I would suggest you document the specific issues you have had with your MS service and then meet with them to discuss the problems one by one. If they refuse to meet with you, I suggest you ......
I can see both points of view. As someone with diagnosed MS for over 30 years, I am still amazed by how varied the approach of medical professionals to MS is. I am also amazed how old and clearly poorly thought-out arguments continue to persist.
There will still be people with MS being told their problems are "all in your head" despite that concept being completely dispensed with years ago in the WHO ICD-11 standard interpretation of disorders.
I have lost count of how many medications have had a turn at being the 'gold standard' only for time to see them being rubbished by the same people who were promoting them a few years earlier.
I'm yet to see an MS team outside the setting of an acute attack. My guess is most people only have the team they put together themselves. Like most people, I see a neurologist for 20 minutes once a year, and he does the same tests that were being done when I was first diagnosed in 1994. If I mention the EBV concept, he doesn't leap out of his chair and say "Yes, isn't it interesting". Instead, he steers the conversation away or terminates the appointment.
Physios are worse. They can't grasp the difference between an upper motor neuron injury and a peripheral injury, so they suggest the wrong exercise and make stupid comments like 'use it or lose it".
I see where you're coming from but that is just your perspective. From what I have experienced, there is very little difference between the approach taken to PwMS now compared to the mid 1990s. There might be a plethora of new drugs but there is no change in attitudes that I can detect.
As with all professions, there are good and bad. It’s no secret these days that not all doctors are vocationally motivated by interest, purpose and meaning, for some ego, status and pay have been primary in determining their career. Some act with decency, honesty and integrity; others harm and lie with impunity. Amongst my own experiences, I have encountered doctors across this spectrum. I recognise the grievance at the heart of the complainers message - a costly lack of attention, care and compassion. It is also the case that my first neurologist was a truly exceptional humanitarian. The truth is that there can be huge discrepancy in quality of care doctor to doctor - it’s a matter of luck (and location) how you land, with huge ramifications for your health outcomes. Systemic failings are driving the problem and so to is medical culture - tribalism, an unwillingness to be open, transparent and accountable and a lack of humility. Highly negative patient experiences are no longer an anomaly - and this is the biggest risk to the NHS.
Having just moved and therefore my healthcare having moved as well I have had to become my own project manager -no ifs, no buts. Unless I’d been proactive and not taken no for an answer very little would have happened re the transfer of care ( and I have to transfer 3 chronic conditions). However I fundamentally disagree with the ‘complainer’ - I’m sorry that they have received this level of care ( or lack of it) but at all stages I have come up against laborious administration and inadequate technology - the staff have been excellent and equally frustrated .Prof G’s article is excellent and from my own experience all I can say is that with the NHS as it is - you have to take responsibility for managing the admin of your healthcare as much as you can -blaming everything and everyone else wastes energy we don’t have.
“When it comes to pwMS with symptomatic problems, it requires connecting with other teams, such as those in continence, rehabilitation, neuropsychology, pain, spasticity, neuro-psychiatry, speech and language, dietetics, tissue viability, ophthalmology, palliative care, endocrinology, podiatry, social care, and social prescribing teams, among others. It takes far more than a neurologist to manage a pwMS; it takes a responsive healthcare system, social care system, and society to manage someone with a disabling disease such as MS. So, when someone with MS criticises their neurologist and MS team, it helps to consider all these factors and try to highlight where the problems lie concerning their care and lived experiences.”
This is exactly why healthcare needs to breakout out of it’s siloed past and truly embrace patient centric care.
While I understand and agree with your response I think one needs to realize that unfortunately there ARE charlatans and bad doctors out there and it's entirely possible the commentator experienced one of those. I think while MS specialists now understand the urgency of treat early treat hard (which gives reason to diagnose early as well) this message has not yet made it to all internists, ER doctors, or even community neurologists so there is still some education to be done. The diagnostic process is too slow and filled with gender and age bias and the result can impact outcomes for life so there is urgency to do this education. For example, in my own case, I should have been diagnosed 5 years prior. The only reason I was not is due to
1) bias - the community neurologist saw a 30-something young busy and tired mother and despite being faced with an unusually MS-educated and proactive patient this neurologist jumped to believing the issue was psychological vs neurological and let bias make conclusions rather than scientific facts
2) this neurologist had clearly had not made the connection that as soon as you see a patient, in particular female, in their 20s-40s, with a FAMILY HISTORY OF MS, neurological symptoms, and an inconclusive MRI a few years prior, your immediate instinct should be to get another MRI immediately (inexcusable if you ask me but it is the reality of most PwMS I have met). This is unacceptable. This combination of facts should have screamed rule out MS first.
