Thank you for being a neurologist that is really listening closely to pwMS, it makes an enormous difference - as part of the shield for whatever comes flying over the parapet!
I’d agree with it taking more than a neurologist and MS nurse( although I don’t seem to be able to speak to my MS nurses without a 5 month delay- they can’t even manage a holding email managing expectations in response to mine!), however, we’re far from achieving this sadly. My GP’s are less than pro active, and when I do have to contact them, they’re not interested in my MS. It’s frustrating and rather sad that we have to be in this situation where the person that is ill is having to drive, beg and chase everyone and everything. Sad, and worrying for our futures. It takes a long time to change a culture (7 years I believe ) and as I don’t see any will to change- I’m not sure I hold out much hope. We can’t keep using short staffing and the government (for not throwing tax payers money at it)- it will take excellent and inspiring levels of management centred on patient care to change this. Also, not just MS suffering from this situation (apathy)I’m sure. It’s worth saying that not all neurologists are interested, or engaged in patient care either, I had one tell me “I’ve patients much worse than you”- that was helpful information……
For a long time, I’ve hoped that the MS societies would have a list of places and people we may be able to get help from( regional variations accepted) . OT’s/social services/physios are just the same in levels of competence/interest in my experience. I have had help( but actually made my toe worse!) from nhs podiatry but initially the GP surgery said it wasn’t available to me. We need to be warriors in many ways when we have systemic illnesses. Sometimes we don’t have the energy to be warriors…….
Hi Gavin. Good luck at this.🍀 Thanks for the info.
It's not society....it's us family carers.
I care for my wife Portia lw very advanced MS now. I co-ordinate a very large medical multi-disciplinary team. I am effectively lead co-ordinator, I make it all happen, all come together. Without me, there would be huge gaps between the varied chunks of the vast non-MS focused NHS system.
We fell off a cliff after DMT's stopped, no neurology, no MS nurses, just GP. GP not MS specialist. Steep learning curve. We have effectively a partnership with the GP. They do the medical specifics, prescribing etc. I do the overall management, co-ordinating NHS CHC care, and palliative care and NHS general.
It's a full time job, along side my full time job. We need recognising. Your description 'society' is not accurate enough. It's family carers, there's not much in society beyond that. Be specific for our sake, or it's unseen.
Good luck at conference. Please feed our views into the Town Hall. We should be there too to be honest, we took are professional in our core responsibilities at the heart of the team, especially at very advanced MS stage.
PwMS want to feel safely held by the health care system. And we don’t. Maybe a clinical pathway as suggested above that GPs or MS nurses use as a check-in on regular appts would be nice. But there are few regular visits tabled by the system for us. We have to arrange them and check our records and check scans have gone from A to B etc. Secondly, I’d like to see some data on people who are doing well with an MS diagnosis. Data on those who are still ok when they die (from other or natural causes), who with or without DMTs don’t need ambulatory aids, who don’t have bladder dysfunction etc. to give us hope. Hearing all these awful things that are likely to befall us encourages us focus on the bad and possibly make it more likely, certainly make it more real. Collating some positive data will help us focus on the hopeful despite the diagnosis. Thank you.
For challenges after diagnosis I would include helping patients maintain healthy lifestyles that help MS. Referrals to PT/OT/ST early to improve function, reiterate at every visit how exercise and diet impacts MS. I feel like most of my visits discuss MRI findings, current disability status and DMTs and less overall MS management strategies. Referrals to specialists when needed. I was referred to a urologist early and felt that was very helpful.
The cards, yes! I love them; they are genius! Pass them out liberally! Aging and MS is tricky. I’m specifically looking at points 1,3 and 6. I used to have to advocate for my own bloodwork when I was on interferon beta for +/-25 years. Almost no bloodwork done by my neuro and thyroid levels were all over the board, as can happen. Comorbidities: not everything is MS. There are many flares in the neid/smouldering stage as we age. But when “flares” persist, someone needs to investigate. I am having a gradual attack of something that, over the last year, has solely been attributed to MS flares, and no doubt I’ve had them with every UTI! The symptoms have been sneakily overlapping. Now my bloodwork and extensive initial lab work show all red blood counts crashed for starters. This appears to be a blood disease. So I’m off to a hematologist and everyone is in high gear. Note that all fatigue was MS related, persistent anemia was simply anemia of the chronically ill (eye roll). Now I feel like Shaun of the Dead and this is definitely not all MS. I can’t fight any infection. Having endured very high doses of chemotherapy in a clinical trial after my MS diagnosis, a blood disorder would not surprise me at all at my advanced age. We neids and oldies need to be monitored closely. Put it out there, Pro G! And many thanks, as always, for your support for us!
