Again, again highlight another very concerning but common issue - the ability of MS teams to deliver care consistent with reasonable expectation and the pressure put on those teams.
There are many issues but I wish to emphasise 3:
1. Many people living with MS (PLwMS) do not fully know what they are entitled to, or what constitutes “best” or even reasonable practice. This is not a criticism of PLwMS. MS care is very complex but we need to be able to issue people with a clear document of reasonable expectations they should have of their service and Trust;
2. The complaints of PLwMS are subject to lip service internal local procedures. As such there is a divide and conquer culture and no cohesive process against which concerns are combined in a way that influences care at at national level.
3. Individual trusts appear to be weak patient advocates when it comes to fighting for resources. It seems Trusts would rather suppress individual who exposure Trust weaknesses, rather than be honest, candid and escalate the issue to NHSE or the DOH who are ultimately responsible for trusts delivering good care. For example, Trusts should support their clinical team by refusing to prescribe NICE approved drugs until NHSE/DOH provide appropriate resources.
I think it is time for PLwMS and MS teams to unite and fight. Otherwise…….
I went to a lecture tonite by Jonathan Van Tam (JVT) about his role as chief medical officer during the height of the COVID pandemic.
JVT highlighted the importance of maintaining honesty, integrity, values, morals, principles, and personal ethics. these were general comments for all of us but within the context of clinicians and scientists.
I, and others, think the honesty is the UK MS care is generally poor, given our understanding from the science And what we know can be done.
This is the MS care paradox TMS4ALL has tried to highlight - every year there is more we can do for PLwMS, but every year there is less we actually do for PLwMS due to limitations in care delivery.
Lots of us have tried, and largely failed, to advance care locally. There is a need to influence, effectively, at a national level
This requires us, as an MS community, to unite and fight for national level level. Many healthy brain years are being lost.
This leaves me with feelings of absolute despair for the patient(s) and med staff involved … also for the NHS trusts trying to pick up the pieces. Do we need a template outlining the situation that we can use in communicating the case to Parliament? I don’t know the way to best navigate this profile raising exercise.
There goes a tale… but if you have PPMS there’s a slim chance you’ll fit the criteria for the only available medication. We all need to unite and address this as it’s the most common neurological disease in the country yet other illnesses are getting even more press attention. Not to say they don’t need addressing too…
Really if you’ve PPMS( and I dare say SPMS) , you feel abandoned by the system ( but a huge thank you to Prof Hobart from me!!) it’s a lonely fight…..
If you think how much the NHS must spend on self inflicted injury or illness, it is rather hard on the nerves 😉
Professor, dear Gavin one more time thank you very much for your time, efforts and expertise! @Bron, I totally agree, well said! @Jeremy, it's such a pity regarding at the state of NHS MScare! I'm living in Belgium, PwMS (aggressively/with many fluctuations SPMS right now) for more than twenty years, today the local pharmacist will deliver the first (0,25mg) box of Mayzent Siponimod, as it's approved by national regulator! Wish me luck and I am confident that it is a right way. 🤞 Olga Bobrovnikova pianist teacher and author
We patients must also try to grasp the enormity of the problems. What can WE do?
I have been ‘lucky’ enough to get Lemtrada after 2 less effective DMTs - the timing & funding were right.
I fear for patients coming through the system now. The annual face to face with a neurologist seems gone & possibly even with MS nurses (in favour or phone reviews). Referrals across specialisms are excruciatingly slow as every part of the NHS suffers.
I fear for our Neurologists & MS teams who may just leave for countries with more optimism & funding. I fear for the NHS
What I don’t know is what to do about it - apart from telling everyone I meet they must not vote Conservative (and yes, I’m aware that other parties have no answers either - but Tories don’t make even a pretence about flogging off what they can to private practice).
MS charities seem to make periodic efforts to lobby MPs but to no avail that I can see
Patients taking to Law for clinical negligence findings & damages may succeed sometimes (if they can show on balance of probabilities that delayed DMTs ‘caused’ disabilities - not easy to prove). But that’s no answer & takes more £ out of the NHS
Tell us what patients can do at Trust levels to help?
Thank you for telling people to go to the press, their MP, and a solicitor. If they can, they could also move to the catchment area of a good MS Team. That's what I did, when I finally got an MS diagnosis; I'm under Royal London.
But the people who most need this help will be the least able to access it. The NHS denied me healthcare for socioeconomic reasons for decades. I couldn't access any other resources as without a diagnosis I couldn't prove anything. It was a Catch-22. There was nothing I could do until I had enough money to get broadband to diagnose myself and a credit card to pay private doctors.
