I would be interested to hear your opinions about the NHS and your experiences with your healthcare system, and whether or not you are ready to take responsibility for managing your own MS.
You can be the most pro-active, engaged patient in terms of managing your MS, (at the expense of your own capacity to earn a living, already reduced by living with MS), but if departments, MS nurses and clinicians fail to respond entirely, it's not just an insult but it has a derisive impact on your MS itself and outcomes, from both chronic stress to opportunity cost in terms of accessing the provision more usefully elsewhere. Healthcare access already requires constant micromanagement, often for poor outcomes. Too many NHS staff are doing a poor job, yes the pressures are acknowledged, but a poor job served up with poor attitude just complicates things for the patient who then is made to feel like it is all their fault for making the effort in the first place or having any form of expectations of actual healthcare. The burden on the patient is thus too great. Yes to MS self-management, if anything, for the autonomy from being subject to the mismanagement from others. But realistically, in the current climate, the answer is not to shift the burden further onto the patient, until and unless, service provision returns to some form of equitable and efficient standard. I recognise some departments are struggling more than others right now, and echo the other poster below in terms of the comment regarding the postcode lottery. Real time patient feedback mechanisms would be a useful start, so patients don't have to carry the emotional burden of further complication and work of trying to challenge poor treatment, decisions, service failures etc. Does this come into the MS self-management algorithm?
A huge issue with the NHS/NICE is the lack of escalation to higher efficacy DMT unless worsening is observed on a recent MRI, and not even including brain atrophy in that. As far as I understand some of the higher efficacy DMTs don't even cost the NHS more than lower efficacy so it seems risible that pwMS are not offered that choice.
With policy and political pressure. This is why I was involved in the 'MS Brain Health: Time Matters' policy report to try and nudge healthcare decision makers to change things. In our planned update we want to focus on flipping the pyramid.
Living and working in the more rural and remote areas of the North has showed some of the very genuine barriers to using technologies. Many of these areas do not support a fast broadband or mobile phone network. Many people do not bother with smartphones or internet subscriptions. The more the NHS moved towards the use of technologies as the dominant model, the more health disparities there will be between urban and rural. Nationwide there needs to be a genuine thrust towards parity of infrastructure and access to services. If there is no public transport to enable a person to get to the hospital for a scan then the notion of self-management rings hollow. Personally, I think there needs to be a return to local community hospitals with the key factilities to enable monitoring and ongoing support for chronic health conditions. This would build local expertise and solid relationships between the patient and provider. These relationships are key to accurately identifying changes and also knowing the patient.
I spent a couple of years touring around the Republic of Ireland playing music, back in 2010 - 2011. Most of our gigs were in fairly rural places, they pay better apart from anything else.
After the failure of their rural broadband initiative the Irish gave the contract to Hutchison 3 (3 Mobile in the UK) whose solution was to put up a bunch of masts everywhere. It proved very popular although was massively oversubscribed in places like Dublin other cities. However, out in country it was brilliant. No matter where you went, there was 3G coverage. Not fibre optic speeds but enough to do most internet stuff, certainly as good as ADSL used to be.
The very best way to ensure rural and remote areas of the North have a decent connection would be to implement something similar. The masts are fairly inconspicuous and if you keep everyone to 4G speeds it runs easily quick enough for all but the most demanding use. The costs are far lower than providing phone lines or fibre optic to every house and the result is that far more people can stay connected as needed.
I agree with everything Prof G says. We will need a massive cultural and mindset shift but it will hopefully be worth it in the end.
I’m very happy to self manage my MS but am currently struggling to access advice and MRI. We have no MS consultant in our area and two local areas have declined to take me on although one of them has offered support to the MS nurse. If I had RRMS I would be seen but because I’m PPMS and not on DMT, I’m being left to fend for myself. I haven’t had an MRI since 2019.
I do have an excellent neuro physio but I have to pay privately for him.
Hopefully I can get all my thoughts down before my hand collapses—the clonus makes it nearly impossible to type on my phone without it taking hours to finish, and iPhones suck for people with disabilities.
First, I live in the United States and I think our medical system is fundamentally flawed… slanted toward wealth, privilege, youth and limited accessibility. I don’t want to turn this into a political discourse, but we suffer from a lot of pushback from conservatives as well. I an not a neoliberal, but I believe medical care is a basic right that should be afforded to everyone at minimal cost, if not free. Although it’s not exactly the same as other places, the free market forces here in the US suffer from 'maslow’s hammer' mindset (when the only tool you have is a hammer, you tend to treat everything as if it were a nail). So everything is really only about money, instead of being about people and their well-being. There is a huge disparity between the Haves and have Nots. And I definitely agree with Professor G. that without better preventative healthcare we all end up further behind, and the medical system further stressed and strained to the point where everyone is disadvantaged. I believe there is great advantage to universal medical care like in the UK or Canada, or other places with state sponsored medical care. Unfortunately, they still need more thoughtful adjustments to mature and become much more competent, equitable, and timely.
When I was first diagnosed with multiple sclerosis 21 years ago, I was receiving medical care through my HMO insurance, which is similar in a way to your NHS. I had to go through my primary doctor (which would be like a general practitioner) to be able to see specialists, who would have to be picked by the primary doctor (the GP). I hated it because I had very little control over anything, and everything took an inordinate amount of time to get anything done, or to even get seen. The main consideration was usually cost, as I was not making very much money at the time at my job. I was incredibly happy a few years later to be able to afford PPO (preferred provider organization) insurance where I could pick my own doctors, and wait times were substantially reduced in many cases, but not all. And in this second case it’s all about the money, and being able to afford medical care that was more boutique in nature than managed care.
