This all sounds great to escalate self-management for those of us living with MS. However, I have found that clinical practitioners are not so interested in those that advocate for themselves. Mention preventative or holistic practices they look the other way and nod politely.
I attended a falls clinic at a MS Therapy Centre in Wendover. It taught me the technique of how to get up after a fall. This has proved to be invaluable. Should be obligatory for people who are frequent faller, not just those wuth MS
Having identified the key missing parts for supporting PwMS (as outlined in your post), I would do an extensive landscape to identify key partners to identify, select and enable those functions effectively.
I believe a lot of the support is already out there and if the NHS could effectively PARTNER with those organisations, I believe this would be a more effective way to get the support needed for PwMS rather than trying to generate it from within.
Eg
Partnering with an organisation like Overcoming Multiple Sclerosis
Partnering with an association of Nutritionalist’s , physiotherapists , mental health experts etc etc
Play to the strengths of the NHS and enable the weaknesses/gaps by forming effective partnerships.
What are the key strengths of the NHS regarding supporting PwMS? From my own experience I’m very clear on the weaknesses but less clear on the strengths. What is the Key strengths that one would build on from an internal perspective and what should be a pure partnership or 3rd party play?
So much of this is true for a lot of neurological disease, indeed most LTC. I think PIFU is a fantastic idea for those of us who can/want this ability to access specialists when we need instead of routine appointments at a time we don’t. That should be rolled out more with HCP trusting that pts will get in touch instead of the slightly paternalistic “I can’t let go. What if they don’t?” approach we have now. This will free up their time for those who need it most. Saying that, my longer neurology appt flagged up more treatment options for the big four you highlight that I didn’t realise were an option than in my GP appts that are short and only about 1 thing that I have identified as being a reason to see them. Proactive vs reactive healthcare right there.
MS Therapy centres could also be utilised to provide the more holistic care you mention because again treat proactively the things that impact day to day life and the reactive admissions or GP visits will fall.
I could go on. This is a topic I’m very passionate about both as a pt but also a HCP. There is so much that could be changed if pt voice was listened to about what they actually want/need and clinicians support with what they know needs to be addressed-in MS, the big four you highlight.
This is the root of the problem. Reactive not proactive. Quite often then MSers have a long uphill struggle to face. For many, obviously understandably, they have lost the umph to keep pushing against the system. Where I am it’s 8 weeks to get a GP appointment. You can see them on the day if it’s urgent, but what is urgent, a part from the obvious. I think B&B probs are, such an impact on daily life, not sure GPs think so. When you get to speak to a GP it’s a different one most times, at times I’ve got through a phone conversation about bladder issues before they’ve realised I have MS. We need consistency of care.
I agree with everything you say. i would add that from my experience medical professionals need to start working together and stop being so silo based. Consultants need to stand up for the patient and stop being afraid of standing on the toes of another consultant. That would save alot of time, energy and money, it would initially ruffle feathers but we need to think beyond reductionist medical systems (specialities) and go back to first principles of the patient being at the centre of care. We need to see the patient as a person and not a condition. I am currently tearing my hair out at a number of consultants that will not join the dots up over UTIs (not MS related) and give the simple and basic care needed. I wish I had a choice in where I go and who I see, rather than this ridged system we have. In Aus I believe there is more choice, which leads to better care, better outcomes and less time wasted.
Yes, just coordinating care, and in some kind of timely manner. Still fighting vertigo waiting for a brain scan. Shouldn’t be this difficult. (It sure wasn’t difficult to schedule a colonoscopy! I do not understand.)
Please talk to Wes Streeting about your ideas, he thinks, as many politicians do, that outsourcing services to the private sector is the answer to fixing the NHS. At best this can only be a short term fix to reduce waiting lists. In my many years experience in business, outsourcing doesn’t work in the long term. What generally happens is they will negotiate a very attractive price to get the business. Then unless they are VERY carefully managed they will drop service levels to make a profit. By which time you realise, you will have lost your upon house expertise and you are stuck with them. Clever strategy eh! It’s the way, school meal provision has become shockingly poor. Let’s face it all the private sector will be interested in cherry picking.are the easy acute things, like hips and knees. Or things where there is a limited lifespan commitment like cancer. An integrated treatment solution for a chronic condition like MS, which is ia lifetime commitment, will have them heading for the hills!
