What is needed from the MS profession is the acknowledgement that the current system is broken. We need new ways to address the perfect storm. Do you agree?
I totally agree the system is broken. When it works it’s great. Ive been very impressed by the monitoring of starting on Mayzent but very unimpressed at the fact that I keep ringing and emailing various people for help with spasticity and pain but nobody gets back to me. I think its appalling not to be helped quickly with this. Living with chronic low/medium level pain is exhausting . So to be honest I feel as if I am self managing , read lots, exercise, diet etc..but there are times when you need access to a professional . I hate having to make a nuisance of myself in order to be heard.
I know how that feels and all I can do is put my head down and carry on trying. Its bad when Pain Dr's tell me that I have tried all their meds they use and Ketamine is the only other option to manage pain. Coming from Africa I will always choose nature over pharma. I wonder if the number of MS nurses can be increased and they can become prescribing practitioners to help consultants.
I am someone who is as well as I am thanks to Bart’s MS Blog/Aaron Boster/MS News Today and most recently your Selfie site.
Access to these sites led to my successfully achieving treatment with Alem, as someone who was treatment naive at the time. It’s the reason for so many things: from my continuing to exercise, to swallowing things like D-Mannose and Lipoic Acid, and doing activities to benefit brain health.
It was my sister, already living with another autoimmune system, who advised me to insist on copies of every test and scan result.
Added to which, I’ve had the advantage, lacking for so many people with MS, of being able to afford resources such as gym membership and access to a neuro physiotherapist.
Nothing of what has been of benefit in regards to self management has come from charity sites or from the clinicians I’ve had contact with.
The best I’ve had from the clinical input has been the agreement to provide treatment with Alem - for which I shall always be eternally grateful.
I suspect, if my experience is anything to go by, that self care is happening by the back door, so-to-speak.
Since being given back to the local centre, I’ve realised services are badly overstretched locally, so that I fully appreciate why I’ve not been seen in person by a neuro since 2019 and why the provision from the MS nurse is a phone call once every six months (and I’ve never met her!)
Without the access to all those sites and provisions I’ve referenced there is a likelihood I would have seen evidence of PIRA. In fact, I was seeing more evidence of foot drop last year and it was utilising the eversion exercise provided by the neuro physio that has resolved this problem, at least for now.
Personally I’d like to see far, far more focus on guiding patients in self care and fully endorse the steps required, as evidenced in your parallel with Type One.
But I am also conscious of the fact that self-care requires that individuals are not only educated and enabled in this, but that they as people have and can maintain the motivation to sustain all relevant measures, and have the strength to assert themselves when they are either slipping into being wide of the mark in what’s in their best interests; also strong enough to press the NHS contacts when they have the need of direct medical care, or input.
Another issue is the ‘don’t wanna know/head in the sand’ mentality that is totally understandable when diagnosed with a chronic disease that is degenerative, for which there is no cure.
This will, of course, always undermine the capacity for self care to apply to everyone with MS. Let’s face it, those of us who access this site, are most probably those motivated to be as knowledgeable and proactive as possible!
This presents one, of I’m sure, lots of arguments for continued monitoring by clinicians and is something that would need to be allowed for in the pursuit of a self-care model of practice.
I’d like to wish you all the very best in trying to drive this forward, because the the NHS needs it and PwMS will, by-and-large, be far better off for it!
I was essentially left to self-manage - at diagnosis my neurologist told me to come back when I couldn't live with it anymore. 10 years went by during which I had no relapses or no major symptoms which made me 'go back' to seek further help. Eventually had an MRi 11 years after diagnosis which showed a massive brain and spinal load of lesions which are now causing me to progress quite quickly. While I do agree that we have to self-manage and don't have an answer for the strain the NHS is under, I cannot help thinking that if I had been managed correctly at the start I wouldn't be in this position now.
While I may sound ancient ( 62 yrs old) As I have said previously my Neurologist and M.S.nurse are extremely difficult to pin down for questions and answers . They are concentrating on new younger patients to take part in trials etcetera. As I have said previously I have two daughters and am all for this but beginning to feel like a forgotten generation. I personally have never been offered to take part in any trials ( been promised but never came to fruition) . So would be happy to have more say in my personal health and where I do agree some G.P.s are overworked there are many in my experience who are not!!