Unfortunately by the time a person is diagnosed with MS and makes their way to a specialist they have likely encountered several negative experiences which has caused them long-term damage that could and should have been prevented and therefore their comments and experience with the MS specialist is going to be negatively colored by their prior poor experiences.
My experience as well. You are “probable” was the 90s after peripheral neuropathy was diagnosed. My professional colleagues were aghast. Peripheral neuropathy from what? The physicians that I saw weren’t charlatans. But they were definitely uninterested. Young woman working and raising a family. It must be stress….
I read this with a sibling in mind. She had an episode of numbness /tingling start in one hand a few months ago. In terms of the ‘dominoes of causation ’model that your ‘preventing ms’ article referenced she unfortunately hits all of the risk factors indicated. Smokes, over weight had glandular fever as adolescent etc … and she is my sister.
My own MS was misdiagnosed for 6yr as carpal tunnel, and whilst she may well have that (as is being suggested) and not MS (gp assures her it couldn’t be that🤔) it saddens me that knowing what we know, she is not being referred on for any further exploration or investigation.
Even by a metric of looking for ‘most likely cause’ to save NHS money, I do think she warrants more in terms of assessment. However, she like many ppl with MS that I meet are not great self advocates, i despair sometimes at the conversations I have with people who seem so willing and ready to do as they’re told by their ‘team’, without question, the team who have budgets and various agendas competing for their time and energy. Personally any meaningful support I e had for my MS has been self sought and self funded. It’s sad that this is the case, even to complain requires a baseline level of resilience that isn’t always there or that has been dissipated
I am a PwMS and I work in the NHS. I am so sorry you've had this experience. Having had the same complaint from a neighbour an hour ago, I will respond to this complainant as I did with her. We had 14 years of chronic underfunding, including Brexit when some of our most experienced staff left, and a Global pandemic when the UK suffered one of the highest deaths per 100,000 population in the world. If you read or watch the predominantly right wing media in the UK, none of these factors are reported together. As a result our team had 25% of the staff needed for 2 years. I agree it's a disgrace. I would suggest you follow Professor Giovannoni 's advice and also request an Integrated Care Services meeting, where all the relevant medical teams meet with you. This can often unblock previous barriers. Good luck 🤞🤞
The deaths comparison is bunkum. Other nations did not include deaths with covid, unlike the UK they only counted deaths from covid. Like for like the UK trounced the likes of Germany. If I recall correctly the Germans even excluded deaths in care homes.
What also has got over looked is that some people died because of Covid not with. Not getting timely treatment n Covid for other disease such as Sepsis due to very long ambulance waits, then waking for a negative Covid test slowed potential treatment being delivered in a timely manner. My family experienced this. It was no one’s fault. Rather circumstances and over whelmed services . Life is not perfect and often harsh.
I lost my sister. It was harsh. There’s no where to put your frustration and anger. I still feel shocked at times. My dad died with Covid 3 weeks before my sister in a nursing home. It was grim but I knew every HCP did as much as they could. They can’t work miracles. I hope you are doing ok.
I’m sorry for both of your losses. It wasn’t much different here in the states. One lifelong friend of mine who died of Covid had the cause listed as COPD. Now recovering from one of the new variants, I am exhausted. Just grateful I didn’t have to be hospitalized.
We will never know the true figures. And if you weren’t impacted personally those folk seem to have forgotten the horror. Only the medics HCP and those that paid the price with loss seem to remember, it changed our family in many ways. None of us blamed hospital staff. If it wasn’t for them caring and working goodness knows what would happen. As far as this post about HCP being Charlatons that is way to over the top. If I were the person who posted this complained I’d go to our PALS and my MP. We must have a right to complain but you don’t get anywhere by name calling a whole group of professionals.