This doesn't explain why healthcare services and outcomes are best in countries that have hybrid systems; Switzerland, Germany, Australia, Nordics, etc. .... Please note that all these countries have universal healthcare. I don't think the NHS should do the outsourcing, but individuals should have the choice to go to the private sector if they want and have incentives to do so, i.e. transportable NHS health insurance scheme.
Another model is Israel; every resident of Israel is insured for healthcare under the National Health Insurance Law.
The devil is in the detail of any hybrid system arrangements. My question would be How do the systems in these countries cover chronic conditions? You need to go into contract negotiations with the mind set that the private sector are coming to this from the point of view if making a profit, not as a public service for the common good. Also there needs to be a level of well resourced governance and control to manage them to deliver a service that is both fit for purpose and cost effective.
Very well. The state still covers the costs of chronic treatment only it is topped up by private insurance. In Germany there are different tiers of insurance which companies or individuals pay for. In Australia, for example, it works out cheaper to provide national health this way because of the gains in efficiency.
Prof G, is there any payment for the basic insurance in those systems? (Canada too?) I have always assumed there was none to nominal. Perhaps I’m wrong…(wouldn’t be the first time…)
It's paid by taxes. But places like Canada you still have to pay for prescription medication Out of pocket. Several countries with national health care still require a minimal payment, Such as places like Israel where you have to pay a separate tax for Public health care. But many countries also have national health care completely free.
Thought I left a post and it disappeared…Thank you for your wide ranging knowledge and research, Christopher. I wondered about this. I’ve been limiting screen time to activity I care about due to vertigo. This subject touched a nerve. (Pun intended..) My father died in 2001, and one can’t compare Medicare then with today. Now there are penalties if you haven’t been covered by previous insurance when you are required to sign up! My jaw dropped. Hello privatization. (My guess is you know all this!) I suspect in those countries where one must pay for drugs, it likely isn’t the financial free for all break your bank account we experience. ? My best to you!
PJ’s - You are absolutely on the mark. You are describing the US. Our only “public health care” is Medicare for over 65 and the disabled, and the traditional program is becoming increasingly costly and privatized. (We have a totally privatized Medicare program (Advantage) which most doctors do not accept.) Doctors presently can opt out of traditional Medicare, leaving patients stranded, and Medicare is quite sanguine about this! With respect to private coverage, as an insurance lawyer, I believe people have no idea, if they ever did, what “risk pooling” is. That concept was jettisoned for cherry picking healthy patients a long while ago. Since one is not insured here until Medicare at 65 or disabled, and private only through job coverage or extraordinary wealth, insurance is illusory, unaffordable, or insufficient. So people do chance it and go without. (There are state programs and low income. One must be destitute.) Question: I read Blair will be involved in the privatization of the NHS. Is that true? If so, it is not auspicious, imo (Didn’t mean to be so wordy, but your comment is exactly how I view it.) Good wishes!
Hello Italien- I want to sue Allstate for auto insurance abuse in PA. Long story; let me know if you want to hear about it in another forum, or know someone looking for a class-action. :-)
There are different types of insurance attorneys. A medical insurance attorney would be different than an auto insurance attorney which would also be different than a home insurance attorney.
Tom, I’d be interested to hear about it, of course. What’s happens to one can happen to any of us! As far as how to go about action, Christopher is right. Your state laws will govern what you can do. I dealt with personal injuries, facilities, etc. But let me know if you’d like.
Hi Italien, thanks for feedback. Please see comment to Mr. Torri and my email address. Again, this is an MS website and I don't want to start trouble here :-).
I work at a law firm (or I should say "worked," as I have been on extended LOA for the past seven years), and I will ask if any of the attorneys know or can recommend an attorney or a firm in Philadelphia dealing with auto insurance companies. I can't be sure they will know anyone as we are a corporate and IP firm, but I will try.