All of the different types of medical care around the world have their own unique advantages and disadvantages, as well as stubbornly intractable problems. But once the world wakes up, grows up, and understands the fundamental importance of medical care and well-being as the cornerstone of a healthy society, and that it should be a basic right of every human being, we will all be better off as we will all be better able to understand that everyone deserves competent and equitable healthcare, with many of the problems being preventable with proactive endeavors. And that everyone should be allowed equal access, not based on personal wealth, or in what neighborhood they reside.
Thank you for making the effort and taking the time to write this. I agree with your conclusion and it is one of the reasons I work in the NHS and why I don't see private patients.
Christopher, I believe you and I have spoken about being on relatively the same timeline in the states insofar as our diagnoses and treatments are concerned. So I won’t repeat. I completely agree with your views. As Prof G says about the privatization of the NHS, most people here have no clue that Medicare is almost completely privatized. None. And if one is on disability, there is no affording that Medicare B plus prescriptions. Then, once one is 65 and forced onto Medicare, that’s it. There IS no other “private option” for anything. I now pay a fee to see a GP, but specialists often decline to see Medicare patients. I’m in area where tourists pay cash, and doctors can “opt out” of accepting Medicare. And Medicare is very sanguine about this: “Look up online to see if your doctor has opted out of Medicare!” (That’s reassuring!) But that “opt out” is, in my opinion, to support the huge push to the egregious Medicare Advantage (terrible program, but great for CEOs and shareholders). “Access” is only getting worse, the “care” is dubious and any ancillary services are on us to pay for. There are some states/cities that have hubs (ex. Seattle) with coordinated services, but there is precious little outside a large city. Here in tourist trap hell, there really are few resources and no GPs, but private boutique practices are abounding. They just won’t be able to find us specialists. We end up trekking to a University town near the coast. Hardly an easy thing to do as MS progresses. There simply should not be big board profit in health care. End of. Older practitioners are leaving in droves. I’m with you on this.🌷
Honestly, asking what I think of the NHS is so gigantic a question it overwhelms me. They subjected me to a lifetime of abuse and gross medical negligence. I had undiagnosed/untreated MS for decades, since I was a child, and undiagnosed autism since I was born. The NHS never did and never would have correctly diagnosed me.
Eventually, I diagnosed myself and went private. I was left severely disabled, with PTSD, and 'significant cerebral atrophy.' Escaping NHS brainwashing was the same as escaping a cult. The idea that everyone in the UK has access to healthcare is a lie. I had absolutely no access to healthcare.
The NHS is designed at every level to do what it did to me. The fact that I'm vulnerable, placed me at far more risk. There was no way for me to self-refer to specialists or for an MRI; over and over I was refused access. The complaints system is a joke and could not possibly care less.
I entirely 'self-managed' my MS for decades, while the NHS tortured me. I now have a DMT and other medications, other than that I still self-manage. It's a daily battle, to do all the right things to take care of myself, while knowing I can never undo the damage the NHS did to me because they viewed me as worthless.
I should always have been able to do my own diagnosing, prescribing, referrals, and order tests. I would have done an infinitely better job than the NHS. I was, sadly, right about everything. Dozens of HCP were wrong, and only cared about money. Believe me, I also find this ridiculous and terrifying. 🤕
The biggest problem I saw while in the UK was that we only treat people with RRMS, which amounts to around 40% of MSers. All other western countries treat around 80-90%, including countries with privatised and obscenely expensive healthcare (like the US, where there are more government and drug company programs to subsidise care for MSers) or countries with a mix of public/private (like Germany/France), or countries which are mostly public (like Canada). It is tragic to me that the UK is still at a 40% treatment rate. For all the admiration that the NHS is "universal access" it's just not true. Persons with PPMS or SPMS do not have access. The triage is just happening at a different point.
Thank you Gavin, excellent post. I strongly disagree about allowing the free market to be involved in the NHS or the private sector which would pick the NHS apart. The private sector is only interested in one thing - profit - not people! I agree that the NHS is excellent at acute healthcare and I have personal experience of this. My sister was diagnosed with a medulla blastoma at age 11, I can’t imagine on top of the emotional turmoil of the diagnosis of having to worry about if treatment could be afforded. She was operated on by one of the world best surgeons. Without the NHS she wouldn’t be here - I will always be eternally grateful.
I do agree that the post acute services need to be addressed. I also agree that people with chronic illnesses could feel more empowered to manage aspects of their condition with specialist oversight. I would be happy to manage my MS and find it particularly frustrating not to be able to refer myself for services or book my own MRI, or see my blood test results.
Jane, I am not sure if you are aware that the NHS is already privatised. Barts Health NHS Trust where I work is run by private companies and almost all services we buy in are from private and state-owned providers. Our IT services are run by Cerner Millennium, a US company, and our data-basing and IT infrastructure by BT. We are even using a private contractor for our MRI scans. Skanska runs our estate, etc.
In general practice a large number of practices are now run by private firms, who employ GPs to work for them.
I am not sure the average British citizen is aware that the NHS is already privatised. What I meant about market forces is for real competition to occur based on non-monopolistic environment. At the moment there is only one healthcare purchaser the government. If we gave you the ability to purchase your own healthcare using your own NHS pounds you would shop around. It is the shopping around that will drive up quality and improve efficiencies.
