Imagine the frustration and inner turmoil of being caught between what you believe is right and what you can do, given the current constraints on the NHS.
I was dismayed recently to be told in MS Clinic that MS DMT was ‘usually’ withdrawn at age mid to late 60’s. Based on what I don’t know. Every request for availability of treatment in the NHS is exhausting. Questions, questions, questions. We are left to our own research, podcasts (no complaints about this one 🤩), options and side effects of various treatments, that’s if they are even available to you. I feel I was treated very late. 7 years post first diagnosed attack (CIS until second relapse) how different my life would have been with earlier intervention.
I’m so sad to read this. Those of us that are service uses can’t fail to see it. GPs retire before they would want to, exhausted Nurses in the surgery. I felt guilty recently when the Nurse Practitioner looked as unwell as myself, different reasons but exhausted. The system is burning HCP out. My sister is an area manager in Private nursing homes. She was recently telling me how long a patient who suffers injuries such as broken leg bones has to wait for an ambulance. Around 18. The homes have invested in a type of blow up mattress to surround the patient and it lifts them of the floor. They now have permission from NHS to put an IV up. These would be care homes as opposed to Nursing where they can do this. My sister looks exhausted from the stress. These residents become extended family. There seems little consideration on the impact on HCP. From the NHS seniority and Politicians. Then the politicians wonder why the numbers of unemployed due to stress is so high. Wes Streeting needs to put his big boy pants on and get his so called changes moving.
Nursing homes had the same limitations years ago when I was working in one. It was very frustrating being an RGN with trauma experience sitting holding a patient's hand, perhaps giving 2 Paracetamol and waiting for an ambulance.
Yes. It’s a worsening problem. They are last in the queue. When my dad was in a nursing home they were able to do more as there were more nurses as opposed to a Residential home. Although they had same long waits. I can’t imagine being left 18 hours with a broken femur, we really do not care for our seniors in the way they deserve.
I can’t compare the “before” and “after” as I wasn’t in the UK ten years ago. We returned to Scotland from Canada (where I was diagnosed) a little over seven years ago.
What I can attest to is that being an MS patient is a full time gig. Between the research, symptom treatments, medical appointments, self help groups and campaigning / advocacy. Seriously a full time gig.
Both in Canada and Scotland, we have socialised healthcare, hybrid models with some private provision being available. Many of the pressures on the systems, demographic and economic are the same.
My experiences of the two systems however are very different, in what for me is one critical aspect. I felt I had much more agency in Canada. I felt respected as an individual, with an intellect, who could make informed decisions for themselves. I often do not feel that way here. And I think the culture of the NHS is to blame. From the “command appearance” appointment letters to the inability to deviate from the “this is our procedure”, I’m left feeling like a problem to be solved….. by someone other than me.
I think is comes back to this notion of “managing a chronic condition” and who should be doing that managing. The mainstream press, certainly thinks it should be the HCP. I suspect many politicians agree. Even in this article, it is suggested to be so. I disagree. Vehemently. I think it should be me, the patient, the one who is experiencing the MS, not just dealing with it 40 or 60 or 80 hours a week but living with it 24/7. With the best will in the world it is just not possible for a HCP, no matter how skilled, dedicated and compassionate, to have more information about me, than me.
What I need from HCPs is diagnosing and treating, sometimes educating. I do not need managing. I have no cognitive impairment. I’ve got this. I even have an advanced degree in management. I understand data, its uses and limitations, how emotion colours it. Seriously, I’ve got this. And since I’ve been approaching the NHS with this expectation, I’ve found my interactions with HCPs to be infinitely more productive.
It is the expectations of the systems and the people in them, that are the problem. If more patients felt empowered, that would free up HCPs to diagnose, treat and educate more patients. Which would benefit all stakeholders in the NHS, patients, HCPs and the taxpaying public alike.
So thank you for being part of that crucial education piece of the puzzle for me. Your writings have helped me understand and articulate my experiences in ways that I feel heard. That is invaluable. Thank you.
I have but a reread is often a good thing. 🤔 Don’t think I commented at the time you asked, but please don’t dumb down the information you are providing. It provides so much for pwMS who wish to take a more active role in their own care. For those, who find it too much, there is nothing to stop them from carrying on as they are.