Thanks- I would say it's some kind of common law Tort situation that doesn't fit Insurance "Bad Faith" or Consumer Protection because I'm a 3rd party and did not purchase anything (dealing with someone else's insurance), therefore I am not protected by those laws. (Allstate knows it) Class action as i can see this happening with others. But this is an MS web site and I don't want to push it. Tom234a@windstream.net. It's a situation that pushes the boundaries and begs for an attorney who'd enjoy taking down a Goliath and is not afraid of adventure.
Talk about Me. Zoom works. IT can help. Develop a useful (as opposed to useless) tool for MS patients stuck on the couch to be honest about their subjective and objective functioning and Mood.
Doctors: Did You ever look at the computer first, after the Hello?
Did You start shaking hands again after Covid? Look the patient in the eye First thing?
Did the patient say,”I’m fine?”
With So many MS Disease monitoring medications. What does the Brain Trust think?
You know how I feel about Gadolinium.
Prove to Me it’s Safe. Now, or Preferably Yesterday.
Your idea for a multiple sclerosis QAF is an awesome idea! So is focusing on implementing Epstein Barr virus vaccines as soon as they become available, ubiquitously.
It seems that a hybrid system would be the best way to go for most of the Western world. I like very much what you have put together Professor G, and I don't think there's too much more that you have missed. Justin Trudeau made a good point on this subject when he was talking about national health care for Canada: He explained that the system there isn't perfect and they are still learning, but that they are open to that learning and improving on the system that they have. There are always going to be people unhappy with a system, but those are the people whose voices should be raised up the most to help with improving on what there is already in place. Otherwise it's just preaching to the choir. And just like in science--biology in particular... in any system there can be no growth without (some) stress on the system.
Places like Singapore have very good nationalized healthcare which support very long lives and very good infant mortality rates, but unfortunately the system there would be extremely difficult implementing anywhere else in the world. Especially in places where capitalism would fight hard against government trying to regulate prices more than it already does. And in countries where the king is only a de facto figurehead rather than a ruler.
I think to prevent falls give us good regular neuro physio. Beyond “ sit to stands “I was part of a 6 week exercise trial recently. It was really enjoyable. My walking definitely improved. Until I got Covid and then I had to be prepared to start again. What I’d gained and slipped away with Covid.
I found a private neuro physio clinic with gym sessions. Everything is in 2 minute segments but my heart rate raises and I feel stronger again. This costs me £15 a session. My family buy me sessions for birthdays etc and I go out less for coffee etc to pay for it. So it takes discipline and choices. Really, the NHS ought to provide us with this sort of preventive care, even if we have to pay towards it.
I think not enough interest in helping with hand problems. I’m getting no where with my hand issues with the NHS. After being sent for nerve conduction for a trapped nerve, ( I knew it wasn’t that) it was not followed up. I have muscle wasting in my hand muscle and weakness with my arm in an odd resting position. So I’ve taken up learning the Piano. Plus paying for a private physiotherapist to get her opinion. I do not know the answers to your questions. I’ve more or less given up with expecting anything from the NHS other than medications that often create further problems.
I hear you, see you. I can’t even find a physiotherapist here in the states that won’t kill an MS patient! But really, no matter where we are, these treatments should be available and provided. Lovely about the piano!! :)
So frustrating when you’re trying hard but little to no support. The Piano is interesting. I’m left handed, that’s my problem hand. So I’ve become right handed too. The teacher was shocked when she realised I’m really a leftie. We’re working on a way to not use my weakest fingers. They flutter like a butterfly. 🎹.
This is a very thought provoking article that should be read by a health minister, no doubt they have too much to do. It’s clear that the EBV vaccine could reduce MS care costs for the NHS and I suppose that’s the only language they might actually hear. As regards brain health, would an app support this in any way to educate and point to resources? Thanks for everything you do to support and drive forward MS care.
Re: "As regards brain health, would an app support this in any way to educate and point to resources? "
An app is only one part of this. It needs to be embedded in our education system at all levels and it needs a public health campaign, etc. Getting this to be adopted by the NHS and UK would take a massive effort.