Beverley, you are not ancient. (I am!) But you’re absolutely correct. One gets to a certain age and neurologists here in the states become rather uninterested in treatment, even though they could do a better job of of symptom management. As I’ve said on here previously, I’ve been offered Mayzent or nothing. And I’m too old. Best to you. I get it.
I agree that more consideration and attention needs to be given to people who are older as well as the same for the younger generations living with MS.
I’m 58 and was diagnosed age 51. I subsequently learned that ‘late onset’ MS where women age 50-64 are diagnosed has more than doubled.
I was fortunate to see a neurologist who didn’t see my age as a barrier to treatment with Alem. However a lot of neuros are clearly anxious about treating older patients or see it as an unnecessary waste.
This is very shortsighted, ignoring the role many more mature women have in our society:
A lot of my friends are now providing childcare for their grandchildren or homes to their adult children struggling with the cost of living or divorce.
MS self-management may be possible for readers of this blog but this is the minority. I attended a mindfulness course run by the MS Trust recently and i was shocked at how uninformed some of the patients were despite having MS for 10+ years. You may have covered it previously but any theories on why the prevalence of MS is increasing or is this just because of better diagnostic tools? smoking for instance, one of the significant risk factors has rapidly reduced
This is why every person with MS need to go on a course to teach them about MS and give them the self-management skills and knowledge to navigate the NHS or their own healthcare systems.
Not to make light or insult, but self management skills and knowledge are tough obstacles for (I'll say) one half of the crowd. That's why (in my opinion) you see so much discounting of science professionals and the like all over the place, backed by denigration of same by smarter others who stand to gain from their opinions being listened to by misguided discounters. Sounds paranoid...
Not sure why the incidence is increasing, but it may be due to increasing vitamin D deficiency, childhood obesity, changes in our diet and microbiome and later EBV infection.
I wonder about this also. I was not born in a cold climate, for which I was dismissed by several neurologists from the beginning. However, my immigrant father had seen two small siblings die. I had Thallessimia B at a very young age, and I literally wasn’t allowed out of the house. He was terror stricken. I’m sure I had zero Vitamin D!!! (Not funny.)
The system is broken. I am pretty much trying to self manage my MS and this site helps to keep me informed for which many thanks Prof G!
The MS service where I live is non existent. I am on DMF but was told by my neuro last year we would meet again in 2 years! Last MRI was about 5 years ago and I had to specifically request it - in all my years of having MS I have never seen my scans and monitoring is slipping (I always arrange my own blood tests through GP and am thankful for the brilliant NHS app so I can check my results).
Have tried leaving messages/sending emails for the MS specialist nurse to no avail (and I appreciate they are busy) so pretty much feel left in the dark.
I am very happy to 'get on with it' but obviously when times are tough (and today was one of those days as I had a heavy fall with leg giving way out of the blue!) it would be nice to see (or even speak/email) someone to keep on top of this disease as my biggest fear of all is that my MS is smouldering away.
Hard to self manage when GP practices aren’t supportive of us. I’ve spent part of 3 days trying to get adequate treatment for a UTI, the previously Drs open to suggestions and dialogue have left due to burn out. Frustrated with blocking by admin & a new triage computer system which seems to bypass the actual clinicians there. Have been refused medication for eyes which is working well for me as I learned about in MS Selfie or Barts blog Oct 2021 (not sure exactly) as I’m told to buy eyedrops for dry eyes OTC, nooooooo idea.
You maybe interested to know that you can purchase Trimenthoprim via online pharmacies.
Not sold for a current UTI, but in the event of a future infection, and they will take your GP surgery details so as to notify them of the purchase - this is a requirement to enable you to buy it.
I only learned about this very recently and using a site called Doctor Fox I now have a packet sitting safely in the cupboard.
I also have a urine sample test kit so I can be sure I’ve reason to take them and am not using antibiotics unnecessarily.
However, it certainly beats waiting several days for treatment to be made available via a GP, especially knowing ProfG has previously highlighted the issues of having an ITU for those of us with the disease.