Yes, I think neurologists can have pretty poor ‘bedside manners’. I really don’t know why a that is but, and this is certainly a sweeping statement , some seem to have lost general level empathy. It’s too easy to say that they are under pressure and don’t have time. I fear it’s something to do with culture amongst consultant level staff and I know from my wife ( ex Nurse) that this same culture can have an effect on nurses etc who work work with such consultants- a sort of ‘it’s not my job’ type outlook plus inter- consultant and negative rivalries. Having said that - I am talking about ‘some’ not all!
I’ve never really understood why the diagnosis process takes so long ‘because we have to rule out other possible conditions first’. Why not look first for ‘worst possible case’ conditions first rather than focus first on conditions which, from the point of view of the patient are going to be of lesser and possibly little concern. There is little or no sense in first looking for lesser conditions!
I’ve seen similar comments on e.g the MS Trust Facebook page. General rants about charlatans, fob you off with nonsense , they do ‘****’ all etc etc. I tend to think that such comments/rants are made by people who are scared , confused and lost as a result of having or possibly having what is a very scary condition I.e MS and facing a life of general destruction’ of their abilities. They just want to cry out and someone to listen to them . The above comments were aimed at MS Nurses who probably get the worst of them.
The question about excluding life-threatening conditions is that it needs to be done urgently, i.e. the same day or week. With MS, an outpatient diagnostic work-up takes weeks to months. For patients admitted to a hospital, it takes days due to the need to exclude urgent, treatable conditions, for example, spinal cord compression.
I agree with much of what you say, however I have been on the wrong end of very poor care from other departments who blinkered by my MS and gaslighted me partly due to my MS. From the pwMS my thoughts are that managers (bean counters) are looking at cost and not value. They have strict pathways in silos that don't allow the HCP to do what is best for the patient. They also don't allow the HCP to develop their set skills fully as there are too many pathways to follow, with too many irrelevant tests needing done, too much computer "says no" before a patient can get treated or diagnosed. From my expansive experiences with the NHS my thoughts are the deliberate underfunding has been done to push people into the private healthcare system, to allow private companies (who take profits from the NHS contracts, and therefore money out of the NHS, even more underfunding) access to the NHS, that private companies cherry pick these least expensive work, leaving the complex work and more expensive work to the remnants of the public run NHS. That it is a deliberate policy to get the front line HCP and the patients at loggerheads as this opens the way for the dissatisfaction to lead to the full privatisation of the NHS. In my experience we need to allow the HCP more discretion in testing, investigation, giving a diagnosis and treatment, and there must be access to pier to pier referral. And the patient should be allowed to self refer for services, plus the patient should be able to swap HCP if they don't suit each other, and the patient must have more influence in getting access to tests and investigation. The current situation and set up causes conflict, causes dissatisfaction on both sides, and causes the late diagnosis and late treatment of patients. Then there are the healthboards (bean counters) that delay or restrict access to medications that have been approved by NICE or SIGN, on the flase economy of saving money in the short term. Also the "ward" or department culture set by the head of the unit (one person. one clinician) does have a major effect on the way patients are treated overall. We all lose in the current system, it creates conflict (deliberately) and poorer care.
I was actually guilty of this for some time until I was able to take some time to think about it carefully. I had accused my neurologist of not helping me with my symptoms because I thought they were all related to the multiple sclerosis Itself, and the weird part which is also unfortunate Is that they are all related to the multiple sclerosis! But I wasn't aware or keen enough to understand that they needed to be treated by different disciplines. it took a while to understand fully and grow--mostly growth as a human being, and learning deference to a smarter authority as well as some humility. There are some people to be blamed for wasting precious time, that actually required casting a wider net as well as turning the finger of blame inward in many cases, if I was being completely honest. Thank you for writing this post Professor G. I was wondering myself what type of reply to type when someone sounded obviously agitated and upset. And I think your post is very diplomatic and eloquent, without being snide or parochial.
