31 Comments
Feb 15, 2023Liked by Gavin Giovannoni

Great post Prof G, I find MS Selfie a useful resource to understand living with my own MS.

I also get support from my MS service locally in NHS Forth Valley and from the MS Trust and MS Society and from Neurocentral.

I'm at a stage with my own MS and my growing understanding of what I'm dealing with that I'm relatively comfortable arranging my own appointments. I've had years of practice with my own MS now.

Keep up your good work Prof G it's appreciated.

Karen

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Feb 15, 2023Liked by Gavin Giovannoni

I think you’re correct in your assumption that ms selfie subscribers are more likely to agree to this as I absolutely do. I’d like to be consulted on how I want my care to be implemented and if I’m ever asked, my answer will be to ask for the chance to self assess in writing where I’d be happy for them to decide if I need an appointment or the other way round.

The ability to communicate desperately needs improving and dragging out of this archaic box ticking system consisting of; for example - randomised calls from my nurse but only during working hours, I’m full time and don’t know I need to be available. To call back means leaving an answerphone message, and so the game begins where we repeatedly miss each other.

Also, if patient’s have less appointments offered, it might mean experienced pwms can help push localised group meetings to include a more accessible time of day ie. outside of std working hours so everybody can attend if they need to, 11am on a Tuesday is no good for me. It could help alleviate loneliness for some but allow people to feel useful too as I’m unsure if the experienced pwms realise how invaluable they are to us newcomers.

Just my thoughts though.

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Feb 15, 2023Liked by Gavin Giovannoni

Brilliant Gavin,

This is why I love your opinions , You say things so clearly

Keep em coming!

Another thank you

John from JEMS

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Feb 15, 2023Liked by Gavin Giovannoni

How do I contact my MS team? They are the most elusive of human beings I have ever encountered. I email, I get a raft of out of office notifications, I phone, it goes through to voicemail, which then cuts the call because the voicemail box is full. My neurologist writes me a letter which takes six weeks to reach me (using modern day communication techniques like email would improve the situation, attach the letter and send it, two minutes at the most. The world has had email for 30 years now). I text, it take three days for anyone to get back to me. I haven't seen my neurologist, face to face, for over three years.

It would be useful if there was a basic standard of care across the country, that MSers could expect and that's not in place. Not everyone gets a regular MRI, not everyone gets put on a DMT, not everyone has a neurologist that keeps up to date with new information. I have never, in my normal check up with my MS team, been put through the MS Olympics (I know what they are because I've been on a clinical trial where I put through all the tests on a regular basis). No use asking my GP to take part, I have to contact them through their eConsult system and if I'm lucky enough to get to see someone in person, I never see the same person twice.

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Feb 15, 2023Liked by Gavin Giovannoni

The best way to reduce NHS pressure as a result of MS would be to make GPs a key part of our team again and bring MS expertise back into GP surgeries.

As someone with several significant medical conditions (something that is going to get more common as DMTs mean an aging MS population) I find myself on a never ending merry go round (that is far from 'merry') of trying to get someone to diagnose and treat whatever new health concern I have.

Everyone wants to rule out MS first and the question "What does your neurologist say?" haunts my dreams because my neurologist says nothing, the only contact is half an hour on the phone every 18 months if I'm lucky.

So my care devolves to me going backwards and forwards carrying messages between my MS Nurse and my GP and trying to get someone to take responsibility for me. Neither has the skillset to determine what's happening and communication between them is time consuming for both and limited in scope. Meanwhile treatment for whatever it is is delayed by months or years.

Many years ago, my sister wMS used to see her GP first, and foremost who was very knowledgeable about MS, and who contacted the Neuro when necessary.

My situation s a clear example of the law of unintended consequences based on an assumption that patients who have MS only have MS. In my experience the MS Nurse system creates more appointments and worsens care because it builds in delays, unreal expectations and anxiety.

Oh and no one has ever done a peg test with me, not do I get an annual physical Neuro exam. Shouldn't Nurses at least be trained to do that? Might be more useful than the patronizing chat.

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Feb 15, 2023Liked by Gavin Giovannoni

I have primary progressive MS. To be honest i dont see the point in my really even seeing the neurologist who are so over pressed right now with new patients. I am 71 years old. what is the point? I spoke to my MS nurse 2 weeks ago it works well. she rings me every 6 months. if i have an issue i tell her.