There are many issues that remain unresolved in multiple sclerosis. If a drug fails and for instance, it is Ocrelizumab, the next treatment option is murky. Treatment options for smoldering MS is unresolved. How to approach plunging immunoglobulin levels following use of certain medications is unchartered terrain.
What the NHS has done to me has been worse than having MS. And they've made my MS so much worse. Plus PTSD. The biggest problem is access to diagnosis. It took me literally decades to get a diagnosis, since I was a child, and I only got it by diagnosing myself and going private. I should have been able to insist on a referral to a neurologist and MRI scan, but I couldn't get past the gatekeepers.
I'm now in a totally different position, under Royal London Hospital. I don't care about problems I face now, they're literally nothing compared to what I've been through, but it would help if I could access my test results. I've never managed to get hold of my MRI scans, and I'm not told my blood test results. Every month I have to request for my GP to telephone me and tell me my RLH results. I could look myself online if I was just given access.
NICE is a part of the problem. The guidelines should state that if someone has any symptoms of MS they have to be referred to a neurologist and for an MRI scan, and the Chronic Fatigue Syndrome guidelines need to say that someone can't be labeled with that unless they've at least had an MRI scan. It's too easy for the NHS to just throw people away.
The reality is, even people who are lucky enough to get a referal to a neurologist and a diagnosis, are then self-managing their MS other than DMT's. It's a gigantic improvement for me, but we're still lucky if we get one neurologist appointment a year. I'm lucky to have an MS nurse who will email with me, and who will help with benefits, but when she retires I doubt I'll get that. And she arranges got me to see my neurologist. GP's have destroyed my life, not helped me. I've always self-managed my condition, I've had no choice, but I need letters of support, and access to tests and medications.
I've got to the podcast & comments 3 days late, which gives a good perspective.
1. I totally support the concept of self-management in MS care
2. As said above, us MS-Selfie subscribers are most likely in the vanguard of self-management - intelligent, enquiring and self-determining. Within wider society, there will always be leaders, followers, the helpless & disinterested.
3. Many pwMS are not working or light working, so MS is the biggest thing in their lives. They have time to invest in their own research to be informed. In the US, the phrase Co-Consultant is sometimes used for well-informed patients and they have the respect & credibilty from their Consultants & Team.
4. Self-management, like most things these days, will probably need an App!
5. Will the self-management App provide data reliable enough to be used by the professionals, or will it corrupt the big data by user ineptitude, apathy or just inaccuracy?
6. Self-management creates support & monitoring issues. Could it leave practitioners open to claims of negligence if patients lay blame and supervisory controls were not being applied?
A few other comments:
* GP's should be allowed to commission MRI's, so that the results are sent to Neuroilogist with the first appoinrtment following a GP referral. Saves the double-bounce delay in diagnosis following initial referral.
* Too many medical practitioners rely on the gatekeeper mentality - one step short of beating back their patients with a stick. The have to cede control without feeling threatened. Training issue. See #3 above about co-consult.
* Patients manage to negotiate PIP applications and other detailed processes where success depends on the ability to communicate issues as well as the underlying impairment. Roll out self-management based on some sort of test of ability to cope with complicated processes, mmeasurement & feedback.
* Self-management would in part be an additional tool rather than a replacement for patient care. Needs to be sold to patients & Government as an improvement.
Your podcasts are probably the most informing pieces of information for people with MS.
I am regularly appalled by the lack of backup to the NHS services. It’s a disservice to people with MS (text payers) who are unable to get access to the right medical support because of bad planning by government. Thanks Mary-Ann 
Absolutely agree that we should manage our own conditions. Unfortunately the current NHS leaves many of us to manage it without giving us the information we need (e.g. blood test results, access to scans, etc). This, alongside the unjoined up nature of the system makes it very difficult.
I agree with what you said that people with MS should be able to mange their symptoms and conditions. We have our skin in the game everyday and it's a no brainer to me to want to make sure you are able to manage your own symptoms.
I can well believe and personally know that the systems being used by the NHS are outdated or legacy. Its a conundrum that will not be solved any time soon. The NHS sometimes seems to me like the Titanic and work will be needed to get a rudder that is many times larger than the current one. I worked with a customer in the past with over 500 applications, apps and processes that we developed to deal with the problems that the main system had. I think it was great that people found a way to be able to work more efficiently and I have been a fan of crowdsourcing solutions ever since.
