This story is very familiar to me as a patient. I have a hands-off approach with my local MS team now, because managing the rather fraught encounters with MS nurses is too challenging. It seems impossible to tackle the issues with medical gaslighting and paternalistic attitudes towards patients, when NHS staff are already being systematically harmed by their employer. Hurt people hurt people, after all. I don't want to push an already burnt-out person to be forced to learn new rules of engagement - I want a well-rested specialist to be supported in their professional development as cultures change.
Gavin Giovannoni, aka Prof G, asked Grok (X's AI Chatbot): "Why don't people trust the medical profession?"
@grok
Well, it seems like there's a bit of a trust deficit when it comes to the medical profession these days. People are questioning the motives and actions of doctors and medical institutions more than ever before. There are a few reasons for this growing mistrust:
Information Overload: With the rise of the internet and social media, people have access to a vast amount of information about health and medicine. This can be both a blessing and a curse. While it allows people to educate themselves, it also exposes them to conflicting information and misinformation, making it difficult to know what to believe.
Historical Mistrust: There have been instances in the past where medical professionals and institutions have made mistakes or acted unethically. The infamous Tuskegee Syphilis Study, where African American men were intentionally left untreated for syphilis, is a prime example. These historical events have left a lasting impact on public trust.
Conflicting Information: Medical science is constantly evolving, and new research can sometimes contradict previously accepted beliefs. This can lead to confusion and mistrust when people feel that the advice they're receiving is inconsistent or contradictory.
Personal Experiences: Many people have had negative experiences with the healthcare system, such as misdiagnoses, medical errors, or feeling dismissed by their doctors. These personal experiences can contribute to a lack of trust.
Political and Social Factors: In recent years, there has been a rise in political and social movements that question the motives of large institutions, including the medical profession. This can lead to a general distrust of authority figures, including doctors and medical institutions.
Misinformation and Conspiracy Theories: The spread of misinformation and conspiracy theories about medical treatments, vaccines, and the motives of medical professionals can further erode public trust.
Lack of Diversity and Representation: The medical profession has historically been dominated by white, male doctors. This lack of diversity and representation can make it difficult for people from marginalized communities to trust that their needs and perspectives are being taken into account.
Commercialization of Medicine: The increasing commercialization of medicine, with pharmaceutical companies and insurance companies playing a larger role in healthcare, can lead to concerns about conflicts of interest and the prioritization of profit over patient care.
Lack of Transparency: The medical profession can sometimes be opaque, with medical decisions and treatments not always being explained clearly to patients. This lack of transparency can lead to mistrust.
Distrust in Institutions: In general, there has been a decline in trust in institutions, including the government, media, and large corporations. This general distrust can extend to the medical profession as well.
So, there you have it, a laundry list of reasons why people might not trust the medical profession as much as they used to. It's a complex issue, and it's not going to be solved overnight. But hey, at least we have the internet to keep us informed and entertained while we wait for the medical profession to regain our trust.
These bullet points aren’t wrong, but they’re trite and anodyne. They may or may not apply in any particular situation. The value of harnessing massive computing power to query masses of data lies in quickly recognizing patterns that a human would have difficulty discerning, and secondarily in retrieving hard-to-reach data points of interest. This result is the 180°-degree opposite: something a first-year undergraduate ought to be able to pull together in a couple of hours.
Are you asking what drives patients to seek a second, third, fourth opinion?
- Medical gaslighting
- “MS personality” bias
- Wanting to be heard
- Hoping not to be infantilised by the next HCP giving care.
(I have not necessarily experienced the above).
I love MS-selfie but this post today has made me feel really low, especially the comment made by one of the MS Nurses. Fellow HCP here treating patients at their most vulnerable (recently MS focused). I am reading today as both a patient and a caregiver, I’d never advocate for shutting down anything which supports those in need, no matter how much work it generates for consultants and nurses. Why are we in the profession?
The answer is, because of your level of communication people trust you. When they don’t hear from or get ignored by their local provider that reduces trust. The answer isn’t shutting down MS-Selfie but properly resourcing local services. More neurologists trained and deployed, regular reviews and communication at a local level. To say something is too good so shut it down is symptomatic of NHS thinking. The NHS is in need of fundamental reform.