Hi Christopher! Yes, it is all related to our MS, but some of us certainly have problems being referred for any effective auxiliary services here, including other disciplines. The urologist I was referred to in the burg was very kind and knowledgeable, however, their physicians were spread so thin, it was impossible to see him. They now have AI phones only on a do-loop. No person available. End of. I’m convinced it’s to have you call 911 if you can’t wait for up to 48 hours for a return call! And I’m neurologist-less. Again. They all leave for the coast!
In 2015, UK spending on healthcare was 8% of GDP. It is now c. 11.5%.
And the UK GDP has grown 13.5% over this period (accounting for the cumulative effect of compoundinng annual rates). So it's a much bigger slice of a bigger cake.
We saw net immigration of 3.6m or 5.3% during this period. So much less than growth in NHS spending.
Now I have received a much better service from the NHS back in 2015. I think many of us have. The issue is not a lack of money, it is unionisation. Which politician has the balls to DOGE the NHS?
Mind those words: the NHS will slowly but surely turn into a British version of Obamacare unless it is deeply restructured (ie DOGEd to use a buzword). We have tough decisions to make and none are easy.
I’ve been watching the NHS with interest from over here. It’s one of our states’ biggest players in healthcare that wants in on privatization. Correct me if I’m wrong, but I have read that Blair (New Britain..) is spearheading the privatization, or is directly involved.
Not wishing to be unfair to the original post but surely individuals have to take ownership of their own medical journeys.
I struggled to get a diagnosis but had to battle past my GP, finally was given a frighteningly cold dx from a neurologist lacking any empathy but it's my life not theirs.
I have a strategy whereby I try to befriend everyone connected to my care from the phlebotomist to my MS neurologist and generally I think this benefits the quality of my care.
Everyone in the NHS is under unfair pressure, everyone in any role has to get through their working days. Be nice l, smile and make it work for you. Challenge if necessary but know that most people are doing their best most days.
May I refer to the question another lady commented on "With the N. H. S." As it is? My question is why is it as it is? These people are Medics who trained extremely hard to earn their Degrees what about the Hippocratic Oath they took to care for those unwell! Since Covid it seems most ( not all) have deemed to not care enough. Do we therefore complain about said Medics or should we look beyond this When the NHS started there were less Doctos but I feel from what I was told by my parents better care is this because people are living longer which in itself maybe because we are being treated better or because things have massively improved regarding Scanning etc So I feel the Government should try harder to help fix the NHS and I do understand how hard your jobs are but if the Government won't help save the actual service that we all rely on I really think it's pointless you striking if the bins don't get emptied or the shops close we could manage but maybe someone somewhere could lose a life of you Strike so maybe make this point!!!
My Dad always used to say something along the lines of: "The NHS was set up as a Health Service not a have every possible treatment / surgery you can possibly think of for free service. It's no wonder it is struggling to keep up with all these new and rapidly evolving scenarios. There needs to be a new way of funding it or it needs to confine it's attention to basic health." He died in 2001 and I think the situation with the NHS being expected to fund more and more and more has just snowballed since then. My concern is that as fast as diseases are eradicated there always seems to be something worse round the corner. We now treat pneumonia, once called the old person's friend when they died from it, with antibiotics but to what benefit? In some cases to carry on living a difficult life full of pain or confusion or whatever! Every patients situation and how they feel about it is unique
Prof G, that was a considerate, empathic response to a terribly frustrated patient. What I’d like to get across here is it’s not just the NHS. In the states we do not have teams, unless you are fortunate enough to be near a hospital that has a comprehensive program. I was fortunate enough 20 years ago to have access to such a hospital in the Pac northwest, however, it was quite a chore to get there, since I lived in a suburb, which depended upon travel by ferry. I understand the comprehensive program they had there has been to disbanded since the hospital was bought out. (Another issue here.) If you don’t have access to coordinated care, imo you’re in the weeds. I am astonished that people think that neurological care and services are better in the states. They aren’t. It may depend on geography, your age and lots of private money, but I understand fewer doctors are specializing in neurology and it shows. I empathize with everyone’s frustrations. I’ve just become too long in the tooth to become enraged anymore.
I can see both points of view. As someone with diagnosed MS for over 30 years, I am still amazed by how varied the approach of medical professionals to MS is. I am also amazed how old and clearly poorly thought-out arguments continue to persist.