Getting input from users or patients and making changes based on their (our) feedback will allow actions to be prioritized to address issues and concerns. The team created a dashboard of the feedback received from users. The feedback was prioritized and dates put to when the issues will be looked at and addressed or reasons why the issue would not be addressed or when it would be in the future. Having a dashboard that can be reviewed by staff or patients to refer to and see when their issue will be reviewed seemed to resonate and I think it would do the same for MS and other patients too.
Castles gave way to free market towns in the past and moving from a hub and spoke model will be important. I wonder if there is a cause for the increase in MS patients being identified or where there always so many in the past that were missed?
Judging from comments on social media platforms from ms patients and from my own experience:
1. Diagnosis process. Many people have clearly symptoms of ms, but drs are reluctant to make diagnosis and .
2. Many people seem to have their symptoms dismissed as all in their head.
3. Once diagnosed- Fear. MS is a tough diagnosis. I believe this comes from lack of info. We do research but aren’t skilled medical professionals so some of what we read can be terrifying. Fortunately many of us have found you and some of your colleagues for good info along with having excellent neurologists. I find Dr. Aron Boster’s podcasts informative and calming. More podcasts and ability to ask questions about general ms issues would be immensely helpful.
4. Access to your ms dr and/or nurse via email, text, or secure communication site for questions & concerns rather than wait 6 months for an appointment and have fear escalate.
5. Neurologists partner with and recommend sooner neuro physical therapists. There also are a few on social media that specifically target ms. For me, this goes in the ‘I wish I knew then what I know now” and I wish my neurologist had pushed neuro physical therapy sooner.
Thank you for what you do and sorry I went too long and hope I hit the topic.
I totally agree the system is broken. When it works it’s great. Ive been very impressed by the monitoring of starting on Mayzent but very unimpressed at the fact that I keep ringing and emailing various people for help with spasticity and pain but nobody gets back to me. I think its appalling not to be helped quickly with this. Living with chronic low/medium level pain is exhausting . So to be honest I feel as if I am self managing , read lots, exercise, diet etc..but there are times when you need access to a professional . I hate having to make a nuisance of myself in order to be heard.
I know how that feels and all I can do is put my head down and carry on trying. Its bad when Pain Dr's tell me that I have tried all their meds they use and Ketamine is the only other option to manage pain. Coming from Africa I will always choose nature over pharma. I wonder if the number of MS nurses can be increased and they can become prescribing practitioners to help consultants.
I am someone who is as well as I am thanks to Bart’s MS Blog/Aaron Boster/MS News Today and most recently your Selfie site.
Access to these sites led to my successfully achieving treatment with Alem, as someone who was treatment naive at the time. It’s the reason for so many things: from my continuing to exercise, to swallowing things like D-Mannose and Lipoic Acid, and doing activities to benefit brain health.
It was my sister, already living with another autoimmune system, who advised me to insist on copies of every test and scan result.
Added to which, I’ve had the advantage, lacking for so many people with MS, of being able to afford resources such as gym membership and access to a neuro physiotherapist.
Nothing of what has been of benefit in regards to self management has come from charity sites or from the clinicians I’ve had contact with.
The best I’ve had from the clinical input has been the agreement to provide treatment with Alem - for which I shall always be eternally grateful.
I suspect, if my experience is anything to go by, that self care is happening by the back door, so-to-speak.
Since being given back to the local centre, I’ve realised services are badly overstretched locally, so that I fully appreciate why I’ve not been seen in person by a neuro since 2019 and why the provision from the MS nurse is a phone call once every six months (and I’ve never met her!)
Without the access to all those sites and provisions I’ve referenced there is a likelihood I would have seen evidence of PIRA. In fact, I was seeing more evidence of foot drop last year and it was utilising the eversion exercise provided by the neuro physio that has resolved this problem, at least for now.
Personally I’d like to see far, far more focus on guiding patients in self care and fully endorse the steps required, as evidenced in your parallel with Type One.