If you can’t see everyone who seeks a second opinion from you, wouldn’t that actually make MS-selfie an even more important resource to have out in the world? Shutting it down would only further limit the good you are able to do for people as an expert in MS.
Well I recently emailed my neurologist- her secretary on the email address at the top of her letters. It’s not something I’ve done before.
I saw her in March but feel like I’ve suddenly got a lot more spasticity and am finding walking harder. I explained and asked about Botox for spasticity.
The secretary responded for my neuro saying she’d said I may have an infection (why isn’t this being investigated??) and yes Botox is known to help spasticity. They even said to see my gp. A friend in Oz who gets Botox for his spasticity myst have checked Google after I’d been emailing him and said I ought to try a certain hospital as they have a spasticity clinic.
It’s the one I go to :(
How loud do I have to shout before getting help?
These are the reasons people with MS might seek second opinions. Because I’ve now lost faith in a neurologist who I thought was doing her best for me.
Of course you’re burnt out - we are too but we can’t always recover.
One conclusion you might draw from these replies, Prof G, is that many neurologists have failed to stay current regarding referrals that are available in their area. It really is not too much to ask for a neurology practice or centre to have this information to hand. We all sympathize up to a point, but this is an area where the behaviour is actually perverse. Not only do these neurologists and their staff let their patients down, they shoot themselves in the foot by not recommending action that might get the patients off their back for a few months.
It seems the old “diagnose and adios” mentality is still present in some quarters. I also feel too many neurologists, trained to laser-focus on the CNS, go into “here be dragons” mode on encountering a neuromuscular junction, whereupon they haul anchor and head back toward their home port. I got dismissive vibes about physiotherapy from neurologist I otherwise respected. But physio has helped me immensely and I feel strongly that it should be incorporated into MS care from the moment of diagnosis.
In the end what’s required of everyone in health care is a bit more humility. Enough, at least, to recognize the differences between science and certainty, accuracy and truth, and narcissism and suffering.
Dear Harriet, that is crazy. You are at the same clinic?? I get Botox for extreme spasticity. It has slowed down dystonias. Otoh, I’ve been blown off about other requests. I still can’t get a physiotherapist because their office is too busy to arrange it. I roll my eyes.
I think you probably have to say 'I'm sorry, but I just can't treat everyone, at least not to a standard I'm comfortable with'. Any one of us could ask for a second opinion with you and then understandably keep coming back, and you just don't have the capacity. Please don't shut down MS Selfie, that isn't the issue as the cat is already out of the bag and you already have a huge number of would-be patients out here! Keep the information coming and we'll do our best to self-manage in line with your guidance.
Indeed. I’ve learned so much from this site, not only from your excellent posts & empathetic replies, but also because you draw our attention to other relevant research and resources. There is so much information out there (legit and not)
I am a scientist and consider myself well-informed about MS, but I’m not an actual medic. When left to my own devices it can feel like looking for a needle in a haystack, as it can be very difficult to wade through vast amounts of content to identify what information is reliable & useful.
We really appreciate your generosity & support. It reminds me of the interactions I had with my PhD supervisor- I know I have the responsibility to do my own work, but your guidance helps point the way.
You are good at what you do that's why everyone would love to have you as their neuro. How many neuros (if you get to see one) and nurses just do box ticking and no tests. How many people with MS have an MRI every year (NICE 'rules'). I've gone over 35yrs with MS and have had 3 MRI's and finally have a neuro who is prepared to let me try a treatment (rebif) and the nurse said he is 'Liberal' and he thinks that everyone should be on treatment and is suprised I was offered anything because of my age. The nurse didn't sound too happy when I asked if I should have tried something years ago. Is there a postcode lottery for DMT's aswell.
I think you may have to question the Neuro that is treating them or in the very least make them aware of the alleged issue and failings. We the patients have every right to express any dissatisfaction with our treatment. We should not just be dismissed but given every right to question the Neuro. I have been left feeling “out of my depth” when speaking to my MS Neuro and even been told to look up Cladribine on Google for more info on it.
There is lots of info online for us MSers so we can have good knowledge on what can and can’t be done so be able to question our illness and treatment with the Neuro.
What also would help is a greater uniformity with all Neuro’s. There is always talk of one more likely to give something than others.
For me since diagnosis I have had to fight my hardest when at my weakest for things
I understand the sentiment of the patient completely.