Great comment. I do have mild cog issues. I do go prepared to all appointments. I write all my concerns down and I hand it to the Neuro or GP to through and address. I find I come away with better clarity.
I’ve gone one further and emailed my questions, concerns and expectations to the MS team about a week ahead of my appointment. Has made my last couple of appointments much more productive.
It’s very distressing to watch this happening to the NHS. It appears to be following in the footsteps of the states. The burnout factor amongst the HCPs, nurses, physicians and ancillary specialists is escalating. (I recently read that plans are being rolled out for a gig worker type of platform for nurses.) Though it seems things can be coordinated for MS, this depends on location and administrative staff is also often burned out and/or angry. Due to that, I’ve found HCPs’ promise to coordinate services are ineffective. We are also losing neurologists; it is not a lucrative practice. In my odd rural yet affluent area, we might find a great MS specialist, and then in no time, they leave. When medicine is privatized, the duty is to the shareholders. The physicians, nurses, ancillary medical specialists (and often facilities) are cut to the bone and they and the patients are dead last. Prof G, this is an extremely important and timely topic. Yes, address it here.
I know this post is about the NHS, but it applies to the US, where I am. Our costly system here does not result in impressive health outcomes across the population, as Dr. G points out. And clearly, based on UK experience with NHS, the answer is not as simple as de-privatization (although that is a necessary first step — the profit motive is anathema to public health).
Personally I have experienced numerous instances of HCPs being over-taxed, burnt-out, arms tied. I am impressed with how they work the system, on the patient’s behalf, to get insurance to pay. For example, I’m getting cognitive rehab right now and the notes say it’s “psychotherapy” — I asked the PhD neuropsychologist why she describes our sessions as psychotherapy and she said insurance won’t pay for cog rehab. That’s an easy fix, but I’ve heard of more arduous workarounds.
I have seen the NHS slide slowly providing insufficient support to patients, whilst HCPs try to cope with an increasing patient need. As a patient, you feel powerless, but grateful for the annual appointment, or MRI exam, the NHS may provide. Not all NHS Trusts are equal and MS services are patchy depending on where you live. It feels unfair, but what can you do?
The NHS needs a reset, but no Government has dared to address this. Let's hope and pray things improve for all patients.
Yes, please continue with these posts. I have personal experience of this, not only in the UK but in SA too. In my area we are now victims of this problem as we have no Neurology Team from the beginning of next year. I class myself fortunate having ppms as I don't need regular visits to the Neurologist but I'm really worried about those who need treatment and who are undiagnosed and may suffer significant disability due to a delay accessing help.
I don't know what I could do to help. Living in the country has its drawbacks.
my experience as a nhs patient has been really dire. Consultant as bemused by the system of communication as I am. I’ve been sent to hospital appointments to find there is no clinic. I’ve been given mri appointments in the evening to find that no report has ever been generated or sent to consultant. There has been an utter lack of continuity of care. Different people ring up but then vanish. I’m utterly exhausted by trying to piece together any information. I also have MS which makes this very difficult!
This just confirms what I have experienced and commented on for some time albeit much better written and explained by Prof G. Indifference is a key word used. I would add to that a lot of box ticking deemed to be treatment done. I still believe MS is a poor relation of illnesses. Postcode lottery for NICE approved treatments is nothing short of a disgrace and immoral. Much much more needs to be done by all to rectify this. Prof G mentions “outdated, very restricted prescribing guidelines, inadequate supportive care and disparities in care” and that is so cruel. I’ve experienced HCP with little care ethos and with little desire to help. It has led to me almost giving up. Those that are there to help and treat you can’t and don’t wish to do it for a myriad reasons. Many of these are reasons for not treating you, reasons for not giving you the treatment that will make one’s “life” worth living rather than reasons to give you the treatment. I have more or less just given up. This is just an existence that I cannot cope with on most days when I know there are treatments out there to give me a life. It’s all ok if one has money if one doesn’t then prepare to suffer. I’m not suggesting that all HCP are like this but many that I have come across are
Yes please. ‘Perverse institutional policies’ always makes me think of the NHS manager’s faux pas where I used to work. Government decreed that nobody has to experience operation cancellation 3 times or more. Hence, all the people on a waiting list whom had been cancelled twice, were invited in on Christmas Day. I suspect the manager had hoped that the patients would refuse the date, resetting their count. None did, and the manager had to hastily arrange ‘Waiting list initiatives’ (extra operation lists) on Christmas Day.