MS bladder problems are usually dealt with by a neuro urologist. I spent the first 8 years struggling with bladder problems and my GP just didn't know how to help. My then neurologist never discussed or dealt with bladdder problems. Eventually I was referred to a urologist. But there seems to be no communication between the urologist and the MS team.
It's frustrating to have zero joined up care. My neurologist and MS nurse don't ever discuss bladder issues. I have to tell them what tests/scans I have had with the urology depr. It would help if neurologists dealt with ALL symptoms of MS. For example, a multi disciplinary team working together to discuss the MS patient. I know it happens in the USA. You see one neurologist and he/she treats ALL the MS symptoms, including bladder, bowel, pain, walking rehab, RLS, sexual dysfunction, mood, etc. It's the same in Sweden. The neurologist takes over ALL treatment. Sadly, with the current state of the NHS, these sort of improvements will probably never happen in the UK. I wonder if private patients receive care in this way?? Or if any UK hospitals have a multi disciplinary MS team that can treat ALL the various MS symptoms?
As I’ve said in past comments, there is clearly a postcode lottery with how MS is managed/ mismanaged. I would suggest that there should be a clinical pathway that is accessible to all relevant HCPs. The basic format can be adjusted according to each area, but really it could be a teaching tool as much as anything else...without necessarily flagging it up as that. We had a similar situation back in the day with Lymphoedema...and did just that. Quite different but nevertheless did the job of educating HCPs and how patients would be managed initially and long term and by whom; primarily Nurse specialists and Physios which kind of made it easier. A keen Junior Dr could take it on, as happened with another issue which was resolved in this way. Also, everything being digital should make it a much simpler project and solution.
Professor Giovannoni I can assure you that when your head appears above the parapet you will be a metaphorical army with you!
Your constant fight for pwms is humbling and it’s incredible to have you in our corner.
In my experience Gps have very little knowledge of MS difficulties and I don’t blame them as they have a vast amount of illnesses to be on the lookout for but the difference is a Gp that doesn’t know but is willing to listen versus one that doesn’t know and isn’t interested in listening.
My previous 2 neurologists fall into the second category with an added can’t be bothered approach!
Luckily I now have The Best!
We as a family have just switched Gp practices and our new Gp is a great listener and very willing to work together for the best outcome.
I have had issues with urinary urgency and with the help of my fantastic MS nurse and new Gp an appointment cam through quite quickly and was addressed. I am now 57 years old and I suppose as we get older our organs aren’t as efficient as they were plus throwing MS into the mix probably speeds up that process and gives us more of a challenge to fight.
So yes it’s not just the neurologist and MS nurse but the entire health community working together that will get the best results for everybody!
MS is a pain in the ass but i also find it fascinating! I have spoken to lots of pwms and stories differ hugely. The people I worry about are those that do not have a good neurologist or MS nurse or Gp and are not aware of that and therefore just go along with whatever is or isn’t suggested meanwhile slowly declining.
Q, What can be done?
A, You can lead a horse to water…… but they’re not going to drink it unless they are aware of the benefits.
Lots of people don’t realise they have options and therefore a type of information pack all about MS would be helpful for them to outline treatments, potential treatments, future treatments, combination therapies, MS communities etc.
When I was diagnosed I was given a couple of small leaflets informing me how MS will slowly reduce my ability to do most things!
Nothing positive and no direction to look in!
Hopefully Professor you will have a successful seminar!
I’d add to the list of MS in the ageing person topics 1. ‘Future proofing’ re support to change career in order to keep working plus where to live (more bungalows & ground floor flats with gardens needed!) 2. Advanced care directives.
It takes a village... it also affects the village, and beyond. As many people as possible should be/get involved, as we all should with most things affecting the afflicted and most vulnerable. Not everyone will agree with that statement. But that's okay, just a sizable group would be helpful.
This does not mean that everyone needs to get involved strictly, or intimately, with everyone else with MS (or further, any serious health issues that adversely impact their lives). There are plenty of ways to help make things work better, and life to have more positive results for everyone. Just speaking up has a big impact in the world. Communication with the people we know, and the people we interact with regularly, can change a lot for the benefit of many. Inform people about MS; pass on literature about new findings in MS to your doctors; get involved by volunteering; or even just paying attention to social issues or legislation, and making your voice known, and count (hopefully in the affirmative).