I am outside London but travel to Charring Cross for treatment and consultations.
I have been referred to our local MS nurse team 3 times by my doctor over the last 9 years and the wall of silence is deafening.
The local MS neurologist isn’t one I have any confidence in - when comparing treatments at the MS therapy centre the patients treated by this person are invariably crying and frustrated because they aren’t being offered effective treatments, getting regular MRI’s or feeling ‘heard’ at all just left to waste away.
I have nothing but praise and respect for the team at CC and driving into the city is a small price to pay for a team that care.
That the local MS nurse team continues to ignore my existence despite the 3 referrals means that my opinion of them is somewhere between low and rock bottom and I don’t have a kind word for them at all
Please please keep the MS Selfie. I am in the US so won’t be coming to you for a second opinion. However your writing helps me immensely to try to understand MS, and living with MS. It also gives me areas to discuss with my own MS Neurologist. We too have teams that are very busy and don’t think to review in detail what you write and answer. We need you. Your writing bid incredibly important internationally. I’m amazed you take referrals so quickly and often. That’s unheard of here in US. I don’t have advice on that area I think you need to do what you own values and time allow. However the Selfie is one of the only places I trust to gain knowledge o living with MS, including your honesty on the hard stuff. We need you. Please don’t shut this down, please.
I think that ending the Selfie would be a mistake. It obviously limits what you can do for a certain group of patients, but it makes up for that by providing invaluable knowledge to significantly more people. We can then go to our medical professionals with more information and hopefully have a more productive appointment. I won't speak much on doctor burnout, except to say that I'm sure it is a part of the problem. That obviously wouldn't explain them being upset when patients want to get other people involved because things are moving too slowly. MS is so dangerous, there's no time to waste.
There are simply not enough neurologists within the NHS now to adequately deal with the number of people who now have MS! Services are overstretched, underfunded and staff clearly don’t have the time or energy to ‘care’ for and meet their patients needs!
As an MS sufferer I feel isolated, lonely and constantly worried about my MS. I have been with the same neurologist for 18 years now and have seen how things have massively changed over that time. For example I have just had my first MRI scan in 5 years-when I first started having scans they were every six months followed by an appointment with my neurologist. It’s really hard not to feel like nobody cares about you these days but as I said they simply don’t have the time to care!
I understand that there are lots of information sources, but the readers of MS Selfie trust you and appreciate the time that you have spent setting this sub stack up. It would be a shame if you felt pressure to shut it down.
The tone of the MS Selfie is well met by its readers. A lot of HCPs talk down to their patients so we are left looking for the answers to the questions we want answering.
We all know how bonker busy MS teams are. I know that my MS Team have over 800+ patients to care for. It is no wonder that the NHS is busting at the seams if this is only one example of a department at my local and largest hospital within my county.
‘One of my MS nurses told me that MS-Selfie had much to answer regarding my out-of-area workload. She has suggested closing it down to stem the referrals and requests for second opinions. Maybe she has a point.’
So her view is that you should hide your light under a bushel because you’re too good and MSr’s want ‘too good ‘
Utterly depressing. Credit to you for creating an environment where she can say such things and be heard , personally I have never in my career been listened to like that and certainly in my ‘career’ as a person with MS for 25 years plus never come even close to being listened to by the English NHS .
Thankfully I have moved to Scotland, the NHS there is funded and managed differently and they seem to get a lot more done . I’ve had a much better experience here .
But to the point - please don’t deprive us of your very accessible information. I have learned far more and self managed much better since finding your resources.
An informed patient should always be the goal. Surely ?
Yes,I agree. This column is helping to create better informed patients who are able to advocate for themselves. How can the answer be to go back to a pre-information age where the doctor played God and the patient was subjugated to just accepting the care plan without question? Surely, sacrificing our lives and health with sub-par treatment cannot ever be the answer to an overburdened health care system?
Via email:
This story is very familiar to me as a patient. I have a hands-off approach with my local MS team now, because managing the rather fraught encounters with MS nurses is too challenging. It seems impossible to tackle the issues with medical gaslighting and paternalistic attitudes towards patients, when NHS staff are already being systematically harmed by their employer. Hurt people hurt people, after all. I don't want to push an already burnt-out person to be forced to learn new rules of engagement - I want a well-rested specialist to be supported in their professional development as cultures change.