There will still be people with MS being told their problems are "all in your head" despite that concept being completely dispensed with years ago in the WHO ICD-11 standard interpretation of disorders.
I have lost count of how many medications have had a turn at being the 'gold standard' only for time to see them being rubbished by the same people who were promoting them a few years earlier.
I'm yet to see an MS team outside the setting of an acute attack. My guess is most people only have the team they put together themselves. Like most people, I see a neurologist for 20 minutes once a year, and he does the same tests that were being done when I was first diagnosed in 1994. If I mention the EBV concept, he doesn't leap out of his chair and say "Yes, isn't it interesting". Instead, he steers the conversation away or terminates the appointment.
Physios are worse. They can't grasp the difference between an upper motor neuron injury and a peripheral injury, so they suggest the wrong exercise and make stupid comments like 'use it or lose it".
I see where you're coming from but that is just your perspective. From what I have experienced, there is very little difference between the approach taken to PwMS now compared to the mid 1990s. There might be a plethora of new drugs but there is no change in attitudes that I can detect.
As with all professions, there are good and bad. It’s no secret these days that not all doctors are vocationally motivated by interest, purpose and meaning, for some ego, status and pay have been primary in determining their career. Some act with decency, honesty and integrity; others harm and lie with impunity. Amongst my own experiences, I have encountered doctors across this spectrum. I recognise the grievance at the heart of the complainers message - a costly lack of attention, care and compassion. It is also the case that my first neurologist was a truly exceptional humanitarian. The truth is that there can be huge discrepancy in quality of care doctor to doctor - it’s a matter of luck (and location) how you land, with huge ramifications for your health outcomes. Systemic failings are driving the problem and so to is medical culture - tribalism, an unwillingness to be open, transparent and accountable and a lack of humility. Highly negative patient experiences are no longer an anomaly - and this is the biggest risk to the NHS.
Having just moved and therefore my healthcare having moved as well I have had to become my own project manager -no ifs, no buts. Unless I’d been proactive and not taken no for an answer very little would have happened re the transfer of care ( and I have to transfer 3 chronic conditions). However I fundamentally disagree with the ‘complainer’ - I’m sorry that they have received this level of care ( or lack of it) but at all stages I have come up against laborious administration and inadequate technology - the staff have been excellent and equally frustrated .Prof G’s article is excellent and from my own experience all I can say is that with the NHS as it is - you have to take responsibility for managing the admin of your healthcare as much as you can -blaming everything and everyone else wastes energy we don’t have.
“When it comes to pwMS with symptomatic problems, it requires connecting with other teams, such as those in continence, rehabilitation, neuropsychology, pain, spasticity, neuro-psychiatry, speech and language, dietetics, tissue viability, ophthalmology, palliative care, endocrinology, podiatry, social care, and social prescribing teams, among others. It takes far more than a neurologist to manage a pwMS; it takes a responsive healthcare system, social care system, and society to manage someone with a disabling disease such as MS. So, when someone with MS criticises their neurologist and MS team, it helps to consider all these factors and try to highlight where the problems lie concerning their care and lived experiences.”
This is exactly why healthcare needs to breakout out of it’s siloed past and truly embrace patient centric care.
I found out yesterday by accident, when reading my medical notes, that I no longer have rrms...I now have secondary progressive.
While I understand and agree with your response I think one needs to realize that unfortunately there ARE charlatans and bad doctors out there and it's entirely possible the commentator experienced one of those. I think while MS specialists now understand the urgency of treat early treat hard (which gives reason to diagnose early as well) this message has not yet made it to all internists, ER doctors, or even community neurologists so there is still some education to be done. The diagnostic process is too slow and filled with gender and age bias and the result can impact outcomes for life so there is urgency to do this education. For example, in my own case, I should have been diagnosed 5 years prior. The only reason I was not is due to
1) bias - the community neurologist saw a 30-something young busy and tired mother and despite being faced with an unusually MS-educated and proactive patient this neurologist jumped to believing the issue was psychological vs neurological and let bias make conclusions rather than scientific facts
2) this neurologist had clearly had not made the connection that as soon as you see a patient, in particular female, in their 20s-40s, with a FAMILY HISTORY OF MS, neurological symptoms, and an inconclusive MRI a few years prior, your immediate instinct should be to get another MRI immediately (inexcusable if you ask me but it is the reality of most PwMS I have met). This is unacceptable. This combination of facts should have screamed rule out MS first.