Unfortunately there is too much indifference and apathy nowadays, which is actually a derivation of the NIMBY (Not In My Backyard) mindset. But this just ends up compounding the problems people are trying to ignore, dissociate from, or conceivably avoid. Problems are anaerobic, and as such will grow without care as opposed to confronting and addressing them. And addressing the problems is ultimately to the benefit of everyone, as it can reduce costs and suffering, and can improve the quality of life for the people with MS directly, as well as improving society in many ways indirectly.
Another issue that is really important and can greatly benefit people with multiple sclerosis is financial planning, and explaining all the different types of planning and vehicles to prepare for eventualities, and to have a plan in place to provide contingencies for those possible eventualities. Also explaining and indicating programs, discounts, entitlements, and organizations that can provide resources to help with managing the expenses associated with the disease, and its effects in the rest of the lives of pwMS. And sometimes the lives of the people directly around them.
highlighting the risk of patients progressing (to EDSS 4 and 6) with RR-LOMS being 3 times higher than that of patients with RR-AOMS yet they are less likely to be prescribed a high efficacy DMT.
Also biological age v actual age when prescribing DMTs, how this affects efficacy and a patients ability to deal with side-effects.
Many thanks for all the information you continue to provide.
I recall a letter written to the GP from Neuro. It stated Mrs P has come to her own conclusion that her MS is now Secondary. He then stated that he conceded this was most likely the case. 🤷♀️
I know his concern was about me not being able to access DMTs. However if I’m not Relapsing I wasn’t prepared to use such powerful meds. Especially after Fingolimod causing liver problems. Sometime patients just know what’s best for them and where they are on this MS map.
Thank you for being a neurologist that is really listening closely to pwMS, it makes an enormous difference - as part of the shield for whatever comes flying over the parapet!
I’d agree with it taking more than a neurologist and MS nurse( although I don’t seem to be able to speak to my MS nurses without a 5 month delay- they can’t even manage a holding email managing expectations in response to mine!), however, we’re far from achieving this sadly. My GP’s are less than pro active, and when I do have to contact them, they’re not interested in my MS. It’s frustrating and rather sad that we have to be in this situation where the person that is ill is having to drive, beg and chase everyone and everything. Sad, and worrying for our futures. It takes a long time to change a culture (7 years I believe ) and as I don’t see any will to change- I’m not sure I hold out much hope. We can’t keep using short staffing and the government (for not throwing tax payers money at it)- it will take excellent and inspiring levels of management centred on patient care to change this. Also, not just MS suffering from this situation (apathy)I’m sure. It’s worth saying that not all neurologists are interested, or engaged in patient care either, I had one tell me “I’ve patients much worse than you”- that was helpful information……
For a long time, I’ve hoped that the MS societies would have a list of places and people we may be able to get help from( regional variations accepted) . OT’s/social services/physios are just the same in levels of competence/interest in my experience. I have had help( but actually made my toe worse!) from nhs podiatry but initially the GP surgery said it wasn’t available to me. We need to be warriors in many ways when we have systemic illnesses. Sometimes we don’t have the energy to be warriors…….
Hi Gavin. Good luck at this.🍀 Thanks for the info.
It's not society....it's us family carers.
I care for my wife Portia lw very advanced MS now. I co-ordinate a very large medical multi-disciplinary team. I am effectively lead co-ordinator, I make it all happen, all come together. Without me, there would be huge gaps between the varied chunks of the vast non-MS focused NHS system.
We fell off a cliff after DMT's stopped, no neurology, no MS nurses, just GP. GP not MS specialist. Steep learning curve. We have effectively a partnership with the GP. They do the medical specifics, prescribing etc. I do the overall management, co-ordinating NHS CHC care, and palliative care and NHS general.
It's a full time job, along side my full time job. We need recognising. Your description 'society' is not accurate enough. It's family carers, there's not much in society beyond that. Be specific for our sake, or it's unseen.
Good luck at conference. Please feed our views into the Town Hall. We should be there too to be honest, we took are professional in our core responsibilities at the heart of the team, especially at very advanced MS stage.