But I am also conscious of the fact that self-care requires that individuals are not only educated and enabled in this, but that they as people have and can maintain the motivation to sustain all relevant measures, and have the strength to assert themselves when they are either slipping into being wide of the mark in what’s in their best interests; also strong enough to press the NHS contacts when they have the need of direct medical care, or input.
Another issue is the ‘don’t wanna know/head in the sand’ mentality that is totally understandable when diagnosed with a chronic disease that is degenerative, for which there is no cure.
This will, of course, always undermine the capacity for self care to apply to everyone with MS. Let’s face it, those of us who access this site, are most probably those motivated to be as knowledgeable and proactive as possible!
This presents one, of I’m sure, lots of arguments for continued monitoring by clinicians and is something that would need to be allowed for in the pursuit of a self-care model of practice.
I’d like to wish you all the very best in trying to drive this forward, because the the NHS needs it and PwMS will, by-and-large, be far better off for it!
I was essentially left to self-manage - at diagnosis my neurologist told me to come back when I couldn't live with it anymore. 10 years went by during which I had no relapses or no major symptoms which made me 'go back' to seek further help. Eventually had an MRi 11 years after diagnosis which showed a massive brain and spinal load of lesions which are now causing me to progress quite quickly. While I do agree that we have to self-manage and don't have an answer for the strain the NHS is under, I cannot help thinking that if I had been managed correctly at the start I wouldn't be in this position now.
While I may sound ancient ( 62 yrs old) As I have said previously my Neurologist and M.S.nurse are extremely difficult to pin down for questions and answers . They are concentrating on new younger patients to take part in trials etcetera. As I have said previously I have two daughters and am all for this but beginning to feel like a forgotten generation. I personally have never been offered to take part in any trials ( been promised but never came to fruition) . So would be happy to have more say in my personal health and where I do agree some G.P.s are overworked there are many in my experience who are not!!
Beverley, you are not ancient. (I am!) But you’re absolutely correct. One gets to a certain age and neurologists here in the states become rather uninterested in treatment, even though they could do a better job of of symptom management. As I’ve said on here previously, I’ve been offered Mayzent or nothing. And I’m too old. Best to you. I get it.
Thanks for acknowledging my comment some Neurologists in the UK also forget once you get to
a certain maybe us oldies should start standing up and being noticed!!!
I agree that more consideration and attention needs to be given to people who are older as well as the same for the younger generations living with MS.
I’m 58 and was diagnosed age 51. I subsequently learned that ‘late onset’ MS where women age 50-64 are diagnosed has more than doubled.
I was fortunate to see a neurologist who didn’t see my age as a barrier to treatment with Alem. However a lot of neuros are clearly anxious about treating older patients or see it as an unnecessary waste.
This is very shortsighted, ignoring the role many more mature women have in our society:
A lot of my friends are now providing childcare for their grandchildren or homes to their adult children struggling with the cost of living or divorce.
MS self-management may be possible for readers of this blog but this is the minority. I attended a mindfulness course run by the MS Trust recently and i was shocked at how uninformed some of the patients were despite having MS for 10+ years. You may have covered it previously but any theories on why the prevalence of MS is increasing or is this just because of better diagnostic tools? smoking for instance, one of the significant risk factors has rapidly reduced
This is why every person with MS need to go on a course to teach them about MS and give them the self-management skills and knowledge to navigate the NHS or their own healthcare systems.
Not to make light or insult, but self management skills and knowledge are tough obstacles for (I'll say) one half of the crowd. That's why (in my opinion) you see so much discounting of science professionals and the like all over the place, backed by denigration of same by smarter others who stand to gain from their opinions being listened to by misguided discounters. Sounds paranoid...
Not sure why the incidence is increasing, but it may be due to increasing vitamin D deficiency, childhood obesity, changes in our diet and microbiome and later EBV infection.
I wonder about this also. I was not born in a cold climate, for which I was dismissed by several neurologists from the beginning. However, my immigrant father had seen two small siblings die. I had Thallessimia B at a very young age, and I literally wasn’t allowed out of the house. He was terror stricken. I’m sure I had zero Vitamin D!!! (Not funny.)
The system is broken. I am pretty much trying to self manage my MS and this site helps to keep me informed for which many thanks Prof G!