I admire the patient you wrote about so much, for getting doctors to admit they were wrong and apologise 🤕
I know there are lots of concerns re this patient and similar, and how to encourage effective raising of the issue. TMS4All are working with others to create a patient expectation framework which will include a feedback element. How to feedback on good and less good treatment experiences. Once this is ready it will be shared far and wide and can be adopted by other countries and health economies.
Thank you prof G for your newsletter. I believe many patients are treated by their doctors like they would be mentaly ill. We are talking about the access to drugs, fine.There is one more problem- correct diagnosis. I have a feeling that many neurologist forget that sth like non active PP MS exists. Unfortunatelly many neurologist claim that if you do not have clear lesons in MRI it means that you dont have MS. In that situation patients are alone. This is a tragedy.
Adding my small voice to those of Bron and Lemtrada Lady. Gavin, Jeremy, tell us what we can do? Has this lady been to her MP? Do MS Society know? How many other NHS Trusts in same situation with SPMS siponimod? Or PPMS ocrelizumab? Is it known? If this were cancer would be in newspapers and BBC national news.
It IS still very much a postcode lottery. I had to travel (from the North to London!) for a second opinion in order to to access effective treatment and the frustrating thing is that the damage caused meanwhile isn't reversible.
As someone with PPMS/NEIDA, I'd been told that I was ineligible for NHS treatment with the-only-game-in-town, ocrelizumab. Turns out that NICE imposed the limitation on NEIDA cases, empowering the NHS Trusts to "watchfully wait" their patients with impunity. Having done some networking with contacts in USA reveals that it's quite normal there to treat PPMS/NEIDA patients because "a lot of them aren't showing any evident activity" - obviously! They prescribe according to the symptoms and I'm sure MS Neurologists in UK with they could do the same.
One wonders how many more "pockets of exclusion" exist? As for me, I'm trying to get on a clinical trial, wherein the drug co picks up the tab; not the NHS. Definitely worth others taking a look down this avenue.
Gavin,
Again, again highlight another very concerning but common issue - the ability of MS teams to deliver care consistent with reasonable expectation and the pressure put on those teams.
There are many issues but I wish to emphasise 3:
1. Many people living with MS (PLwMS) do not fully know what they are entitled to, or what constitutes “best” or even reasonable practice. This is not a criticism of PLwMS. MS care is very complex but we need to be able to issue people with a clear document of reasonable expectations they should have of their service and Trust;
2. The complaints of PLwMS are subject to lip service internal local procedures. As such there is a divide and conquer culture and no cohesive process against which concerns are combined in a way that influences care at at national level.
3. Individual trusts appear to be weak patient advocates when it comes to fighting for resources. It seems Trusts would rather suppress individual who exposure Trust weaknesses, rather than be honest, candid and escalate the issue to NHSE or the DOH who are ultimately responsible for trusts delivering good care. For example, Trusts should support their clinical team by refusing to prescribe NICE approved drugs until NHSE/DOH provide appropriate resources.
I think it is time for PLwMS and MS teams to unite and fight. Otherwise…….
Jeremy Hobart
Plymouth MS team
Gavin,
I went to a lecture tonite by Jonathan Van Tam (JVT) about his role as chief medical officer during the height of the COVID pandemic.
JVT highlighted the importance of maintaining honesty, integrity, values, morals, principles, and personal ethics. these were general comments for all of us but within the context of clinicians and scientists.
I, and others, think the honesty is the UK MS care is generally poor, given our understanding from the science And what we know can be done.
This is the MS care paradox TMS4ALL has tried to highlight - every year there is more we can do for PLwMS, but every year there is less we actually do for PLwMS due to limitations in care delivery.
Lots of us have tried, and largely failed, to advance care locally. There is a need to influence, effectively, at a national level
This requires us, as an MS community, to unite and fight for national level level. Many healthy brain years are being lost.
At TMS4ALL we are trying to do that
This leaves me with feelings of absolute despair for the patient(s) and med staff involved … also for the NHS trusts trying to pick up the pieces. Do we need a template outlining the situation that we can use in communicating the case to Parliament? I don’t know the way to best navigate this profile raising exercise.
There goes a tale… but if you have PPMS there’s a slim chance you’ll fit the criteria for the only available medication. We all need to unite and address this as it’s the most common neurological disease in the country yet other illnesses are getting even more press attention. Not to say they don’t need addressing too…
Really if you’ve PPMS( and I dare say SPMS) , you feel abandoned by the system ( but a huge thank you to Prof Hobart from me!!) it’s a lonely fight…..