I always thought that it can’t get any worse than Bosnia’s health care system. I am really surprised (in a bad way) that NHS has so many problems. I am used to HCPs being uninterested, overworked and unhelpful. But people in UK should not.
i argued for a year to start kesimpta - local service wanted me to start at bottom of pyramid - i declined - and ectrims paper said it was right to start with kesimpta - why wasnt that publicised more?
this year my annual mri said i am stable - NOT SO - im about as stable as a refugee camp in gaza!
and have started arguing towards btk - i was told i could change next year - not to btk - but i wont give up for myself
id like to contribute more widely but am aware that i dont do well with bad stress.
'my' consultant seems to feel overwhelmed by old fashioned old guard.
i think yr sort of evidence, prof g, needs to get out more widely - not only from you - to more - eg i never found an ms nurse who knows up to date evidence / gps dont get it.
why cant all the ms organisations get together on this? and also lead legal challenge?!
Yes, I'd love to read more articles like this and if there are specific action items MSers can do in the UK to help advocate for changes, I'd love some ideas and momentum from this newsletter on what we can do as patients to advocate for change at the government level.
It's a shame that those of us with the professional capacity to actually do the politics aren't being supported medically to enable any possibility of us actually doing the work.
I was dismayed recently to be told in MS Clinic that MS DMT was ‘usually’ withdrawn at age mid to late 60’s. Based on what I don’t know. Every request for availability of treatment in the NHS is exhausting. Questions, questions, questions. We are left to our own research, podcasts (no complaints about this one 🤩), options and side effects of various treatments, that’s if they are even available to you. I feel I was treated very late. 7 years post first diagnosed attack (CIS until second relapse) how different my life would have been with earlier intervention.
I’m so sad to read this. Those of us that are service uses can’t fail to see it. GPs retire before they would want to, exhausted Nurses in the surgery. I felt guilty recently when the Nurse Practitioner looked as unwell as myself, different reasons but exhausted. The system is burning HCP out. My sister is an area manager in Private nursing homes. She was recently telling me how long a patient who suffers injuries such as broken leg bones has to wait for an ambulance. Around 18. The homes have invested in a type of blow up mattress to surround the patient and it lifts them of the floor. They now have permission from NHS to put an IV up. These would be care homes as opposed to Nursing where they can do this. My sister looks exhausted from the stress. These residents become extended family. There seems little consideration on the impact on HCP. From the NHS seniority and Politicians. Then the politicians wonder why the numbers of unemployed due to stress is so high. Wes Streeting needs to put his big boy pants on and get his so called changes moving.
Nursing homes had the same limitations years ago when I was working in one. It was very frustrating being an RGN with trauma experience sitting holding a patient's hand, perhaps giving 2 Paracetamol and waiting for an ambulance.
But the person whose hand you were holding probably really appreciated it.
Yes. It’s a worsening problem. They are last in the queue. When my dad was in a nursing home they were able to do more as there were more nurses as opposed to a Residential home. Although they had same long waits. I can’t imagine being left 18 hours with a broken femur, we really do not care for our seniors in the way they deserve.
I can’t compare the “before” and “after” as I wasn’t in the UK ten years ago. We returned to Scotland from Canada (where I was diagnosed) a little over seven years ago.
What I can attest to is that being an MS patient is a full time gig. Between the research, symptom treatments, medical appointments, self help groups and campaigning / advocacy. Seriously a full time gig.
Both in Canada and Scotland, we have socialised healthcare, hybrid models with some private provision being available. Many of the pressures on the systems, demographic and economic are the same.
My experiences of the two systems however are very different, in what for me is one critical aspect. I felt I had much more agency in Canada. I felt respected as an individual, with an intellect, who could make informed decisions for themselves. I often do not feel that way here. And I think the culture of the NHS is to blame. From the “command appearance” appointment letters to the inability to deviate from the “this is our procedure”, I’m left feeling like a problem to be solved….. by someone other than me.