The MS service where I live is non existent. I am on DMF but was told by my neuro last year we would meet again in 2 years! Last MRI was about 5 years ago and I had to specifically request it - in all my years of having MS I have never seen my scans and monitoring is slipping (I always arrange my own blood tests through GP and am thankful for the brilliant NHS app so I can check my results).
Have tried leaving messages/sending emails for the MS specialist nurse to no avail (and I appreciate they are busy) so pretty much feel left in the dark.
I am very happy to 'get on with it' but obviously when times are tough (and today was one of those days as I had a heavy fall with leg giving way out of the blue!) it would be nice to see (or even speak/email) someone to keep on top of this disease as my biggest fear of all is that my MS is smouldering away.
Do you have a MS clinical nurse specialist? Call her.
Hard to self manage when GP practices aren’t supportive of us. I’ve spent part of 3 days trying to get adequate treatment for a UTI, the previously Drs open to suggestions and dialogue have left due to burn out. Frustrated with blocking by admin & a new triage computer system which seems to bypass the actual clinicians there. Have been refused medication for eyes which is working well for me as I learned about in MS Selfie or Barts blog Oct 2021 (not sure exactly) as I’m told to buy eyedrops for dry eyes OTC, nooooooo idea.
You maybe interested to know that you can purchase Trimenthoprim via online pharmacies.
Not sold for a current UTI, but in the event of a future infection, and they will take your GP surgery details so as to notify them of the purchase - this is a requirement to enable you to buy it.
I only learned about this very recently and using a site called Doctor Fox I now have a packet sitting safely in the cupboard.
I also have a urine sample test kit so I can be sure I’ve reason to take them and am not using antibiotics unnecessarily.
However, it certainly beats waiting several days for treatment to be made available via a GP, especially knowing ProfG has previously highlighted the issues of having an ITU for those of us with the disease.
Hope you’re now clear of your infection.
There are many issues that remain unresolved in multiple sclerosis. If a drug fails and for instance, it is Ocrelizumab, the next treatment option is murky. Treatment options for smoldering MS is unresolved. How to approach plunging immunoglobulin levels following use of certain medications is unchartered terrain.
What the NHS has done to me has been worse than having MS. And they've made my MS so much worse. Plus PTSD. The biggest problem is access to diagnosis. It took me literally decades to get a diagnosis, since I was a child, and I only got it by diagnosing myself and going private. I should have been able to insist on a referral to a neurologist and MRI scan, but I couldn't get past the gatekeepers.
I'm now in a totally different position, under Royal London Hospital. I don't care about problems I face now, they're literally nothing compared to what I've been through, but it would help if I could access my test results. I've never managed to get hold of my MRI scans, and I'm not told my blood test results. Every month I have to request for my GP to telephone me and tell me my RLH results. I could look myself online if I was just given access.
NICE is a part of the problem. The guidelines should state that if someone has any symptoms of MS they have to be referred to a neurologist and for an MRI scan, and the Chronic Fatigue Syndrome guidelines need to say that someone can't be labeled with that unless they've at least had an MRI scan. It's too easy for the NHS to just throw people away.
The reality is, even people who are lucky enough to get a referal to a neurologist and a diagnosis, are then self-managing their MS other than DMT's. It's a gigantic improvement for me, but we're still lucky if we get one neurologist appointment a year. I'm lucky to have an MS nurse who will email with me, and who will help with benefits, but when she retires I doubt I'll get that. And she arranges got me to see my neurologist. GP's have destroyed my life, not helped me. I've always self-managed my condition, I've had no choice, but I need letters of support, and access to tests and medications.
Hi Gavin
I've got to the podcast & comments 3 days late, which gives a good perspective.
1. I totally support the concept of self-management in MS care
2. As said above, us MS-Selfie subscribers are most likely in the vanguard of self-management - intelligent, enquiring and self-determining. Within wider society, there will always be leaders, followers, the helpless & disinterested.
3. Many pwMS are not working or light working, so MS is the biggest thing in their lives. They have time to invest in their own research to be informed. In the US, the phrase Co-Consultant is sometimes used for well-informed patients and they have the respect & credibilty from their Consultants & Team.