Gavin Giovannoni, aka Prof G, asked Grok (X's AI Chatbot): "Why don't people trust the medical profession?"
@grok
Well, it seems like there's a bit of a trust deficit when it comes to the medical profession these days. People are questioning the motives and actions of doctors and medical institutions more than ever before. There are a few reasons for this growing mistrust:
Information Overload: With the rise of the internet and social media, people have access to a vast amount of information about health and medicine. This can be both a blessing and a curse. While it allows people to educate themselves, it also exposes them to conflicting information and misinformation, making it difficult to know what to believe.
Historical Mistrust: There have been instances in the past where medical professionals and institutions have made mistakes or acted unethically. The infamous Tuskegee Syphilis Study, where African American men were intentionally left untreated for syphilis, is a prime example. These historical events have left a lasting impact on public trust.
Conflicting Information: Medical science is constantly evolving, and new research can sometimes contradict previously accepted beliefs. This can lead to confusion and mistrust when people feel that the advice they're receiving is inconsistent or contradictory.
Personal Experiences: Many people have had negative experiences with the healthcare system, such as misdiagnoses, medical errors, or feeling dismissed by their doctors. These personal experiences can contribute to a lack of trust.
Political and Social Factors: In recent years, there has been a rise in political and social movements that question the motives of large institutions, including the medical profession. This can lead to a general distrust of authority figures, including doctors and medical institutions.
Misinformation and Conspiracy Theories: The spread of misinformation and conspiracy theories about medical treatments, vaccines, and the motives of medical professionals can further erode public trust.
Lack of Diversity and Representation: The medical profession has historically been dominated by white, male doctors. This lack of diversity and representation can make it difficult for people from marginalized communities to trust that their needs and perspectives are being taken into account.
Commercialization of Medicine: The increasing commercialization of medicine, with pharmaceutical companies and insurance companies playing a larger role in healthcare, can lead to concerns about conflicts of interest and the prioritization of profit over patient care.
Lack of Transparency: The medical profession can sometimes be opaque, with medical decisions and treatments not always being explained clearly to patients. This lack of transparency can lead to mistrust.
Distrust in Institutions: In general, there has been a decline in trust in institutions, including the government, media, and large corporations. This general distrust can extend to the medical profession as well.
So, there you have it, a laundry list of reasons why people might not trust the medical profession as much as they used to. It's a complex issue, and it's not going to be solved overnight. But hey, at least we have the internet to keep us informed and entertained while we wait for the medical profession to regain our trust.
These bullet points aren’t wrong, but they’re trite and anodyne. They may or may not apply in any particular situation. The value of harnessing massive computing power to query masses of data lies in quickly recognizing patterns that a human would have difficulty discerning, and secondarily in retrieving hard-to-reach data points of interest. This result is the 180°-degree opposite: something a first-year undergraduate ought to be able to pull together in a couple of hours.
Are you asking what drives patients to seek a second, third, fourth opinion?
- Medical gaslighting
- “MS personality” bias
- Wanting to be heard
- Hoping not to be infantilised by the next HCP giving care.
(I have not necessarily experienced the above).
I love MS-selfie but this post today has made me feel really low, especially the comment made by one of the MS Nurses. Fellow HCP here treating patients at their most vulnerable (recently MS focused). I am reading today as both a patient and a caregiver, I’d never advocate for shutting down anything which supports those in need, no matter how much work it generates for consultants and nurses. Why are we in the profession?
The answer is, because of your level of communication people trust you. When they don’t hear from or get ignored by their local provider that reduces trust. The answer isn’t shutting down MS-Selfie but properly resourcing local services. More neurologists trained and deployed, regular reviews and communication at a local level. To say something is too good so shut it down is symptomatic of NHS thinking. The NHS is in need of fundamental reform.
If you can’t see everyone who seeks a second opinion from you, wouldn’t that actually make MS-selfie an even more important resource to have out in the world? Shutting it down would only further limit the good you are able to do for people as an expert in MS.
Well I recently emailed my neurologist- her secretary on the email address at the top of her letters. It’s not something I’ve done before.
I saw her in March but feel like I’ve suddenly got a lot more spasticity and am finding walking harder. I explained and asked about Botox for spasticity.