It's the digitally enabled hyper-neoliberalisation which is underway which is the real issue, as this is based entirely around the profit imperative at the exclusion of all else. With all systems designed to maximise this effect, for example the use of big data to determine access via the insurance industry, it is going to become all about levels of access and the principle of universalism will become an increasingly grey area until it is lost. Facebook siphoning off data from browsing info following use of NHS sites is an example of how this is occurring. https://www.theguardian.com/society/2023/may/27/nhs-data-breach-trusts-shared-patient-details-with-facebook-meta-without-consent
The NHS is a great idea - but it needs more funding to be functionally great. Currently only 40% of MSers are offered treatment because the rest are not deemed cost effective. So it's not like the NHS doesn't deny care, it does. Treatment rates in other Western nations are 80-90%, and in most of those countries there is a mix of public and private. It seems to me that the free market in France and Germany allow for greater access than we have in the UK, but the strong public option in France and Germany keeps the costs from spiralling out of control, like in the US. I think the NHS could maybe get to the point of treating MSers at the same rate as other countries without bringing in the private sector, but it can only happen if substantially more money is put into it. You can't have high access, good care, and cheap care all at the same time. You get to pick 2 of the 3!
I don’t have great faith in our local NHS medical professionals due to many past experiences of being made to feel stupid or being laughed at by GP’s and hospital dr’s alike, so I would absolutely applaud this idea of self management/monitoring/referral if it were to be a reality.
Some other comments on here have pointed out that those of us who are yet to begin our journey of MS suffering, need to know if what we’re doing is beneficial for both present and future. I agree that the healthier pwMS should have access to better education, possibly more tailored to the individual via modern tech, which in turn could ease pressures on the MS teams. I’d benefit from some form of personal guidance or reassurance to know I’m on the right track (I currently have zero) I definitely feel I’ve been on a wing and a prayer since dx.
All the advice and guidance I’ve had is from your MS Selfie newsletters, I’m saddened by needing to look outside of my HCP team to learn anything as they only have time for those who need them the most.
What I find sad is every HCP I’ve met want the very best for my health outcome. I was highly involved with my fathers dementia care and I found this to be the case too. The problems arise with a lack of adequate joined up social and health care. Those of us in the services can see so many gaps, small changes escalate. It seems to be management and lots of changes with consecutive governments, who only think about their time in power, not the long term that create problems. This government have, in my eyes, done more damage than good. . Many charities help plug the gaps too.
I mostly manage my MS. There are not available appointments and scan reporting is minimal and takes months to get results. I’m fortunate to have the ability, many struggle to know where to start.
Many of my family have been NHS nurses, personally I worked voluntarily in counselling for a short while. So as a family we value it but have suffered from its failings too. I think the answer would be huge and need to start in society. Also, we really must address the food poverty. Plus education. We have generations of children addicted to processed foods. Advertisers, marketing , we all play a part. If we don’t take it seriously the younger generations are going to be sick much sooner. Jamie Oliver tried, he got death threats. To me I think it will implode before it improves.
Where MS is concerned the pyramid must be flipped. So new MSers have a better chance of long term work. To feel valued, improves mental health therefore physical health. I think here I’d question the role of Big Pharmas too.
I live in Australia and I have MS. Don't think we are without problems here. It is very bureaucratic and most medical providers have zero knowledge or interest in MS. You may have been told a couple of whoppers or spoke to some very rare individuals.
The pressure on the NHS is mainly caused by an ageing population with often multiple health conditions. My elderly parents (in their 80s) are at the GP surgery / hospital every fortnight - glaucoma (x2), heart disease, high blood pressure, Type 2 diabetes, high cholesterol, polyp removal, blood tests, falls (cuts), skin cancer…. In their area the service (GP and hospital) has been excellent. My parents probably account for 1% of the NHS waiting list. The NHS could never have envisaged this sort of demand when it was created. I’m guessing the average life expectancy in the late 1940s was c.65-70.
I agree about preventative medicine. The main issue is obesity (in relatively young ages) and the conditions which are caused by it - Type 2 diabetes, high blood pressure. But as a society we’re too scared to say anything. Morbidly obese pop stars are lauded for their dancing skills and no one wants to point out the health ramifications for fear of “fat shaming”. Cracking the obesity epidemic will cut the diabetes epidemic (probably consumes 10% of the NHS budget). But GPs and healthcare professionals should be clearer “you need to lose weight or it will seriously affect your health”. I think the NHS needs to get its own house in order. My dad (15 stone) was told to lose some weight by the Diabetes nurse who must have been 18 stone. Practise what you preach.
Regarding MS, the real MS (smouldering MS) needs to be tackled. Addressing this through an anti-viral or a therapy that gets into the CNS and shuts down the innate immune system will pay big dividends. Stopping the climb up the EDSS through increasing disability will mean less clinic appointments, less frequent MRIs etc. Giving patients stability will increase their chances of staying in employment, engaging in social activities and keeping fit and healthy. To date (even with the current DMTs) it’s been a case of managed decline of MS patients eg as more symptoms arrive they are managed with pills (anti-depressants, anti-spasticity) or contraptions (catheter, wheelchair). Stoping the inevitable decline for MS patients would free up a huge amount of resources.
Jul 5, 2023·edited Jul 5, 2023Liked by Gavin Giovannoni
I am in the Canarian Health System. The system is chaotic unless you have the apps and logins in which case the whole thing works a bit like ProfG's proposal.