Unfortunately by the time a person is diagnosed with MS and makes their way to a specialist they have likely encountered several negative experiences which has caused them long-term damage that could and should have been prevented and therefore their comments and experience with the MS specialist is going to be negatively colored by their prior poor experiences.
My experience as well. You are “probable” was the 90s after peripheral neuropathy was diagnosed. My professional colleagues were aghast. Peripheral neuropathy from what? The physicians that I saw weren’t charlatans. But they were definitely uninterested. Young woman working and raising a family. It must be stress….
I read this with a sibling in mind. She had an episode of numbness /tingling start in one hand a few months ago. In terms of the ‘dominoes of causation ’model that your ‘preventing ms’ article referenced she unfortunately hits all of the risk factors indicated. Smokes, over weight had glandular fever as adolescent etc … and she is my sister.
My own MS was misdiagnosed for 6yr as carpal tunnel, and whilst she may well have that (as is being suggested) and not MS (gp assures her it couldn’t be that🤔) it saddens me that knowing what we know, she is not being referred on for any further exploration or investigation.
Even by a metric of looking for ‘most likely cause’ to save NHS money, I do think she warrants more in terms of assessment. However, she like many ppl with MS that I meet are not great self advocates, i despair sometimes at the conversations I have with people who seem so willing and ready to do as they’re told by their ‘team’, without question, the team who have budgets and various agendas competing for their time and energy. Personally any meaningful support I e had for my MS has been self sought and self funded. It’s sad that this is the case, even to complain requires a baseline level of resilience that isn’t always there or that has been dissipated
Yes! Resilience I have lost!!
I am a PwMS and I work in the NHS. I am so sorry you've had this experience. Having had the same complaint from a neighbour an hour ago, I will respond to this complainant as I did with her. We had 14 years of chronic underfunding, including Brexit when some of our most experienced staff left, and a Global pandemic when the UK suffered one of the highest deaths per 100,000 population in the world. If you read or watch the predominantly right wing media in the UK, none of these factors are reported together. As a result our team had 25% of the staff needed for 2 years. I agree it's a disgrace. I would suggest you follow Professor Giovannoni 's advice and also request an Integrated Care Services meeting, where all the relevant medical teams meet with you. This can often unblock previous barriers. Good luck 🤞🤞
The deaths comparison is bunkum. Other nations did not include deaths with covid, unlike the UK they only counted deaths from covid. Like for like the UK trounced the likes of Germany. If I recall correctly the Germans even excluded deaths in care homes.
What also has got over looked is that some people died because of Covid not with. Not getting timely treatment n Covid for other disease such as Sepsis due to very long ambulance waits, then waking for a negative Covid test slowed potential treatment being delivered in a timely manner. My family experienced this. It was no one’s fault. Rather circumstances and over whelmed services . Life is not perfect and often harsh.
Indeed, my father died from cancer due to the NHS shutting down during Covid.
I lost my sister. It was harsh. There’s no where to put your frustration and anger. I still feel shocked at times. My dad died with Covid 3 weeks before my sister in a nursing home. It was grim but I knew every HCP did as much as they could. They can’t work miracles. I hope you are doing ok.
I’m sorry for both of your losses. It wasn’t much different here in the states. One lifelong friend of mine who died of Covid had the cause listed as COPD. Now recovering from one of the new variants, I am exhausted. Just grateful I didn’t have to be hospitalized.
We will never know the true figures. And if you weren’t impacted personally those folk seem to have forgotten the horror. Only the medics HCP and those that paid the price with loss seem to remember, it changed our family in many ways. None of us blamed hospital staff. If it wasn’t for them caring and working goodness knows what would happen. As far as this post about HCP being Charlatons that is way to over the top. If I were the person who posted this complained I’d go to our PALS and my MP. We must have a right to complain but you don’t get anywhere by name calling a whole group of professionals.
A few slightly unrelated and sweeping comments.