The secretary responded for my neuro saying she’d said I may have an infection (why isn’t this being investigated??) and yes Botox is known to help spasticity. They even said to see my gp. A friend in Oz who gets Botox for his spasticity myst have checked Google after I’d been emailing him and said I ought to try a certain hospital as they have a spasticity clinic.
It’s the one I go to :(
How loud do I have to shout before getting help?
These are the reasons people with MS might seek second opinions. Because I’ve now lost faith in a neurologist who I thought was doing her best for me.
Of course you’re burnt out - we are too but we can’t always recover.
One conclusion you might draw from these replies, Prof G, is that many neurologists have failed to stay current regarding referrals that are available in their area. It really is not too much to ask for a neurology practice or centre to have this information to hand. We all sympathize up to a point, but this is an area where the behaviour is actually perverse. Not only do these neurologists and their staff let their patients down, they shoot themselves in the foot by not recommending action that might get the patients off their back for a few months.
It seems the old “diagnose and adios” mentality is still present in some quarters. I also feel too many neurologists, trained to laser-focus on the CNS, go into “here be dragons” mode on encountering a neuromuscular junction, whereupon they haul anchor and head back toward their home port. I got dismissive vibes about physiotherapy from neurologist I otherwise respected. But physio has helped me immensely and I feel strongly that it should be incorporated into MS care from the moment of diagnosis.
In the end what’s required of everyone in health care is a bit more humility. Enough, at least, to recognize the differences between science and certainty, accuracy and truth, and narcissism and suffering.
Dear Harriet, that is crazy. You are at the same clinic?? I get Botox for extreme spasticity. It has slowed down dystonias. Otoh, I’ve been blown off about other requests. I still can’t get a physiotherapist because their office is too busy to arrange it. I roll my eyes.
I think you probably have to say 'I'm sorry, but I just can't treat everyone, at least not to a standard I'm comfortable with'. Any one of us could ask for a second opinion with you and then understandably keep coming back, and you just don't have the capacity. Please don't shut down MS Selfie, that isn't the issue as the cat is already out of the bag and you already have a huge number of would-be patients out here! Keep the information coming and we'll do our best to self-manage in line with your guidance.
Indeed. I’ve learned so much from this site, not only from your excellent posts & empathetic replies, but also because you draw our attention to other relevant research and resources. There is so much information out there (legit and not)
I am a scientist and consider myself well-informed about MS, but I’m not an actual medic. When left to my own devices it can feel like looking for a needle in a haystack, as it can be very difficult to wade through vast amounts of content to identify what information is reliable & useful.
We really appreciate your generosity & support. It reminds me of the interactions I had with my PhD supervisor- I know I have the responsibility to do my own work, but your guidance helps point the way.
You are good at what you do that's why everyone would love to have you as their neuro. How many neuros (if you get to see one) and nurses just do box ticking and no tests. How many people with MS have an MRI every year (NICE 'rules'). I've gone over 35yrs with MS and have had 3 MRI's and finally have a neuro who is prepared to let me try a treatment (rebif) and the nurse said he is 'Liberal' and he thinks that everyone should be on treatment and is suprised I was offered anything because of my age. The nurse didn't sound too happy when I asked if I should have tried something years ago. Is there a postcode lottery for DMT's aswell.
I think you may have to question the Neuro that is treating them or in the very least make them aware of the alleged issue and failings. We the patients have every right to express any dissatisfaction with our treatment. We should not just be dismissed but given every right to question the Neuro. I have been left feeling “out of my depth” when speaking to my MS Neuro and even been told to look up Cladribine on Google for more info on it.
There is lots of info online for us MSers so we can have good knowledge on what can and can’t be done so be able to question our illness and treatment with the Neuro.
What also would help is a greater uniformity with all Neuro’s. There is always talk of one more likely to give something than others.
For me since diagnosis I have had to fight my hardest when at my weakest for things
“for me since diagnosis I have had to fight my hardest when at my weakest for things”
100% this!! I’m currently being treated with EMDR to address the prolonged trauma of delayed diagnosis & DMT initiation.
My neuro is excellent but well hidden behind a variety of gatekeepers, so having access to your knowledge is amazing.
I understand the sentiment of the patient completely.
I am outside London but travel to Charring Cross for treatment and consultations.