I have a "health card" issued by the Canarian regional government which gives me a patient number and using that patient number I can login to the system to request GP appointments and a few other bits and pieces of essential healthcare.
Once you have a digital ID issued by the Spanish government you can then access the more confidential parts of the system. This gives access to my health records which I can view on my phone, details of upcoming hospital appointments. So for example because my lymphocytes are quite low anyway and I recently completed the second year of mavenclad pills, my neurologist is insisting on monthly blood tests. My last test was 2 days ago and results were uploaded yesterday and I can see that although my lymphocytes are very low they are the same as they were last month having dropped precipitously since the baseline (prior to the final courses of pills). I can also see that my cholesterol and triglycerides are back down to healthy levels which is encouraging and most likely because I have stopped giving in to my weakness for tasty Spanish sweet pastries and have altered my diet substantially.
The downside to the system is I have no way to contact my team, they never pick up the phone or it's engaged and they don't provide a contact email address so I can't email my specialist, tell him it looks like my lymphocytes are stable, would he like to postpone our appointment next week and simply continue with monthly monitoring - thus saving his time.
Another downside with the Spanish system in general is the cost of medication. Anything prescribed by a GP the subject to 40% co-payment. My monthly bill for medication (about €50) and my monthly social security payments (about €300) are substantial given that I'm currently unable to work or earn any money and living off my savings.
I agree with so much you say here. The first step must be remove private companies from running the NHS, these companies only do it for the profit and the share holders, many of whom are government minister who make the decissions on the running of the NHS. NHS providers is another name for privatisation.
I would love to have more control of my care, not to be swallowed up in pathways and silos that push you in the wrong direction subjecting you to unnecessary tests at cost to the NHS, I personally would do this in conjunction with my GP for certain things. Perhaps it would have stopped me being subjected to 8! urinary retention tests as pushed by the inflexible pathway, and allowed me to say no! its not MS, perhaps then I would have got the correct tests earilier and not be staring down the barrel of a stage 3 serious and aggressive cancer, no one listened no one heard me including my neurology team.
I sadly am guilty of having mutual health insurance, which I used when put on an ENT list at 48 weeks wait and counting ( for a growth seen on MRI and not report for a very long time) by my neurologist who put it as routine referral. The ENT specialist had me on his next, already full, private operating list as it was high risk for cancer, thankfully it was benign. And then again after 30 weeks on a waiting list after an urgent (cancer) referral, thankfully again although disease was detected, no cancer. The appointments office were not giving out urgent cancer appointments at that point (and yet the government blame the patients for coming forward too late). For the cancer that was detected, I was pro-active, and kept pushing for years! but kept being dismissed, put on the wrong pathway and discharged by individuals that should have known better. My point is that if I had more control over my care, more joint care with medics, I would have had less appointments, less money spent, and treated earlier for both MS and cancer.
We do need to realise that the running down of the NHS, the underfunding per head of pop. is a deliberate policy to push people into private healthcare, and until we have a fundemental change to the policies that are designed to undermine the NHS, we will not bring about changes to service delivery. As change takes resources initially, resources that aren't available to the NHS, we won't get a better patient led system.
So yes I totally agree with you however we need people in government that are not invested in private healthcare, and private companies running the NHS making the decisions. Otherwise the patient suffer and will go on suffering as we are currently
I am sorry to hear your story. I have a similar story concerning my melanoma. Even as a Professor of Neurology working in the NHS I had several, potentially important, delays in getting my melanoma diagnosed and treated. The problems are systemic and were due to staffing problems. All okay now, but the anxiety of waiting was very unpleasant.
Thank you, my non cancerous diagnoses were due partly to staff shortages and partly due to a lack of care, or skills. My cancer diagnosis, was due to multiple basic mistakes, poor diagnostic skills, a lack of listening and hearing, arrogance, dismissal of red flag symptoms leading to discharge from the depart rather than urgent referrals and a blinkered attitude that you have MS therefore you must have urinary retention and refusal to look at other organs, other possibilities. I am sure you will see this dismissal of its your MS, when its not, with your own patients. I actually asked x3 about possible cancer, with valid reasoning and was dismissed.
I do feel there is an over reliance on pathways, silos, scanning and computer says "no" and not enough emphasis on medical experience and understanding. Plus accepting if a patient says they are unwell, they usually are. I was actually told "shourly you don't want a hysteroscopy!", the one test I needed, the one test my symptoms were screaming out for, the one test that was done years! too late. I had to fight for so long, get treated so badly before a simple, but necessary investigation was done. And the more I fought, the more I was labelled as a difficult patient before I was seen by certain individuals, who judged me on my notes and not the sick person before them.
Sorry as you know as with life, so in the medical profession you get some great folks and some not so great. This is part of the reason that more patient led care would help, save money, improve quality of life, and save lives.
I am glad you are OK and if you feel able will still be there for your fortunate patients. The stats for me are not good and I would take the matter further if it actually would improve things for others but it won't, it would be too stressful for me.
Take care, be kind to yourself and thank you for keeping on trying to open others eyes, to new thoughts, new ways of looking at patients, you are a great educator, you open minds.
Life, not wife. I still have so much trouble with speech to text on iPhone. And Siri always screws up whatever I say so I have to keep on top of it really well.