Maybe we should have a mentoring scheme within MSERS. The graduates who have had it years and still survving mentor the newer ones who are full of anxiety and think they will be in wheelchairs after only a few months after diagnsosis. I have actually kind of mentored a lady with MS we have been chatting for 3 years when i first met her she was ready to quit, now much more positive, keeps moving forward and is enjoying her life, and doesnt need the crutch of her neuro.(again he cant really do much for her anyway).

PIFU sounds like a hair dryer lol. Or is that PIFCO...same thing more hot air blowing around. But EDUCATION is the key to many things. Why do i need to drag my sorry backside to the hospital for an appointment with my lovely neurolgoist just to chat about our anniversary (16 years together), he cant do anything for me, we both know that. Yeh he can chuck new drugs at me, like recently HE let me try Sativex vile smelly and tasting stuff which just made me feel sick and dizzy. (No thanks).

Nah i would rather he spent his time working with new patients then myself. like i said he cant help me so why bother him. I am resigned now with my MS, scale is about 8 on the old chart but determined to keep moving forward. JUST ASK THE PATIENTS WHAT THEY WANT. Yeh its nice to know i can contact my MS nurse more of that i think would be the best way to go.

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Feb 17, 2023Liked by Gavin Giovannoni

Hi Prof G,

I think there is a big danger of implementing PIFUs. Right now in the UK, patients have a once a year neurology appointment which is on par or a bit less than other countries which range from once a year to once every 6 months. Usage of MS nurses is great, but it is also not a replacement for a neurologist. If the UK wants to save money, then they are hoping for people to see a neurologist less than once a year which is unconscionable. Once a year is a bare minimum for such a complex disease. Patients often ignore relapses, or are unable to tell the difference between a pseudo relapse and a real relapse. I'd imagine many patients will either request more follow-up or less follow-up. Those that need more follow-up for active disease and frequent relapses should of course be given that, but this doesn't seem to be the point of PIFUs. I'd imagine this policy will have implications based on socio-economic and educational factors rather than on health and disease severity factors. In short, MSers need at least once a year a check-in. If the PIFUs are hoping for less, then we will have lower quality of care. If they are allowing for once a year or more, then it isn't helping the NHS crisis, so I doubt that's the goal of this proposal. I think some centres offer Q&A sessions for MSers which may help and also could go virtual to help intermediate care between neurology visits.

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Feb 15, 2023Liked by Gavin Giovannoni

This is a difficult one, and I'm not immediately convinced that PIFUs would result in a 'productive' use of clinicians' time. But I guess these things have to be considered. I reckon (without much info to back me up) that in about 10 years' time AI will have reached a level of sophistication where something like a robot GP could do a very good job, in concert with human doctors. But these kind of programs remain very primitive, and the UX today would make the ill just a little more sick.

Speaking personally, living inside a slow disease process, I feel very reassured that (sometimes) the same team checks in on me on an annual basis, as it is more than possible they will be able to identify changes I haven't clocked.

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Feb 15, 2023Liked by Gavin Giovannoni

I would like to thank you. As a result of this website, which fostered confidence in us to ask for the highest efficacy DMT possible last week, we have now managed to get our child reassessed and she is now going to have her treatment scaled up. This would not have happened had we not read your work. We are in the ‘well-educated, knowledgeable, and empowered to self-manage their MS‘ category, what happens to those that are not? Keep going, ignore any critics.

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Feb 15, 2023Liked by Gavin Giovannoni

Is this kind of language REALLY necessary - I don't give a F... - but many people will and would find this quite insulting.

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Feb 15, 2023Liked by Gavin Giovannoni

Please, please find a way to create MS-Connect. It's an idea that has found it's time.

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As a retired NHS psychiatrist looking after people with chronic major mental illness where resources were very stretched I remember some colleagues being shocked at my tendency to suggest to my patients and their families that they phone for an appointment if there was a problem before their next appointment with me. I think my peers felt I was not "training" my patients properly. Unfortunately I did not formally assess the effectiveness of this approach but I felt that people tended not to misuse this offer and that in fact there was perhaps a paradoxical effect of the patients were less demanding because they knew they could see me if they need to. They were certainly more satisfied with the arrangement.

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Thanks, very interesting. I manage my own care and right now can keep up and take myself to the necessary appointments. I do feel it will be a burden to to as my disability progresses.

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