Thanks
Mark, & Portia 💙
PwMS want to feel safely held by the health care system. And we don’t. Maybe a clinical pathway as suggested above that GPs or MS nurses use as a check-in on regular appts would be nice. But there are few regular visits tabled by the system for us. We have to arrange them and check our records and check scans have gone from A to B etc. Secondly, I’d like to see some data on people who are doing well with an MS diagnosis. Data on those who are still ok when they die (from other or natural causes), who with or without DMTs don’t need ambulatory aids, who don’t have bladder dysfunction etc. to give us hope. Hearing all these awful things that are likely to befall us encourages us focus on the bad and possibly make it more likely, certainly make it more real. Collating some positive data will help us focus on the hopeful despite the diagnosis. Thank you.
For challenges after diagnosis I would include helping patients maintain healthy lifestyles that help MS. Referrals to PT/OT/ST early to improve function, reiterate at every visit how exercise and diet impacts MS. I feel like most of my visits discuss MRI findings, current disability status and DMTs and less overall MS management strategies. Referrals to specialists when needed. I was referred to a urologist early and felt that was very helpful.
The cards, yes! I love them; they are genius! Pass them out liberally! Aging and MS is tricky. I’m specifically looking at points 1,3 and 6. I used to have to advocate for my own bloodwork when I was on interferon beta for +/-25 years. Almost no bloodwork done by my neuro and thyroid levels were all over the board, as can happen. Comorbidities: not everything is MS. There are many flares in the neid/smouldering stage as we age. But when “flares” persist, someone needs to investigate. I am having a gradual attack of something that, over the last year, has solely been attributed to MS flares, and no doubt I’ve had them with every UTI! The symptoms have been sneakily overlapping. Now my bloodwork and extensive initial lab work show all red blood counts crashed for starters. This appears to be a blood disease. So I’m off to a hematologist and everyone is in high gear. Note that all fatigue was MS related, persistent anemia was simply anemia of the chronically ill (eye roll). Now I feel like Shaun of the Dead and this is definitely not all MS. I can’t fight any infection. Having endured very high doses of chemotherapy in a clinical trial after my MS diagnosis, a blood disorder would not surprise me at all at my advanced age. We neids and oldies need to be monitored closely. Put it out there, Pro G! And many thanks, as always, for your support for us!
MS bladder problems are usually dealt with by a neuro urologist. I spent the first 8 years struggling with bladder problems and my GP just didn't know how to help. My then neurologist never discussed or dealt with bladdder problems. Eventually I was referred to a urologist. But there seems to be no communication between the urologist and the MS team.
It's frustrating to have zero joined up care. My neurologist and MS nurse don't ever discuss bladder issues. I have to tell them what tests/scans I have had with the urology depr. It would help if neurologists dealt with ALL symptoms of MS. For example, a multi disciplinary team working together to discuss the MS patient. I know it happens in the USA. You see one neurologist and he/she treats ALL the MS symptoms, including bladder, bowel, pain, walking rehab, RLS, sexual dysfunction, mood, etc. It's the same in Sweden. The neurologist takes over ALL treatment. Sadly, with the current state of the NHS, these sort of improvements will probably never happen in the UK. I wonder if private patients receive care in this way?? Or if any UK hospitals have a multi disciplinary MS team that can treat ALL the various MS symptoms?
Thank you! The MS selfie info cards are excellent. Lots of hard work gone into those.
As I’ve said in past comments, there is clearly a postcode lottery with how MS is managed/ mismanaged. I would suggest that there should be a clinical pathway that is accessible to all relevant HCPs. The basic format can be adjusted according to each area, but really it could be a teaching tool as much as anything else...without necessarily flagging it up as that. We had a similar situation back in the day with Lymphoedema...and did just that. Quite different but nevertheless did the job of educating HCPs and how patients would be managed initially and long term and by whom; primarily Nurse specialists and Physios which kind of made it easier. A keen Junior Dr could take it on, as happened with another issue which was resolved in this way. Also, everything being digital should make it a much simpler project and solution.
Thank you Gavin, I would so love to hear your talk on Aging with MS, but unfortunately I can’t attend the conference. Will it be recorded?
Professor Giovannoni I can assure you that when your head appears above the parapet you will be a metaphorical army with you!
Your constant fight for pwms is humbling and it’s incredible to have you in our corner.
In my experience Gps have very little knowledge of MS difficulties and I don’t blame them as they have a vast amount of illnesses to be on the lookout for but the difference is a Gp that doesn’t know but is willing to listen versus one that doesn’t know and isn’t interested in listening.
My previous 2 neurologists fall into the second category with an added can’t be bothered approach!
Luckily I now have The Best!