I have been referred to our local MS nurse team 3 times by my doctor over the last 9 years and the wall of silence is deafening.
The local MS neurologist isn’t one I have any confidence in - when comparing treatments at the MS therapy centre the patients treated by this person are invariably crying and frustrated because they aren’t being offered effective treatments, getting regular MRI’s or feeling ‘heard’ at all just left to waste away.
I have nothing but praise and respect for the team at CC and driving into the city is a small price to pay for a team that care.
That the local MS nurse team continues to ignore my existence despite the 3 referrals means that my opinion of them is somewhere between low and rock bottom and I don’t have a kind word for them at all
Please please keep the MS Selfie. I am in the US so won’t be coming to you for a second opinion. However your writing helps me immensely to try to understand MS, and living with MS. It also gives me areas to discuss with my own MS Neurologist. We too have teams that are very busy and don’t think to review in detail what you write and answer. We need you. Your writing bid incredibly important internationally. I’m amazed you take referrals so quickly and often. That’s unheard of here in US. I don’t have advice on that area I think you need to do what you own values and time allow. However the Selfie is one of the only places I trust to gain knowledge o living with MS, including your honesty on the hard stuff. We need you. Please don’t shut this down, please.
Here in states also. I’ve learned things here no one talks about or knows of. Don’t know where you are, but sane neurologists are hard to find….
I think that ending the Selfie would be a mistake. It obviously limits what you can do for a certain group of patients, but it makes up for that by providing invaluable knowledge to significantly more people. We can then go to our medical professionals with more information and hopefully have a more productive appointment. I won't speak much on doctor burnout, except to say that I'm sure it is a part of the problem. That obviously wouldn't explain them being upset when patients want to get other people involved because things are moving too slowly. MS is so dangerous, there's no time to waste.
There are simply not enough neurologists within the NHS now to adequately deal with the number of people who now have MS! Services are overstretched, underfunded and staff clearly don’t have the time or energy to ‘care’ for and meet their patients needs!
As an MS sufferer I feel isolated, lonely and constantly worried about my MS. I have been with the same neurologist for 18 years now and have seen how things have massively changed over that time. For example I have just had my first MRI scan in 5 years-when I first started having scans they were every six months followed by an appointment with my neurologist. It’s really hard not to feel like nobody cares about you these days but as I said they simply don’t have the time to care!
I understand that there are lots of information sources, but the readers of MS Selfie trust you and appreciate the time that you have spent setting this sub stack up. It would be a shame if you felt pressure to shut it down.
The tone of the MS Selfie is well met by its readers. A lot of HCPs talk down to their patients so we are left looking for the answers to the questions we want answering.
We all know how bonker busy MS teams are. I know that my MS Team have over 800+ patients to care for. It is no wonder that the NHS is busting at the seams if this is only one example of a department at my local and largest hospital within my county.
Long live MS Selfie!
‘One of my MS nurses told me that MS-Selfie had much to answer regarding my out-of-area workload. She has suggested closing it down to stem the referrals and requests for second opinions. Maybe she has a point.’
So her view is that you should hide your light under a bushel because you’re too good and MSr’s want ‘too good ‘
Utterly depressing. Credit to you for creating an environment where she can say such things and be heard , personally I have never in my career been listened to like that and certainly in my ‘career’ as a person with MS for 25 years plus never come even close to being listened to by the English NHS .
Thankfully I have moved to Scotland, the NHS there is funded and managed differently and they seem to get a lot more done . I’ve had a much better experience here .
But to the point - please don’t deprive us of your very accessible information. I have learned far more and self managed much better since finding your resources.
An informed patient should always be the goal. Surely ?
Yes,I agree. This column is helping to create better informed patients who are able to advocate for themselves. How can the answer be to go back to a pre-information age where the doctor played God and the patient was subjugated to just accepting the care plan without question? Surely, sacrificing our lives and health with sub-par treatment cannot ever be the answer to an overburdened health care system?
Hello
I am writing from Switzerland and MS-Selfie has been in all MS-Topics the go-to source.
Even my Neuro reads your posts. Think that you are not only doing a service to UK but to
a lot other users from other countries.
It helped to have a foundation of knowledge and to have an opinion what I like or not.
Thank you very much for your help. I know lots of patients need help and think this is
an act of balance.