Yes, I think neurologists can have pretty poor ‘bedside manners’. I really don’t know why a that is but, and this is certainly a sweeping statement , some seem to have lost general level empathy. It’s too easy to say that they are under pressure and don’t have time. I fear it’s something to do with culture amongst consultant level staff and I know from my wife ( ex Nurse) that this same culture can have an effect on nurses etc who work work with such consultants- a sort of ‘it’s not my job’ type outlook plus inter- consultant and negative rivalries. Having said that - I am talking about ‘some’ not all!
I’ve never really understood why the diagnosis process takes so long ‘because we have to rule out other possible conditions first’. Why not look first for ‘worst possible case’ conditions first rather than focus first on conditions which, from the point of view of the patient are going to be of lesser and possibly little concern. There is little or no sense in first looking for lesser conditions!
I’ve seen similar comments on e.g the MS Trust Facebook page. General rants about charlatans, fob you off with nonsense , they do ‘****’ all etc etc. I tend to think that such comments/rants are made by people who are scared , confused and lost as a result of having or possibly having what is a very scary condition I.e MS and facing a life of general destruction’ of their abilities. They just want to cry out and someone to listen to them . The above comments were aimed at MS Nurses who probably get the worst of them.
The question about excluding life-threatening conditions is that it needs to be done urgently, i.e. the same day or week. With MS, an outpatient diagnostic work-up takes weeks to months. For patients admitted to a hospital, it takes days due to the need to exclude urgent, treatable conditions, for example, spinal cord compression.
I agree with much of what you say, however I have been on the wrong end of very poor care from other departments who blinkered by my MS and gaslighted me partly due to my MS. From the pwMS my thoughts are that managers (bean counters) are looking at cost and not value. They have strict pathways in silos that don't allow the HCP to do what is best for the patient. They also don't allow the HCP to develop their set skills fully as there are too many pathways to follow, with too many irrelevant tests needing done, too much computer "says no" before a patient can get treated or diagnosed. From my expansive experiences with the NHS my thoughts are the deliberate underfunding has been done to push people into the private healthcare system, to allow private companies (who take profits from the NHS contracts, and therefore money out of the NHS, even more underfunding) access to the NHS, that private companies cherry pick these least expensive work, leaving the complex work and more expensive work to the remnants of the public run NHS. That it is a deliberate policy to get the front line HCP and the patients at loggerheads as this opens the way for the dissatisfaction to lead to the full privatisation of the NHS. In my experience we need to allow the HCP more discretion in testing, investigation, giving a diagnosis and treatment, and there must be access to pier to pier referral. And the patient should be allowed to self refer for services, plus the patient should be able to swap HCP if they don't suit each other, and the patient must have more influence in getting access to tests and investigation. The current situation and set up causes conflict, causes dissatisfaction on both sides, and causes the late diagnosis and late treatment of patients. Then there are the healthboards (bean counters) that delay or restrict access to medications that have been approved by NICE or SIGN, on the flase economy of saving money in the short term. Also the "ward" or department culture set by the head of the unit (one person. one clinician) does have a major effect on the way patients are treated overall. We all lose in the current system, it creates conflict (deliberately) and poorer care.
Hear, hear!
I was actually guilty of this for some time until I was able to take some time to think about it carefully. I had accused my neurologist of not helping me with my symptoms because I thought they were all related to the multiple sclerosis Itself, and the weird part which is also unfortunate Is that they are all related to the multiple sclerosis! But I wasn't aware or keen enough to understand that they needed to be treated by different disciplines. it took a while to understand fully and grow--mostly growth as a human being, and learning deference to a smarter authority as well as some humility. There are some people to be blamed for wasting precious time, that actually required casting a wider net as well as turning the finger of blame inward in many cases, if I was being completely honest. Thank you for writing this post Professor G. I was wondering myself what type of reply to type when someone sounded obviously agitated and upset. And I think your post is very diplomatic and eloquent, without being snide or parochial.
Hi Christopher! Yes, it is all related to our MS, but some of us certainly have problems being referred for any effective auxiliary services here, including other disciplines. The urologist I was referred to in the burg was very kind and knowledgeable, however, their physicians were spread so thin, it was impossible to see him. They now have AI phones only on a do-loop. No person available. End of. I’m convinced it’s to have you call 911 if you can’t wait for up to 48 hours for a return call! And I’m neurologist-less. Again. They all leave for the coast!