Just a note, I don’t mean to be dark, but this appears similar to the states’ situation, which is in a word, awful. Once allied services are privatized and/or outsourced to “save money,” coordination of care fails and becomes impossible. Our medical industry (industrial complex) here in the main is making a bloody fortune while many of us with chronic conditions are struggling on our own. There is decline in medical school applicants and increasing doctor burnout. (I get weary of hearing “go to urgent care, ER/ED, etc. No one answers phones, sets up tests, etc) Prof G, I trust you and your colleagues have the clout to prove that the maintenance of our disease is both compassionate and cost effective and you can get the NHS to reject where this is headed. We know you have the drive and passion. Keep on! You don’t want to be like us. Good wishes to all!
I agree. The labour Government are currently conducting a review into the curriculum to decide if it is fit for purpose. Just an idea, but this might be a time when additions such as this could be added to a pshe curriculum.
This sounds like a well thought out proposal for the long term management of MS. However it needs to be circulated at the highest level of ministerial and NHS management. Has that been done?
No I have only just penned it. Each section would need more flesh with data. I also don't have access to politicians. I would have difficult getting this to them.
Try to access them, you’d be amazed. Find their email address and talk to them, or talk to your local MP and get them to escalate it, be inventive, please don’t give up.
This all sounds great to escalate self-management for those of us living with MS. However, I have found that clinical practitioners are not so interested in those that advocate for themselves. Mention preventative or holistic practices they look the other way and nod politely.
Re: "Mention preventative or holistic practices they look the. other way and nod politely."
This is part of the problem. We need to create carrots and sticks to engage HCPs with a new way of delivering health.
So true.
I attended a falls clinic at a MS Therapy Centre in Wendover. It taught me the technique of how to get up after a fall. This has proved to be invaluable. Should be obligatory for people who are frequent faller, not just those wuth MS
Partnerships.
Having identified the key missing parts for supporting PwMS (as outlined in your post), I would do an extensive landscape to identify key partners to identify, select and enable those functions effectively.
I believe a lot of the support is already out there and if the NHS could effectively PARTNER with those organisations, I believe this would be a more effective way to get the support needed for PwMS rather than trying to generate it from within.
Eg
Partnering with an organisation like Overcoming Multiple Sclerosis
Partnering with an association of Nutritionalist’s , physiotherapists , mental health experts etc etc
Play to the strengths of the NHS and enable the weaknesses/gaps by forming effective partnerships.
What are the key strengths of the NHS regarding supporting PwMS? From my own experience I’m very clear on the weaknesses but less clear on the strengths. What is the Key strengths that one would build on from an internal perspective and what should be a pure partnership or 3rd party play?
Help the MS Therapy centres by giving them more funding so they can provide more treatment. They are centre of excellence.
So much of this is true for a lot of neurological disease, indeed most LTC. I think PIFU is a fantastic idea for those of us who can/want this ability to access specialists when we need instead of routine appointments at a time we don’t. That should be rolled out more with HCP trusting that pts will get in touch instead of the slightly paternalistic “I can’t let go. What if they don’t?” approach we have now. This will free up their time for those who need it most. Saying that, my longer neurology appt flagged up more treatment options for the big four you highlight that I didn’t realise were an option than in my GP appts that are short and only about 1 thing that I have identified as being a reason to see them. Proactive vs reactive healthcare right there.
MS Therapy centres could also be utilised to provide the more holistic care you mention because again treat proactively the things that impact day to day life and the reactive admissions or GP visits will fall.
I could go on. This is a topic I’m very passionate about both as a pt but also a HCP. There is so much that could be changed if pt voice was listened to about what they actually want/need and clinicians support with what they know needs to be addressed-in MS, the big four you highlight.
This is the root of the problem. Reactive not proactive. Quite often then MSers have a long uphill struggle to face. For many, obviously understandably, they have lost the umph to keep pushing against the system. Where I am it’s 8 weeks to get a GP appointment. You can see them on the day if it’s urgent, but what is urgent, a part from the obvious. I think B&B probs are, such an impact on daily life, not sure GPs think so. When you get to speak to a GP it’s a different one most times, at times I’ve got through a phone conversation about bladder issues before they’ve realised I have MS. We need consistency of care.