We as a family have just switched Gp practices and our new Gp is a great listener and very willing to work together for the best outcome.
I have had issues with urinary urgency and with the help of my fantastic MS nurse and new Gp an appointment cam through quite quickly and was addressed. I am now 57 years old and I suppose as we get older our organs aren’t as efficient as they were plus throwing MS into the mix probably speeds up that process and gives us more of a challenge to fight.
So yes it’s not just the neurologist and MS nurse but the entire health community working together that will get the best results for everybody!
MS is a pain in the ass but i also find it fascinating! I have spoken to lots of pwms and stories differ hugely. The people I worry about are those that do not have a good neurologist or MS nurse or Gp and are not aware of that and therefore just go along with whatever is or isn’t suggested meanwhile slowly declining.
Q, What can be done?
A, You can lead a horse to water…… but they’re not going to drink it unless they are aware of the benefits.
Lots of people don’t realise they have options and therefore a type of information pack all about MS would be helpful for them to outline treatments, potential treatments, future treatments, combination therapies, MS communities etc.
When I was diagnosed I was given a couple of small leaflets informing me how MS will slowly reduce my ability to do most things!
Nothing positive and no direction to look in!
Hopefully Professor you will have a successful seminar!
I’d add to the list of MS in the ageing person topics 1. ‘Future proofing’ re support to change career in order to keep working plus where to live (more bungalows & ground floor flats with gardens needed!) 2. Advanced care directives.
It takes a village... it also affects the village, and beyond. As many people as possible should be/get involved, as we all should with most things affecting the afflicted and most vulnerable. Not everyone will agree with that statement. But that's okay, just a sizable group would be helpful.
This does not mean that everyone needs to get involved strictly, or intimately, with everyone else with MS (or further, any serious health issues that adversely impact their lives). There are plenty of ways to help make things work better, and life to have more positive results for everyone. Just speaking up has a big impact in the world. Communication with the people we know, and the people we interact with regularly, can change a lot for the benefit of many. Inform people about MS; pass on literature about new findings in MS to your doctors; get involved by volunteering; or even just paying attention to social issues or legislation, and making your voice known, and count (hopefully in the affirmative).
Unfortunately there is too much indifference and apathy nowadays, which is actually a derivation of the NIMBY (Not In My Backyard) mindset. But this just ends up compounding the problems people are trying to ignore, dissociate from, or conceivably avoid. Problems are anaerobic, and as such will grow without care as opposed to confronting and addressing them. And addressing the problems is ultimately to the benefit of everyone, as it can reduce costs and suffering, and can improve the quality of life for the people with MS directly, as well as improving society in many ways indirectly.
Another issue that is really important and can greatly benefit people with multiple sclerosis is financial planning, and explaining all the different types of planning and vehicles to prepare for eventualities, and to have a plan in place to provide contingencies for those possible eventualities. Also explaining and indicating programs, discounts, entitlements, and organizations that can provide resources to help with managing the expenses associated with the disease, and its effects in the rest of the lives of pwMS. And sometimes the lives of the people directly around them.
Thank for all the AMAZING work you do Dr Giovannoni!
QUESTION
For Pw/MS not attending your “Ageing with MS” seminar… will you be sharing your presentation?
SUGGESTION for “Ageing with MS”
People over 50 can be and are Dx w/ MS, thus the importance of
— listening closely to patient history … and if it sounds like MS
— timely ordering of
>> blood tests
>> spinal + brain MRIs
>> lumbar puncture
For '4. Managing DMTs in the older patient with MS'
If it's not already in your plan, can you consider discussing the information in 'Clinical Characteristics and Long-Term Outcomes of Late-Onset Multiple Sclerosis' https://www.neurology.org/doi/10.1212/WNL.0000000000208051
highlighting the risk of patients progressing (to EDSS 4 and 6) with RR-LOMS being 3 times higher than that of patients with RR-AOMS yet they are less likely to be prescribed a high efficacy DMT.
Also biological age v actual age when prescribing DMTs, how this affects efficacy and a patients ability to deal with side-effects.
Many thanks for all the information you continue to provide.
I recall a letter written to the GP from Neuro. It stated Mrs P has come to her own conclusion that her MS is now Secondary. He then stated that he conceded this was most likely the case. 🤷♀️
I know his concern was about me not being able to access DMTs. However if I’m not Relapsing I wasn’t prepared to use such powerful meds. Especially after Fingolimod causing liver problems. Sometime patients just know what’s best for them and where they are on this MS map.