I'm grateful every day for my neurologist, who is amazing. I know I'm lucky.
Wasn’t that a Jagger song? “Yes, I’m lucky””…Just some kidding…glad you have a good one!!
In 2015, UK spending on healthcare was 8% of GDP. It is now c. 11.5%.
And the UK GDP has grown 13.5% over this period (accounting for the cumulative effect of compoundinng annual rates). So it's a much bigger slice of a bigger cake.
We saw net immigration of 3.6m or 5.3% during this period. So much less than growth in NHS spending.
Now I have received a much better service from the NHS back in 2015. I think many of us have. The issue is not a lack of money, it is unionisation. Which politician has the balls to DOGE the NHS?
Tony, you definitely don’t want DOGE. It’s a meat axe.
Mind those words: the NHS will slowly but surely turn into a British version of Obamacare unless it is deeply restructured (ie DOGEd to use a buzword). We have tough decisions to make and none are easy.
I’ve been watching the NHS with interest from over here. It’s one of our states’ biggest players in healthcare that wants in on privatization. Correct me if I’m wrong, but I have read that Blair (New Britain..) is spearheading the privatization, or is directly involved.
Not wishing to be unfair to the original post but surely individuals have to take ownership of their own medical journeys.
I struggled to get a diagnosis but had to battle past my GP, finally was given a frighteningly cold dx from a neurologist lacking any empathy but it's my life not theirs.
I have a strategy whereby I try to befriend everyone connected to my care from the phlebotomist to my MS neurologist and generally I think this benefits the quality of my care.
Everyone in the NHS is under unfair pressure, everyone in any role has to get through their working days. Be nice l, smile and make it work for you. Challenge if necessary but know that most people are doing their best most days.
Good luck
May I refer to the question another lady commented on "With the N. H. S." As it is? My question is why is it as it is? These people are Medics who trained extremely hard to earn their Degrees what about the Hippocratic Oath they took to care for those unwell! Since Covid it seems most ( not all) have deemed to not care enough. Do we therefore complain about said Medics or should we look beyond this When the NHS started there were less Doctos but I feel from what I was told by my parents better care is this because people are living longer which in itself maybe because we are being treated better or because things have massively improved regarding Scanning etc So I feel the Government should try harder to help fix the NHS and I do understand how hard your jobs are but if the Government won't help save the actual service that we all rely on I really think it's pointless you striking if the bins don't get emptied or the shops close we could manage but maybe someone somewhere could lose a life of you Strike so maybe make this point!!!
My Dad always used to say something along the lines of: "The NHS was set up as a Health Service not a have every possible treatment / surgery you can possibly think of for free service. It's no wonder it is struggling to keep up with all these new and rapidly evolving scenarios. There needs to be a new way of funding it or it needs to confine it's attention to basic health." He died in 2001 and I think the situation with the NHS being expected to fund more and more and more has just snowballed since then. My concern is that as fast as diseases are eradicated there always seems to be something worse round the corner. We now treat pneumonia, once called the old person's friend when they died from it, with antibiotics but to what benefit? In some cases to carry on living a difficult life full of pain or confusion or whatever! Every patients situation and how they feel about it is unique
Prof G, that was a considerate, empathic response to a terribly frustrated patient. What I’d like to get across here is it’s not just the NHS. In the states we do not have teams, unless you are fortunate enough to be near a hospital that has a comprehensive program. I was fortunate enough 20 years ago to have access to such a hospital in the Pac northwest, however, it was quite a chore to get there, since I lived in a suburb, which depended upon travel by ferry. I understand the comprehensive program they had there has been to disbanded since the hospital was bought out. (Another issue here.) If you don’t have access to coordinated care, imo you’re in the weeds. I am astonished that people think that neurological care and services are better in the states. They aren’t. It may depend on geography, your age and lots of private money, but I understand fewer doctors are specializing in neurology and it shows. I empathize with everyone’s frustrations. I’ve just become too long in the tooth to become enraged anymore.