I agree with everything you say. i would add that from my experience medical professionals need to start working together and stop being so silo based. Consultants need to stand up for the patient and stop being afraid of standing on the toes of another consultant. That would save alot of time, energy and money, it would initially ruffle feathers but we need to think beyond reductionist medical systems (specialities) and go back to first principles of the patient being at the centre of care. We need to see the patient as a person and not a condition. I am currently tearing my hair out at a number of consultants that will not join the dots up over UTIs (not MS related) and give the simple and basic care needed. I wish I had a choice in where I go and who I see, rather than this ridged system we have. In Aus I believe there is more choice, which leads to better care, better outcomes and less time wasted.
Yes, just coordinating care, and in some kind of timely manner. Still fighting vertigo waiting for a brain scan. Shouldn’t be this difficult. (It sure wasn’t difficult to schedule a colonoscopy! I do not understand.)
Please talk to Wes Streeting about your ideas, he thinks, as many politicians do, that outsourcing services to the private sector is the answer to fixing the NHS. At best this can only be a short term fix to reduce waiting lists. In my many years experience in business, outsourcing doesn’t work in the long term. What generally happens is they will negotiate a very attractive price to get the business. Then unless they are VERY carefully managed they will drop service levels to make a profit. By which time you realise, you will have lost your upon house expertise and you are stuck with them. Clever strategy eh! It’s the way, school meal provision has become shockingly poor. Let’s face it all the private sector will be interested in cherry picking.are the easy acute things, like hips and knees. Or things where there is a limited lifespan commitment like cancer. An integrated treatment solution for a chronic condition like MS, which is ia lifetime commitment, will have them heading for the hills!
This doesn't explain why healthcare services and outcomes are best in countries that have hybrid systems; Switzerland, Germany, Australia, Nordics, etc. .... Please note that all these countries have universal healthcare. I don't think the NHS should do the outsourcing, but individuals should have the choice to go to the private sector if they want and have incentives to do so, i.e. transportable NHS health insurance scheme.
Another model is Israel; every resident of Israel is insured for healthcare under the National Health Insurance Law.
https://en.wikipedia.org/wiki/Healthcare_in_Israel
The devil is in the detail of any hybrid system arrangements. My question would be How do the systems in these countries cover chronic conditions? You need to go into contract negotiations with the mind set that the private sector are coming to this from the point of view if making a profit, not as a public service for the common good. Also there needs to be a level of well resourced governance and control to manage them to deliver a service that is both fit for purpose and cost effective.
Very well. The state still covers the costs of chronic treatment only it is topped up by private insurance. In Germany there are different tiers of insurance which companies or individuals pay for. In Australia, for example, it works out cheaper to provide national health this way because of the gains in efficiency.
Prof G, is there any payment for the basic insurance in those systems? (Canada too?) I have always assumed there was none to nominal. Perhaps I’m wrong…(wouldn’t be the first time…)
It's paid by taxes. But places like Canada you still have to pay for prescription medication Out of pocket. Several countries with national health care still require a minimal payment, Such as places like Israel where you have to pay a separate tax for Public health care. But many countries also have national health care completely free.
Thought I left a post and it disappeared…Thank you for your wide ranging knowledge and research, Christopher. I wondered about this. I’ve been limiting screen time to activity I care about due to vertigo. This subject touched a nerve. (Pun intended..) My father died in 2001, and one can’t compare Medicare then with today. Now there are penalties if you haven’t been covered by previous insurance when you are required to sign up! My jaw dropped. Hello privatization. (My guess is you know all this!) I suspect in those countries where one must pay for drugs, it likely isn’t the financial free for all break your bank account we experience. ? My best to you!