4. Self-management, like most things these days, will probably need an App!
5. Will the self-management App provide data reliable enough to be used by the professionals, or will it corrupt the big data by user ineptitude, apathy or just inaccuracy?
6. Self-management creates support & monitoring issues. Could it leave practitioners open to claims of negligence if patients lay blame and supervisory controls were not being applied?
A few other comments:
* GP's should be allowed to commission MRI's, so that the results are sent to Neuroilogist with the first appoinrtment following a GP referral. Saves the double-bounce delay in diagnosis following initial referral.
* Too many medical practitioners rely on the gatekeeper mentality - one step short of beating back their patients with a stick. The have to cede control without feeling threatened. Training issue. See #3 above about co-consult.
* Patients manage to negotiate PIP applications and other detailed processes where success depends on the ability to communicate issues as well as the underlying impairment. Roll out self-management based on some sort of test of ability to cope with complicated processes, mmeasurement & feedback.
* Self-management would in part be an additional tool rather than a replacement for patient care. Needs to be sold to patients & Government as an improvement.
Graeme
It’s in our memory! How to move!
Your podcasts are probably the most informing pieces of information for people with MS.
I am regularly appalled by the lack of backup to the NHS services. It’s a disservice to people with MS (text payers) who are unable to get access to the right medical support because of bad planning by government. Thanks Mary-Ann 
Absolutely agree that we should manage our own conditions. Unfortunately the current NHS leaves many of us to manage it without giving us the information we need (e.g. blood test results, access to scans, etc). This, alongside the unjoined up nature of the system makes it very difficult.
I agree with what you said that people with MS should be able to mange their symptoms and conditions. We have our skin in the game everyday and it's a no brainer to me to want to make sure you are able to manage your own symptoms.
I can well believe and personally know that the systems being used by the NHS are outdated or legacy. Its a conundrum that will not be solved any time soon. The NHS sometimes seems to me like the Titanic and work will be needed to get a rudder that is many times larger than the current one. I worked with a customer in the past with over 500 applications, apps and processes that we developed to deal with the problems that the main system had. I think it was great that people found a way to be able to work more efficiently and I have been a fan of crowdsourcing solutions ever since.
Getting input from users or patients and making changes based on their (our) feedback will allow actions to be prioritized to address issues and concerns. The team created a dashboard of the feedback received from users. The feedback was prioritized and dates put to when the issues will be looked at and addressed or reasons why the issue would not be addressed or when it would be in the future. Having a dashboard that can be reviewed by staff or patients to refer to and see when their issue will be reviewed seemed to resonate and I think it would do the same for MS and other patients too.
Castles gave way to free market towns in the past and moving from a hub and spoke model will be important. I wonder if there is a cause for the increase in MS patients being identified or where there always so many in the past that were missed?
I got my DNA tested recently by Ancestry and the results were surprising. Is there an option like this being worked on or could be developed I wonder. I saw the following article a few years ago and was wondering. https://multiplesclerosisnewstoday.com/news-posts/2016/08/19/blood-test-for-c-peptide-may-help-diagnose-ms/
Very true yes! Make care easy as it’s tough getting around sometimes! Doctors please listen! Make things affordable please
Judging from comments on social media platforms from ms patients and from my own experience:
1. Diagnosis process. Many people have clearly symptoms of ms, but drs are reluctant to make diagnosis and .
2. Many people seem to have their symptoms dismissed as all in their head.
3. Once diagnosed- Fear. MS is a tough diagnosis. I believe this comes from lack of info. We do research but aren’t skilled medical professionals so some of what we read can be terrifying. Fortunately many of us have found you and some of your colleagues for good info along with having excellent neurologists. I find Dr. Aron Boster’s podcasts informative and calming. More podcasts and ability to ask questions about general ms issues would be immensely helpful.
4. Access to your ms dr and/or nurse via email, text, or secure communication site for questions & concerns rather than wait 6 months for an appointment and have fear escalate.
5. Neurologists partner with and recommend sooner neuro physical therapists. There also are a few on social media that specifically target ms. For me, this goes in the ‘I wish I knew then what I know now” and I wish my neurologist had pushed neuro physical therapy sooner.
Thank you for what you do and sorry I went too long and hope I hit the topic.