If you think how much the NHS must spend on self inflicted injury or illness, it is rather hard on the nerves 😉
What else can we do to change this?
Professor, dear Gavin one more time thank you very much for your time, efforts and expertise! @Bron, I totally agree, well said! @Jeremy, it's such a pity regarding at the state of NHS MScare! I'm living in Belgium, PwMS (aggressively/with many fluctuations SPMS right now) for more than twenty years, today the local pharmacist will deliver the first (0,25mg) box of Mayzent Siponimod, as it's approved by national regulator! Wish me luck and I am confident that it is a right way. 🤞 Olga Bobrovnikova pianist teacher and author
We patients must also try to grasp the enormity of the problems. What can WE do?
I have been ‘lucky’ enough to get Lemtrada after 2 less effective DMTs - the timing & funding were right.
I fear for patients coming through the system now. The annual face to face with a neurologist seems gone & possibly even with MS nurses (in favour or phone reviews). Referrals across specialisms are excruciatingly slow as every part of the NHS suffers.
I fear for our Neurologists & MS teams who may just leave for countries with more optimism & funding. I fear for the NHS
What I don’t know is what to do about it - apart from telling everyone I meet they must not vote Conservative (and yes, I’m aware that other parties have no answers either - but Tories don’t make even a pretence about flogging off what they can to private practice).
MS charities seem to make periodic efforts to lobby MPs but to no avail that I can see
Patients taking to Law for clinical negligence findings & damages may succeed sometimes (if they can show on balance of probabilities that delayed DMTs ‘caused’ disabilities - not easy to prove). But that’s no answer & takes more £ out of the NHS
Tell us what patients can do at Trust levels to help?
Thank you for telling people to go to the press, their MP, and a solicitor. If they can, they could also move to the catchment area of a good MS Team. That's what I did, when I finally got an MS diagnosis; I'm under Royal London.
But the people who most need this help will be the least able to access it. The NHS denied me healthcare for socioeconomic reasons for decades. I couldn't access any other resources as without a diagnosis I couldn't prove anything. It was a Catch-22. There was nothing I could do until I had enough money to get broadband to diagnose myself and a credit card to pay private doctors.
I admire the patient you wrote about so much, for getting doctors to admit they were wrong and apologise 🤕
Dear all
I know there are lots of concerns re this patient and similar, and how to encourage effective raising of the issue. TMS4All are working with others to create a patient expectation framework which will include a feedback element. How to feedback on good and less good treatment experiences. Once this is ready it will be shared far and wide and can be adopted by other countries and health economies.
Thank you prof G for your newsletter. I believe many patients are treated by their doctors like they would be mentaly ill. We are talking about the access to drugs, fine.There is one more problem- correct diagnosis. I have a feeling that many neurologist forget that sth like non active PP MS exists. Unfortunatelly many neurologist claim that if you do not have clear lesons in MRI it means that you dont have MS. In that situation patients are alone. This is a tragedy.
Shocked. I had no idea.
Adding my small voice to those of Bron and Lemtrada Lady. Gavin, Jeremy, tell us what we can do? Has this lady been to her MP? Do MS Society know? How many other NHS Trusts in same situation with SPMS siponimod? Or PPMS ocrelizumab? Is it known? If this were cancer would be in newspapers and BBC national news.
Caroline Wyatt can you help?
Absolutely, it is! …. got me to thinking, how many MPs suffer from MS?
What about using endoxan
It IS still very much a postcode lottery. I had to travel (from the North to London!) for a second opinion in order to to access effective treatment and the frustrating thing is that the damage caused meanwhile isn't reversible.
Sh1t! Didn't realise this was so widespread.
As someone with PPMS/NEIDA, I'd been told that I was ineligible for NHS treatment with the-only-game-in-town, ocrelizumab. Turns out that NICE imposed the limitation on NEIDA cases, empowering the NHS Trusts to "watchfully wait" their patients with impunity. Having done some networking with contacts in USA reveals that it's quite normal there to treat PPMS/NEIDA patients because "a lot of them aren't showing any evident activity" - obviously! They prescribe according to the symptoms and I'm sure MS Neurologists in UK with they could do the same.
One wonders how many more "pockets of exclusion" exist? As for me, I'm trying to get on a clinical trial, wherein the drug co picks up the tab; not the NHS. Definitely worth others taking a look down this avenue.
Graeme