PJ’s - You are absolutely on the mark. You are describing the US. Our only “public health care” is Medicare for over 65 and the disabled, and the traditional program is becoming increasingly costly and privatized. (We have a totally privatized Medicare program (Advantage) which most doctors do not accept.) Doctors presently can opt out of traditional Medicare, leaving patients stranded, and Medicare is quite sanguine about this! With respect to private coverage, as an insurance lawyer, I believe people have no idea, if they ever did, what “risk pooling” is. That concept was jettisoned for cherry picking healthy patients a long while ago. Since one is not insured here until Medicare at 65 or disabled, and private only through job coverage or extraordinary wealth, insurance is illusory, unaffordable, or insufficient. So people do chance it and go without. (There are state programs and low income. One must be destitute.) Question: I read Blair will be involved in the privatization of the NHS. Is that true? If so, it is not auspicious, imo (Didn’t mean to be so wordy, but your comment is exactly how I view it.) Good wishes!
Hello Italien- I want to sue Allstate for auto insurance abuse in PA. Long story; let me know if you want to hear about it in another forum, or know someone looking for a class-action. :-)
There are different types of insurance attorneys. A medical insurance attorney would be different than an auto insurance attorney which would also be different than a home insurance attorney.
Tom, I’d be interested to hear about it, of course. What’s happens to one can happen to any of us! As far as how to go about action, Christopher is right. Your state laws will govern what you can do. I dealt with personal injuries, facilities, etc. But let me know if you’d like.
Hi Italien, thanks for feedback. Please see comment to Mr. Torri and my email address. Again, this is an MS website and I don't want to start trouble here :-).
Yes, thanks. He didn't specify. Have to give it a shot. (desperate)
I work at a law firm (or I should say "worked," as I have been on extended LOA for the past seven years), and I will ask if any of the attorneys know or can recommend an attorney or a firm in Philadelphia dealing with auto insurance companies. I can't be sure they will know anyone as we are a corporate and IP firm, but I will try.
Thanks- I would say it's some kind of common law Tort situation that doesn't fit Insurance "Bad Faith" or Consumer Protection because I'm a 3rd party and did not purchase anything (dealing with someone else's insurance), therefore I am not protected by those laws. (Allstate knows it) Class action as i can see this happening with others. But this is an MS web site and I don't want to push it. Tom234a@windstream.net. It's a situation that pushes the boundaries and begs for an attorney who'd enjoy taking down a Goliath and is not afraid of adventure.
I am an American Retired Early and I Qualified for Social Security Disability and Work Disability Benefits from nursing jobs.
I have a fantasy that my 8-10 or more specialists sat around a table and discussed Me. 2 Neurological Docs: MS & Seizure Specialists,
2 Cardiologists: Pacemaker Monitoring and Monitoring. Dermatologist, Primary Care, Colonoscopy Specialist for high risk.
Radiologist: MRI, Mammograms, arthritis monitoring prn. Physical Therapy, CPAP Monitoring.
Talk about Me. Zoom works. IT can help. Develop a useful (as opposed to useless) tool for MS patients stuck on the couch to be honest about their subjective and objective functioning and Mood.
Doctors: Did You ever look at the computer first, after the Hello?
Did You start shaking hands again after Covid? Look the patient in the eye First thing?
Did the patient say,”I’m fine?”
With So many MS Disease monitoring medications. What does the Brain Trust think?
You know how I feel about Gadolinium.
Prove to Me it’s Safe. Now, or Preferably Yesterday.
Your idea for a multiple sclerosis QAF is an awesome idea! So is focusing on implementing Epstein Barr virus vaccines as soon as they become available, ubiquitously.
It seems that a hybrid system would be the best way to go for most of the Western world. I like very much what you have put together Professor G, and I don't think there's too much more that you have missed. Justin Trudeau made a good point on this subject when he was talking about national health care for Canada: He explained that the system there isn't perfect and they are still learning, but that they are open to that learning and improving on the system that they have. There are always going to be people unhappy with a system, but those are the people whose voices should be raised up the most to help with improving on what there is already in place. Otherwise it's just preaching to the choir. And just like in science--biology in particular... in any system there can be no growth without (some) stress on the system.