I think is comes back to this notion of “managing a chronic condition” and who should be doing that managing. The mainstream press, certainly thinks it should be the HCP. I suspect many politicians agree. Even in this article, it is suggested to be so. I disagree. Vehemently. I think it should be me, the patient, the one who is experiencing the MS, not just dealing with it 40 or 60 or 80 hours a week but living with it 24/7. With the best will in the world it is just not possible for a HCP, no matter how skilled, dedicated and compassionate, to have more information about me, than me.
What I need from HCPs is diagnosing and treating, sometimes educating. I do not need managing. I have no cognitive impairment. I’ve got this. I even have an advanced degree in management. I understand data, its uses and limitations, how emotion colours it. Seriously, I’ve got this. And since I’ve been approaching the NHS with this expectation, I’ve found my interactions with HCPs to be infinitely more productive.
It is the expectations of the systems and the people in them, that are the problem. If more patients felt empowered, that would free up HCPs to diagnose, treat and educate more patients. Which would benefit all stakeholders in the NHS, patients, HCPs and the taxpaying public alike.
So thank you for being part of that crucial education piece of the puzzle for me. Your writings have helped me understand and articulate my experiences in ways that I feel heard. That is invaluable. Thank you.
I assume you have read the following newsletters?
https://gavingiovannoni.substack.com/p/self-agency-in-ms-is-it-realistic
https://gavingiovannoni.substack.com/p/self-management-and-a-rose-tinted?utm_source=publication-search
I have but a reread is often a good thing. 🤔 Don’t think I commented at the time you asked, but please don’t dumb down the information you are providing. It provides so much for pwMS who wish to take a more active role in their own care. For those, who find it too much, there is nothing to stop them from carrying on as they are.
Great comment. I do have mild cog issues. I do go prepared to all appointments. I write all my concerns down and I hand it to the Neuro or GP to through and address. I find I come away with better clarity.
I’ve gone one further and emailed my questions, concerns and expectations to the MS team about a week ahead of my appointment. Has made my last couple of appointments much more productive.
We can’t do this. The MS phone line is poorly manned too.
It’s very distressing to watch this happening to the NHS. It appears to be following in the footsteps of the states. The burnout factor amongst the HCPs, nurses, physicians and ancillary specialists is escalating. (I recently read that plans are being rolled out for a gig worker type of platform for nurses.) Though it seems things can be coordinated for MS, this depends on location and administrative staff is also often burned out and/or angry. Due to that, I’ve found HCPs’ promise to coordinate services are ineffective. We are also losing neurologists; it is not a lucrative practice. In my odd rural yet affluent area, we might find a great MS specialist, and then in no time, they leave. When medicine is privatized, the duty is to the shareholders. The physicians, nurses, ancillary medical specialists (and often facilities) are cut to the bone and they and the patients are dead last. Prof G, this is an extremely important and timely topic. Yes, address it here.
I know this post is about the NHS, but it applies to the US, where I am. Our costly system here does not result in impressive health outcomes across the population, as Dr. G points out. And clearly, based on UK experience with NHS, the answer is not as simple as de-privatization (although that is a necessary first step — the profit motive is anathema to public health).
Personally I have experienced numerous instances of HCPs being over-taxed, burnt-out, arms tied. I am impressed with how they work the system, on the patient’s behalf, to get insurance to pay. For example, I’m getting cognitive rehab right now and the notes say it’s “psychotherapy” — I asked the PhD neuropsychologist why she describes our sessions as psychotherapy and she said insurance won’t pay for cog rehab. That’s an easy fix, but I’ve heard of more arduous workarounds.
Hi Judy, and then there are problems with coding. Resubmit, resubmit….
Thank you, Italien, and all clinicians, for resubmitting, resubmitting!
I have seen the NHS slide slowly providing insufficient support to patients, whilst HCPs try to cope with an increasing patient need. As a patient, you feel powerless, but grateful for the annual appointment, or MRI exam, the NHS may provide. Not all NHS Trusts are equal and MS services are patchy depending on where you live. It feels unfair, but what can you do?
The NHS needs a reset, but no Government has dared to address this. Let's hope and pray things improve for all patients.