You can be the most pro-active, engaged patient in terms of managing your MS, (at the expense of your own capacity to earn a living, already reduced by living with MS), but if departments, MS nurses and clinicians fail to respond entirely, it's not just an insult but it has a derisive impact on your MS itself and outcomes, from both chronic stress to opportunity cost in terms of accessing the provision more usefully elsewhere. Healthcare access already requires constant micromanagement, often for poor outcomes. Too many NHS staff are doing a poor job, yes the pressures are acknowledged, but a poor job served up with poor attitude just complicates things for the patient who then is made to feel like it is all their fault for making the effort in the first place or having any form of expectations of actual healthcare. The burden on the patient is thus too great. Yes to MS self-management, if anything, for the autonomy from being subject to the mismanagement from others. But realistically, in the current climate, the answer is not to shift the burden further onto the patient, until and unless, service provision returns to some form of equitable and efficient standard. I recognise some departments are struggling more than others right now, and echo the other poster below in terms of the comment regarding the postcode lottery. Real time patient feedback mechanisms would be a useful start, so patients don't have to carry the emotional burden of further complication and work of trying to challenge poor treatment, decisions, service failures etc. Does this come into the MS self-management algorithm?
A huge issue with the NHS/NICE is the lack of escalation to higher efficacy DMT unless worsening is observed on a recent MRI, and not even including brain atrophy in that. As far as I understand some of the higher efficacy DMTs don't even cost the NHS more than lower efficacy so it seems risible that pwMS are not offered that choice.
How do we change that??
With policy and political pressure. This is why I was involved in the 'MS Brain Health: Time Matters' policy report to try and nudge healthcare decision makers to change things. In our planned update we want to focus on flipping the pyramid.
Such vital work...let us all know how we can get involved if/when needed or useful
Living and working in the more rural and remote areas of the North has showed some of the very genuine barriers to using technologies. Many of these areas do not support a fast broadband or mobile phone network. Many people do not bother with smartphones or internet subscriptions. The more the NHS moved towards the use of technologies as the dominant model, the more health disparities there will be between urban and rural. Nationwide there needs to be a genuine thrust towards parity of infrastructure and access to services. If there is no public transport to enable a person to get to the hospital for a scan then the notion of self-management rings hollow. Personally, I think there needs to be a return to local community hospitals with the key factilities to enable monitoring and ongoing support for chronic health conditions. This would build local expertise and solid relationships between the patient and provider. These relationships are key to accurately identifying changes and also knowing the patient.
I spent a couple of years touring around the Republic of Ireland playing music, back in 2010 - 2011. Most of our gigs were in fairly rural places, they pay better apart from anything else.
After the failure of their rural broadband initiative the Irish gave the contract to Hutchison 3 (3 Mobile in the UK) whose solution was to put up a bunch of masts everywhere. It proved very popular although was massively oversubscribed in places like Dublin other cities. However, out in country it was brilliant. No matter where you went, there was 3G coverage. Not fibre optic speeds but enough to do most internet stuff, certainly as good as ADSL used to be.
The very best way to ensure rural and remote areas of the North have a decent connection would be to implement something similar. The masts are fairly inconspicuous and if you keep everyone to 4G speeds it runs easily quick enough for all but the most demanding use. The costs are far lower than providing phone lines or fibre optic to every house and the result is that far more people can stay connected as needed.
I agree with everything Prof G says. We will need a massive cultural and mindset shift but it will hopefully be worth it in the end.
I’m very happy to self manage my MS but am currently struggling to access advice and MRI. We have no MS consultant in our area and two local areas have declined to take me on although one of them has offered support to the MS nurse. If I had RRMS I would be seen but because I’m PPMS and not on DMT, I’m being left to fend for myself. I haven’t had an MRI since 2019.
I do have an excellent neuro physio but I have to pay privately for him.
Hopefully I can get all my thoughts down before my hand collapses—the clonus makes it nearly impossible to type on my phone without it taking hours to finish, and iPhones suck for people with disabilities.
First, I live in the United States and I think our medical system is fundamentally flawed… slanted toward wealth, privilege, youth and limited accessibility. I don’t want to turn this into a political discourse, but we suffer from a lot of pushback from conservatives as well. I an not a neoliberal, but I believe medical care is a basic right that should be afforded to everyone at minimal cost, if not free. Although it’s not exactly the same as other places, the free market forces here in the US suffer from 'maslow’s hammer' mindset (when the only tool you have is a hammer, you tend to treat everything as if it were a nail). So everything is really only about money, instead of being about people and their well-being. There is a huge disparity between the Haves and have Nots. And I definitely agree with Professor G. that without better preventative healthcare we all end up further behind, and the medical system further stressed and strained to the point where everyone is disadvantaged. I believe there is great advantage to universal medical care like in the UK or Canada, or other places with state sponsored medical care. Unfortunately, they still need more thoughtful adjustments to mature and become much more competent, equitable, and timely.
When I was first diagnosed with multiple sclerosis 21 years ago, I was receiving medical care through my HMO insurance, which is similar in a way to your NHS. I had to go through my primary doctor (which would be like a general practitioner) to be able to see specialists, who would have to be picked by the primary doctor (the GP). I hated it because I had very little control over anything, and everything took an inordinate amount of time to get anything done, or to even get seen. The main consideration was usually cost, as I was not making very much money at the time at my job. I was incredibly happy a few years later to be able to afford PPO (preferred provider organization) insurance where I could pick my own doctors, and wait times were substantially reduced in many cases, but not all. And in this second case it’s all about the money, and being able to afford medical care that was more boutique in nature than managed care.