Places like Singapore have very good nationalized healthcare which support very long lives and very good infant mortality rates, but unfortunately the system there would be extremely difficult implementing anywhere else in the world. Especially in places where capitalism would fight hard against government trying to regulate prices more than it already does. And in countries where the king is only a de facto figurehead rather than a ruler.
I think to prevent falls give us good regular neuro physio. Beyond “ sit to stands “I was part of a 6 week exercise trial recently. It was really enjoyable. My walking definitely improved. Until I got Covid and then I had to be prepared to start again. What I’d gained and slipped away with Covid.
I found a private neuro physio clinic with gym sessions. Everything is in 2 minute segments but my heart rate raises and I feel stronger again. This costs me £15 a session. My family buy me sessions for birthdays etc and I go out less for coffee etc to pay for it. So it takes discipline and choices. Really, the NHS ought to provide us with this sort of preventive care, even if we have to pay towards it.
I think not enough interest in helping with hand problems. I’m getting no where with my hand issues with the NHS. After being sent for nerve conduction for a trapped nerve, ( I knew it wasn’t that) it was not followed up. I have muscle wasting in my hand muscle and weakness with my arm in an odd resting position. So I’ve taken up learning the Piano. Plus paying for a private physiotherapist to get her opinion. I do not know the answers to your questions. I’ve more or less given up with expecting anything from the NHS other than medications that often create further problems.
I hear you, see you. I can’t even find a physiotherapist here in the states that won’t kill an MS patient! But really, no matter where we are, these treatments should be available and provided. Lovely about the piano!! :)
So frustrating when you’re trying hard but little to no support. The Piano is interesting. I’m left handed, that’s my problem hand. So I’ve become right handed too. The teacher was shocked when she realised I’m really a leftie. We’re working on a way to not use my weakest fingers. They flutter like a butterfly. 🎹.
I keep losing posts from tremor! Head slap! It sounds like you have a terrific teacher.. I applaud your dedication and effort! 👏🏼👏🏼
This is a very thought provoking article that should be read by a health minister, no doubt they have too much to do. It’s clear that the EBV vaccine could reduce MS care costs for the NHS and I suppose that’s the only language they might actually hear. As regards brain health, would an app support this in any way to educate and point to resources? Thanks for everything you do to support and drive forward MS care.
Re: "As regards brain health, would an app support this in any way to educate and point to resources? "
An app is only one part of this. It needs to be embedded in our education system at all levels and it needs a public health campaign, etc. Getting this to be adopted by the NHS and UK would take a massive effort.
🙃🙃🙃🤗🤗🤗😘😘😘😍😍😍🥰🥰🥰
Just a note, I don’t mean to be dark, but this appears similar to the states’ situation, which is in a word, awful. Once allied services are privatized and/or outsourced to “save money,” coordination of care fails and becomes impossible. Our medical industry (industrial complex) here in the main is making a bloody fortune while many of us with chronic conditions are struggling on our own. There is decline in medical school applicants and increasing doctor burnout. (I get weary of hearing “go to urgent care, ER/ED, etc. No one answers phones, sets up tests, etc) Prof G, I trust you and your colleagues have the clout to prove that the maintenance of our disease is both compassionate and cost effective and you can get the NHS to reject where this is headed. We know you have the drive and passion. Keep on! You don’t want to be like us. Good wishes to all!
I agree. The labour Government are currently conducting a review into the curriculum to decide if it is fit for purpose. Just an idea, but this might be a time when additions such as this could be added to a pshe curriculum.
I sent Wes Streeting's office a link to the newsletter. However, I am not expecting a reply.
This sounds like a well thought out proposal for the long term management of MS. However it needs to be circulated at the highest level of ministerial and NHS management. Has that been done?
No I have only just penned it. Each section would need more flesh with data. I also don't have access to politicians. I would have difficult getting this to them.
Try to access them, you’d be amazed. Find their email address and talk to them, or talk to your local MP and get them to escalate it, be inventive, please don’t give up.
I sent Wes Streeting's office a link to the newsletter. However, I am not expecting a reply.