Yes, please continue with these posts. I have personal experience of this, not only in the UK but in SA too. In my area we are now victims of this problem as we have no Neurology Team from the beginning of next year. I class myself fortunate having ppms as I don't need regular visits to the Neurologist but I'm really worried about those who need treatment and who are undiagnosed and may suffer significant disability due to a delay accessing help.
I don't know what I could do to help. Living in the country has its drawbacks.
my experience as a nhs patient has been really dire. Consultant as bemused by the system of communication as I am. I’ve been sent to hospital appointments to find there is no clinic. I’ve been given mri appointments in the evening to find that no report has ever been generated or sent to consultant. There has been an utter lack of continuity of care. Different people ring up but then vanish. I’m utterly exhausted by trying to piece together any information. I also have MS which makes this very difficult!
This just confirms what I have experienced and commented on for some time albeit much better written and explained by Prof G. Indifference is a key word used. I would add to that a lot of box ticking deemed to be treatment done. I still believe MS is a poor relation of illnesses. Postcode lottery for NICE approved treatments is nothing short of a disgrace and immoral. Much much more needs to be done by all to rectify this. Prof G mentions “outdated, very restricted prescribing guidelines, inadequate supportive care and disparities in care” and that is so cruel. I’ve experienced HCP with little care ethos and with little desire to help. It has led to me almost giving up. Those that are there to help and treat you can’t and don’t wish to do it for a myriad reasons. Many of these are reasons for not treating you, reasons for not giving you the treatment that will make one’s “life” worth living rather than reasons to give you the treatment. I have more or less just given up. This is just an existence that I cannot cope with on most days when I know there are treatments out there to give me a life. It’s all ok if one has money if one doesn’t then prepare to suffer. I’m not suggesting that all HCP are like this but many that I have come across are
Yes please. ‘Perverse institutional policies’ always makes me think of the NHS manager’s faux pas where I used to work. Government decreed that nobody has to experience operation cancellation 3 times or more. Hence, all the people on a waiting list whom had been cancelled twice, were invited in on Christmas Day. I suspect the manager had hoped that the patients would refuse the date, resetting their count. None did, and the manager had to hastily arrange ‘Waiting list initiatives’ (extra operation lists) on Christmas Day.
I always thought that it can’t get any worse than Bosnia’s health care system. I am really surprised (in a bad way) that NHS has so many problems. I am used to HCPs being uninterested, overworked and unhelpful. But people in UK should not.
i think legal challenge should be considered.
linked to social care being ignored - need proper costeffectiveness review.
we're being ignored - especially those of us older, diagnosed decades ago. with multimorbidity
labour party more interested is cosying up with finance big oil etc https://www.opendemocracy.net/en/labour-given-4m-from-tax-haven-based-hedge-fund-with-shares-in-oil-and-arms/
i argued for a year to start kesimpta - local service wanted me to start at bottom of pyramid - i declined - and ectrims paper said it was right to start with kesimpta - why wasnt that publicised more?
this year my annual mri said i am stable - NOT SO - im about as stable as a refugee camp in gaza!
https://carolinemawer.com/shutting-the-stable-door-after-the-smouldering-horse-has-bolted/
im clearly smouldering!
and have started arguing towards btk - i was told i could change next year - not to btk - but i wont give up for myself
id like to contribute more widely but am aware that i dont do well with bad stress.
'my' consultant seems to feel overwhelmed by old fashioned old guard.
i think yr sort of evidence, prof g, needs to get out more widely - not only from you - to more - eg i never found an ms nurse who knows up to date evidence / gps dont get it.
why cant all the ms organisations get together on this? and also lead legal challenge?!
They are never wrong. What’s the point in asking us how we are when it’s not believed?
Thanks for the links. I’ll look when my head is clearer. I’m thinking Starmer is a Wolf in Blue sheep’s clothing. If you know the saying.
Yes, I'd love to read more articles like this and if there are specific action items MSers can do in the UK to help advocate for changes, I'd love some ideas and momentum from this newsletter on what we can do as patients to advocate for change at the government level.
https://www.theguardian.com/society/2024/nov/24/plan-to-regulate-nhs-bosses-could-see-those-who-silence-whistleblowers-barred-for-life
It's a shame that those of us with the professional capacity to actually do the politics aren't being supported medically to enable any possibility of us actually doing the work.
It’s Hopeless.