All of the different types of medical care around the world have their own unique advantages and disadvantages, as well as stubbornly intractable problems. But once the world wakes up, grows up, and understands the fundamental importance of medical care and well-being as the cornerstone of a healthy society, and that it should be a basic right of every human being, we will all be better off as we will all be better able to understand that everyone deserves competent and equitable healthcare, with many of the problems being preventable with proactive endeavors. And that everyone should be allowed equal access, not based on personal wealth, or in what neighborhood they reside.
Thank you for making the effort and taking the time to write this. I agree with your conclusion and it is one of the reasons I work in the NHS and why I don't see private patients.
Christopher, I believe you and I have spoken about being on relatively the same timeline in the states insofar as our diagnoses and treatments are concerned. So I won’t repeat. I completely agree with your views. As Prof G says about the privatization of the NHS, most people here have no clue that Medicare is almost completely privatized. None. And if one is on disability, there is no affording that Medicare B plus prescriptions. Then, once one is 65 and forced onto Medicare, that’s it. There IS no other “private option” for anything. I now pay a fee to see a GP, but specialists often decline to see Medicare patients. I’m in area where tourists pay cash, and doctors can “opt out” of accepting Medicare. And Medicare is very sanguine about this: “Look up online to see if your doctor has opted out of Medicare!” (That’s reassuring!) But that “opt out” is, in my opinion, to support the huge push to the egregious Medicare Advantage (terrible program, but great for CEOs and shareholders). “Access” is only getting worse, the “care” is dubious and any ancillary services are on us to pay for. There are some states/cities that have hubs (ex. Seattle) with coordinated services, but there is precious little outside a large city. Here in tourist trap hell, there really are few resources and no GPs, but private boutique practices are abounding. They just won’t be able to find us specialists. We end up trekking to a University town near the coast. Hardly an easy thing to do as MS progresses. There simply should not be big board profit in health care. End of. Older practitioners are leaving in droves. I’m with you on this.🌷
Honestly, asking what I think of the NHS is so gigantic a question it overwhelms me. They subjected me to a lifetime of abuse and gross medical negligence. I had undiagnosed/untreated MS for decades, since I was a child, and undiagnosed autism since I was born. The NHS never did and never would have correctly diagnosed me.
Eventually, I diagnosed myself and went private. I was left severely disabled, with PTSD, and 'significant cerebral atrophy.' Escaping NHS brainwashing was the same as escaping a cult. The idea that everyone in the UK has access to healthcare is a lie. I had absolutely no access to healthcare.
The NHS is designed at every level to do what it did to me. The fact that I'm vulnerable, placed me at far more risk. There was no way for me to self-refer to specialists or for an MRI; over and over I was refused access. The complaints system is a joke and could not possibly care less.
I entirely 'self-managed' my MS for decades, while the NHS tortured me. I now have a DMT and other medications, other than that I still self-manage. It's a daily battle, to do all the right things to take care of myself, while knowing I can never undo the damage the NHS did to me because they viewed me as worthless.
I should always have been able to do my own diagnosing, prescribing, referrals, and order tests. I would have done an infinitely better job than the NHS. I was, sadly, right about everything. Dozens of HCP were wrong, and only cared about money. Believe me, I also find this ridiculous and terrifying. 🤕
The biggest problem I saw while in the UK was that we only treat people with RRMS, which amounts to around 40% of MSers. All other western countries treat around 80-90%, including countries with privatised and obscenely expensive healthcare (like the US, where there are more government and drug company programs to subsidise care for MSers) or countries with a mix of public/private (like Germany/France), or countries which are mostly public (like Canada). It is tragic to me that the UK is still at a 40% treatment rate. For all the admiration that the NHS is "universal access" it's just not true. Persons with PPMS or SPMS do not have access. The triage is just happening at a different point.
Thank you Gavin, excellent post. I strongly disagree about allowing the free market to be involved in the NHS or the private sector which would pick the NHS apart. The private sector is only interested in one thing - profit - not people! I agree that the NHS is excellent at acute healthcare and I have personal experience of this. My sister was diagnosed with a medulla blastoma at age 11, I can’t imagine on top of the emotional turmoil of the diagnosis of having to worry about if treatment could be afforded. She was operated on by one of the world best surgeons. Without the NHS she wouldn’t be here - I will always be eternally grateful.
I do agree that the post acute services need to be addressed. I also agree that people with chronic illnesses could feel more empowered to manage aspects of their condition with specialist oversight. I would be happy to manage my MS and find it particularly frustrating not to be able to refer myself for services or book my own MRI, or see my blood test results.
Thank you for all you do!
Happy Birthday NHS 🎊 🎉
Jane, I am not sure if you are aware that the NHS is already privatised. Barts Health NHS Trust where I work is run by private companies and almost all services we buy in are from private and state-owned providers. Our IT services are run by Cerner Millennium, a US company, and our data-basing and IT infrastructure by BT. We are even using a private contractor for our MRI scans. Skanska runs our estate, etc.
In general practice a large number of practices are now run by private firms, who employ GPs to work for them.
I am not sure the average British citizen is aware that the NHS is already privatised. What I meant about market forces is for real competition to occur based on non-monopolistic environment. At the moment there is only one healthcare purchaser the government. If we gave you the ability to purchase your own healthcare using your own NHS pounds you would shop around. It is the shopping around that will drive up quality and improve efficiencies.
People don’t know as it’s has been done slyly and by the back door. Many GP practices are the same.
