that the patient is most comfortable with. Why should everything be determined by MDTs. Is it any wonder the NHS is hemorrhaging money.
Yaaass! Go MDTs. Helps spread best practice, makes sure the dinosaurs are kept in check, gives MSers a better chance at DMT if there's oversight of decisions.
Female, 57, DX Dec 2024. Active RRMS, discussed at DMT to get funding for Ocrevus
I was originally going to be given Siponimod but an mdt review decided I have possibly RRMS not SPMS and have authorised Ocrevus
I actually don’t know, but I suspect it was. Also, the MDT meeting could be presented with an evidence based clinical/ care pathway - the swiftest way to establish agreement and initiation.
I had my first experience a few months ago of my first face to face mdt at the hospital for neurology and neurosurgery in London in the walking clinic. I was hoping to get a dmt to improve my worsening walking and balance, Famprya.
I felt a bit intimidated with 4 people in front of me. What upset me though was their assumption that I had little spasticity. My PPMS has left me with debilitating spasticity and it’s getting worse. I left very upset and disappointed. Although I realise my ocrevus treatment had behind the scenes mdt involvement I still cannot believe how the latest one ended up. It has done more damage than good and im left worse of than I was before it.
Professor G,
I just underwent HSCT (Cytoxan/ATG) as a frontline treatment last month. I am 29 and at an edss of zero despite numerous brain lesions and 1 spinal lesion. Recovery from the procedure itself has been going well so far.
Going forward, what lifestyle adjustments/diets/supplements/off label medications, do you think I should adopt or ask my doctor about? Are there any drugs currently being evaluated that I should keep my eye out for? I am a lifelong athlete so I will continue to exercise regularly ofcourse, just wondering if you had any insight into my situation.
Thanks.
https://gavingiovannoni.substack.com/p/metabolic-health
https://gavingiovannoni.substack.com/p/nutraceuticals-what-is-the-state
I have a letter dated 1st February 2024. On one side the Consultant Neurologist writes to me to say, "We have reviewed today the MRI scan performed in November 2023.....This makes you eligible for DMT for SPMS that shows MS activity and this is Siponimod " I had recently moved my MS care to the L&D from SM, having finally decided, after 13 years, I couldn't cope with their attitude towards me for any longer. There was a delay getting my previous MRI scans from SM for a comparison to be made. My new MS team suit me much better. I am so glad that I moved as they are all really nice and make me feel involved in my care. Their explanations make so much more sense to me . On the other side of the letter the Neurologist writes to the MS nurses. "Dear Colleagues, Miss Powell has a diagnosis of SPMS and, as you know from the MDT meeting on 1st February 2024, she has....and as such is eligible for DMT such as Siponimod......." This was approved at the MDT meeting. I signed the consent form for Siponimod on 29th February 2024.
I am hoping to actually start the Siponimod soon. The delay has been because historically I have a slight abnormality on my ECG. Neurology referred me to Cardiology whose tests were completed on 18th October 2024. The people checking the scans for clarity said "Why are you here? because we can't see anything wrong with your heart". I'm seeing the MS nurse on 14th November to "discuss next steps". I heard Prof G speak last Saturday and I think the next step is a Shingrix Vaccine due to my age of 57. One day I will get there but it has been a very long process.
I haven’t heard about the MDT however, I would have found it very useful and helpful when I was informed I am now Secondary Progressive.
Since I live in the USA I really can’t comment on this, but it seems like a good idea.
I am not aware of ever being discussed at an MDT.
Professionally I have been present at a variety of MDT meetings in another specialty across 2 London teaching hospitals and observed few of the pro points mentioned happening. It is hugely resource intensive.
If they were to take place for PwMS my view is todiscuss the patients to there is a question with the team about treatment, or conflicting views about treatment, or a complex psychosocial issue relevant to treatment.
Even with that criteria there will be widely differing views.
My care has definitely been discussed at MDT meetings ever since I changed from my local hospital Neurologist to a team at a larger teaching hospital. I started on Nataluzimab as soon as I moved and then changed to Fingolimod. This went to MDT, and more recently had to come off Fingolimod whilst receiving treatment for possible cancer, and now back on. Each time it has been discussed at MDT and the outcome of that meeting communicated to me by my consultant. Gives me confidence in my treatment, knowing that thought has been put into it. My cancer results and treatment were also discussed at MDTs.
Prof G, can you give us an idea of the people who will be at an MDT? Consultants? Team leaders? MS nurses?
At a typical MDT there can be between 12 and 20 people. For a quorum we need at least two neurologists, a neuroradiologist, a pharmacist and the MDT administrator. However, we usually have several neurologists, MS clinical nurse specialists, trainee neurologists, research fellows, medical students and therapists at the MDT. Our MDT also covers our centre (hub) and several referral centres (spokes). Sadly we don't have any patients at the MDT.
Thank you.
Is there a case for discussing new and complicated patients at a general MDT, including distance links to outlying departments, then having smaller team MDT;s for ongoing treatment, referring to the main MDT if required? MDT's certainly are part of best practice.
I have not heard of the MDTs. I have dicused DMTs with anyone as the NICE guidelines say that I am not eligible. Surely, the understanding now is to start PsMS with high efficacy DMTs. That's all I hear from those 'in the know', especially those who are pro-Pharma.
Lest we forget the patient at the heart of this. Surely it should be the highest efficacy DMT that the patient is most comfortable with. Why should everything be determined by MDTs. Is it any wonder the NHS is hemorrhaging money.
Just my point of view. Cx