It's the digitally enabled hyper-neoliberalisation which is underway which is the real issue, as this is based entirely around the profit imperative at the exclusion of all else. With all systems designed to maximise this effect, for example the use of big data to determine access via the insurance industry, it is going to become all about levels of access and the principle of universalism will become an increasingly grey area until it is lost. Facebook siphoning off data from browsing info following use of NHS sites is an example of how this is occurring. https://www.theguardian.com/society/2023/may/27/nhs-data-breach-trusts-shared-patient-details-with-facebook-meta-without-consent
The NHS is a great idea - but it needs more funding to be functionally great. Currently only 40% of MSers are offered treatment because the rest are not deemed cost effective. So it's not like the NHS doesn't deny care, it does. Treatment rates in other Western nations are 80-90%, and in most of those countries there is a mix of public and private. It seems to me that the free market in France and Germany allow for greater access than we have in the UK, but the strong public option in France and Germany keeps the costs from spiralling out of control, like in the US. I think the NHS could maybe get to the point of treating MSers at the same rate as other countries without bringing in the private sector, but it can only happen if substantially more money is put into it. You can't have high access, good care, and cheap care all at the same time. You get to pick 2 of the 3!
I agree in principle with your ideas on self lead care .
I am happy to manage MRI appointments and look after related health queries , foot care , OT equipment, mental health etc .
I would say that the postcode lottery of services needs to end and a truly national service would have to be in place .
A large ‘animal’ to manage but surely worth a try ?
I don’t have great faith in our local NHS medical professionals due to many past experiences of being made to feel stupid or being laughed at by GP’s and hospital dr’s alike, so I would absolutely applaud this idea of self management/monitoring/referral if it were to be a reality.
Some other comments on here have pointed out that those of us who are yet to begin our journey of MS suffering, need to know if what we’re doing is beneficial for both present and future. I agree that the healthier pwMS should have access to better education, possibly more tailored to the individual via modern tech, which in turn could ease pressures on the MS teams. I’d benefit from some form of personal guidance or reassurance to know I’m on the right track (I currently have zero) I definitely feel I’ve been on a wing and a prayer since dx.
All the advice and guidance I’ve had is from your MS Selfie newsletters, I’m saddened by needing to look outside of my HCP team to learn anything as they only have time for those who need them the most.
What I find sad is every HCP I’ve met want the very best for my health outcome. I was highly involved with my fathers dementia care and I found this to be the case too. The problems arise with a lack of adequate joined up social and health care. Those of us in the services can see so many gaps, small changes escalate. It seems to be management and lots of changes with consecutive governments, who only think about their time in power, not the long term that create problems. This government have, in my eyes, done more damage than good. . Many charities help plug the gaps too.
I mostly manage my MS. There are not available appointments and scan reporting is minimal and takes months to get results. I’m fortunate to have the ability, many struggle to know where to start.
Many of my family have been NHS nurses, personally I worked voluntarily in counselling for a short while. So as a family we value it but have suffered from its failings too. I think the answer would be huge and need to start in society. Also, we really must address the food poverty. Plus education. We have generations of children addicted to processed foods. Advertisers, marketing , we all play a part. If we don’t take it seriously the younger generations are going to be sick much sooner. Jamie Oliver tried, he got death threats. To me I think it will implode before it improves.
Where MS is concerned the pyramid must be flipped. So new MSers have a better chance of long term work. To feel valued, improves mental health therefore physical health. I think here I’d question the role of Big Pharmas too.
I live in Australia and I have MS. Don't think we are without problems here. It is very bureaucratic and most medical providers have zero knowledge or interest in MS. You may have been told a couple of whoppers or spoke to some very rare individuals.
The pressure on the NHS is mainly caused by an ageing population with often multiple health conditions. My elderly parents (in their 80s) are at the GP surgery / hospital every fortnight - glaucoma (x2), heart disease, high blood pressure, Type 2 diabetes, high cholesterol, polyp removal, blood tests, falls (cuts), skin cancer…. In their area the service (GP and hospital) has been excellent. My parents probably account for 1% of the NHS waiting list. The NHS could never have envisaged this sort of demand when it was created. I’m guessing the average life expectancy in the late 1940s was c.65-70.
I agree about preventative medicine. The main issue is obesity (in relatively young ages) and the conditions which are caused by it - Type 2 diabetes, high blood pressure. But as a society we’re too scared to say anything. Morbidly obese pop stars are lauded for their dancing skills and no one wants to point out the health ramifications for fear of “fat shaming”. Cracking the obesity epidemic will cut the diabetes epidemic (probably consumes 10% of the NHS budget). But GPs and healthcare professionals should be clearer “you need to lose weight or it will seriously affect your health”. I think the NHS needs to get its own house in order. My dad (15 stone) was told to lose some weight by the Diabetes nurse who must have been 18 stone. Practise what you preach.
Regarding MS, the real MS (smouldering MS) needs to be tackled. Addressing this through an anti-viral or a therapy that gets into the CNS and shuts down the innate immune system will pay big dividends. Stopping the climb up the EDSS through increasing disability will mean less clinic appointments, less frequent MRIs etc. Giving patients stability will increase their chances of staying in employment, engaging in social activities and keeping fit and healthy. To date (even with the current DMTs) it’s been a case of managed decline of MS patients eg as more symptoms arrive they are managed with pills (anti-depressants, anti-spasticity) or contraptions (catheter, wheelchair). Stoping the inevitable decline for MS patients would free up a huge amount of resources.
I am in the Canarian Health System. The system is chaotic unless you have the apps and logins in which case the whole thing works a bit like ProfG's proposal.
I have a "health card" issued by the Canarian regional government which gives me a patient number and using that patient number I can login to the system to request GP appointments and a few other bits and pieces of essential healthcare.
Once you have a digital ID issued by the Spanish government you can then access the more confidential parts of the system. This gives access to my health records which I can view on my phone, details of upcoming hospital appointments. So for example because my lymphocytes are quite low anyway and I recently completed the second year of mavenclad pills, my neurologist is insisting on monthly blood tests. My last test was 2 days ago and results were uploaded yesterday and I can see that although my lymphocytes are very low they are the same as they were last month having dropped precipitously since the baseline (prior to the final courses of pills). I can also see that my cholesterol and triglycerides are back down to healthy levels which is encouraging and most likely because I have stopped giving in to my weakness for tasty Spanish sweet pastries and have altered my diet substantially.
The downside to the system is I have no way to contact my team, they never pick up the phone or it's engaged and they don't provide a contact email address so I can't email my specialist, tell him it looks like my lymphocytes are stable, would he like to postpone our appointment next week and simply continue with monthly monitoring - thus saving his time.
Another downside with the Spanish system in general is the cost of medication. Anything prescribed by a GP the subject to 40% co-payment. My monthly bill for medication (about €50) and my monthly social security payments (about €300) are substantial given that I'm currently unable to work or earn any money and living off my savings.
All systems have their flaws...
I agree with so much you say here. The first step must be remove private companies from running the NHS, these companies only do it for the profit and the share holders, many of whom are government minister who make the decissions on the running of the NHS. NHS providers is another name for privatisation.
I would love to have more control of my care, not to be swallowed up in pathways and silos that push you in the wrong direction subjecting you to unnecessary tests at cost to the NHS, I personally would do this in conjunction with my GP for certain things. Perhaps it would have stopped me being subjected to 8! urinary retention tests as pushed by the inflexible pathway, and allowed me to say no! its not MS, perhaps then I would have got the correct tests earilier and not be staring down the barrel of a stage 3 serious and aggressive cancer, no one listened no one heard me including my neurology team.
I sadly am guilty of having mutual health insurance, which I used when put on an ENT list at 48 weeks wait and counting ( for a growth seen on MRI and not report for a very long time) by my neurologist who put it as routine referral. The ENT specialist had me on his next, already full, private operating list as it was high risk for cancer, thankfully it was benign. And then again after 30 weeks on a waiting list after an urgent (cancer) referral, thankfully again although disease was detected, no cancer. The appointments office were not giving out urgent cancer appointments at that point (and yet the government blame the patients for coming forward too late). For the cancer that was detected, I was pro-active, and kept pushing for years! but kept being dismissed, put on the wrong pathway and discharged by individuals that should have known better. My point is that if I had more control over my care, more joint care with medics, I would have had less appointments, less money spent, and treated earlier for both MS and cancer.
We do need to realise that the running down of the NHS, the underfunding per head of pop. is a deliberate policy to push people into private healthcare, and until we have a fundemental change to the policies that are designed to undermine the NHS, we will not bring about changes to service delivery. As change takes resources initially, resources that aren't available to the NHS, we won't get a better patient led system.
So yes I totally agree with you however we need people in government that are not invested in private healthcare, and private companies running the NHS making the decisions. Otherwise the patient suffer and will go on suffering as we are currently
I am sorry to hear your story. I have a similar story concerning my melanoma. Even as a Professor of Neurology working in the NHS I had several, potentially important, delays in getting my melanoma diagnosed and treated. The problems are systemic and were due to staffing problems. All okay now, but the anxiety of waiting was very unpleasant.
Thank you, my non cancerous diagnoses were due partly to staff shortages and partly due to a lack of care, or skills. My cancer diagnosis, was due to multiple basic mistakes, poor diagnostic skills, a lack of listening and hearing, arrogance, dismissal of red flag symptoms leading to discharge from the depart rather than urgent referrals and a blinkered attitude that you have MS therefore you must have urinary retention and refusal to look at other organs, other possibilities. I am sure you will see this dismissal of its your MS, when its not, with your own patients. I actually asked x3 about possible cancer, with valid reasoning and was dismissed.
I do feel there is an over reliance on pathways, silos, scanning and computer says "no" and not enough emphasis on medical experience and understanding. Plus accepting if a patient says they are unwell, they usually are. I was actually told "shourly you don't want a hysteroscopy!", the one test I needed, the one test my symptoms were screaming out for, the one test that was done years! too late. I had to fight for so long, get treated so badly before a simple, but necessary investigation was done. And the more I fought, the more I was labelled as a difficult patient before I was seen by certain individuals, who judged me on my notes and not the sick person before them.
Sorry as you know as with life, so in the medical profession you get some great folks and some not so great. This is part of the reason that more patient led care would help, save money, improve quality of life, and save lives.
I am glad you are OK and if you feel able will still be there for your fortunate patients. The stats for me are not good and I would take the matter further if it actually would improve things for others but it won't, it would be too stressful for me.
Take care, be kind to yourself and thank you for keeping on trying to open others eyes, to new thoughts, new ways of looking at patients, you are a great educator, you open minds.
A terrible story. An example of medical Gaslighting.
Life, not wife. I still have so much trouble with speech to text on iPhone. And Siri always screws up whatever I say so I have to keep on top of it really well.