I suspect a few of these patients on the waiting will turn out to have MS, and waiting 9, 12 or 18 months for a diagnosis will come at a cost. MS waits for nobody.
I am in the brink of giving up and waiting for this bitch of a disease to overcome me. I’m divorced and live alone and it’s just too much for me. No siblings family or anything. All I want is a bit of help. Famprya would be a life saviour but it’s easier to get an audience with the Pope. Someone please help me. What do I have to do?? PPMS is literally killing me. I was stuck lying on the floor for 90 minutes the other day alone in my house when my limbs gave up. I thought it was the end
I have PPMS no dmt for me. I have just had to pay private to see my nhs neurologist to get fampyra prescription.
I have done the free trial and it’s game changer for me.
I will now have to continue paying for this as well as my private physio privately .
I am currently employed by the nhs as specialist senior nurse! It’s crazy if I don’t have this drug and physio the other option is retire me off with ill health pension.
I have paid my seen my nhs neurologist but in his private clinic. He has prescribed this for me and I have had to pay to see him and get the prescription.
Thank you for your honesty. It is clear that if you are newly diagnosed with MS, you should beg, steal & borrow to move to an area where high efficacy DMTs are prescribed. It is depressing to think of all those people who will have several major relapses whilst waiting to see a neurologist and access a decent DMT.
Many of .us MSers who were dumped or pushed out by employers have given hours of voluntary work over the years. Some of us working alongside others with the same qualifications for nothing. This may give the MSer a chance to work without pressure on those more difficult days. It is also due to the way the benefit system works for some people.
Personally I no longer do voluntary work. Balancing my health seems to be a full time job.
How insulting that your employers consider HCP are shirking. Do the management who put this 15 minute rule also stick to it ?? I doubt it. It seems we’ve got more of the same politically with the new “in crowd “ 🙄
You could have written this very thing about Canada. Waiting lists are unbelievable and I know someone who has been waiting 18 months so far to see a neurologist at the same MS Centre I go to. I have to travel 105km one way to get there. Health care resources are not finite and are in a shambles in Canada and any province who dares mention a hybrid of private and public services gets yelled down out of fear that the public system would just be abandoned altogether and only the whose with $ will get healthcare. Every provider I see is over worked and in my opinion, under compensated. I don't know what the answer is. Signed the Queen of the run-on sentences.
I feel as somebody with nearly 30 years of experience of living with MS that the amount of knowledge and data that could be gleaned from speaking and using the massive resource of people with MS would be invaluable to the Future! Comparing our biomarkers with a healthy member of the population is this a thing why is it that when people with MS improve with plasma exchange what's the difference between my plasma and that of a healthy person? Why are people who are pregnant so much better during this time what hormone is a neuro protector? These are just a few of my questions I would love to be a guinea pig and improve not just my life but the future of people with MS I had ebv when I was 18 is this still present in my body causing the inflammation?
We moved house last year and although people berated us for choosing to find a house that meant I didn’t have to move to a non-central belt postcode, it has meant a more or less seamless transition in treatment. The 3mth blood tests have been dropped but that is all. Compare that with the Borders where even getting steroids when you have an optic neuritis flare is nigh on impossible then I’m happy we made that choice.
I worked for a while in the POP department of a big hospital in Newcastle and the amount of money wasted i.e. £25 for a simple 500ml plastic measuring jug when there was a pound shop across the road is mind-boggling. I would suggest that it is management that needs restructuring and replacing so as to free up hard-working staff from the ridiculous bureaucracy that ties hands.
My wife was diagnosed with MS 5 years ago. She is British but we live in Australia. After receiving alemtuzumab, we were lucky enough to have our first child (in our 40s no less). We have recently been discussing moving back to the UK so our daughter can spend some time with her grandparents. After reading this post, I really don’t think this is an option. Access to healthcare is vitally important, along with the ability to access a second cycle of alemtuzumab if required.
The Issues affecting the NHS also impact pwMS who do not live in the UK.
As far as I can tell Australia is the best place in the world to have MS if you have to have it. Biggest range of dmt options which are substantially subsidised and neurologists able and prepared to prescribe them. I know there are issues in the healthcare and disability systems there but it seems a lot better than most. So fight to keep it that way!
Yes, so I’ve come to understand. My wife’s experience has certainly been different from those commenting in this thread. Time from index event to diagnosis was approximately 4 weeks. Time from diagnosis to treatment, 6 weeks. That delay was largely due obtaining JC status (lab is located overseas). Thankfully, she hasn’t had to deal with the National Disability Insurance Scheme as she isn’t at a point where she requires any type of support. We are hoping it stays that way. That isn’t unrealistic given her treatment.
I'm in London. I had two relapses initially then was discharged from Moorfields, the hospital I first presented at. My third relapse was not eye related so I went to my GP. "NHS Choices" limited my hospital options to hospitals that didn't treat MS at the time. I "chose" (bit of a Hobson's Choice wasn't it) Homerton over the North Mid. By the time I was seen at a hospital that could diagnose and treat me (Queen Square) it was eight months and two more relapses later. I count myself so lucky that none of my five relapses was catastrophic. So even living in central/inner London postcodes (NW1 then N15) didn't help me in the postcode lottery.
Thats the problem, everything is not a cost centre, and that including human beings, patients! By making you account for every minute it disincentivises HCP,s which in the medium to long term is counterproductive. Politics over the last 45 years has been all about cost and not value. One of the worst terms I keep hearing is that I am economically inactive! I am not, I am disabled due to MS and have been unwell for years due to silo based NHS care. I have had "the kitchen sink thrown at me" for cancer treatment. I did not choose this life, I did not choose to have a low income, its not me but please shift the narrative, stop guilt tripping people over a silo based, postcode lottery healthcare system that limits them
When diagnosed with MS, I had a neurologist that couldn't prescribe any DMTs (2013) and when I relapsed, again, I was dropped by my neurologist and left with no care! Then when I finally saw a new neurologist, she asked me which DMT I was on ( obviously hadn't read my notes) and finally started me on one. Now with my cancer diagnosis I am not on any DMTs. However over the last decade I have been labelled economically inactive. We need to stop seeing the cost of everything and the value of nothing
Please don't shoot the messenger. I am just telling you what the reality is on the ground. I had elaborate ways to bypass the out-of-area rejection rule, which is why my MS practice was so distorted. Sadly these loopholes in referral vetting have been closed.
Not shooting the messenger, agreeing with your views. Scotland has a far more ridged system than England. Its almost impossible to change consultants within your own health board, never mind swap hospitals or health boards. Even when you know the consultant is holding back your healthcare, or worse (in my case) labelling you and not investigating your ill health, hence my late cancer diagnosis (I needed fresh eyes, and not ones that were blinkered) The reality on the ground for HCP must be frustrating, it certainly is for the end user, the patient.
Its a term that has been used for a number of years by our last UK government to demonise those that are unable to work due to ill health, its insulting. I am hoping that our new government will drop the label. I for one don't choose to be on a low income, I would prefer to be well enough to work. No one would choose to have had the health challenges I have
I completely understand. No one chooses this, and the exhaustion. I’m sorry about your cancer as well; there can be more than one dragon with long term effects. Moreover, it’s often the luck of the draw, imo. For some reason, the there is a cohort of people that think chronic illness is a walk in the park, in one’s head etc. I have lost both friends and family members over the many years. We don’t need it from the govt, but there it is. Feel as well as you can. 💕
On the other side of the world, I was diagnosed within a week and on treatment within a month. Time is brain and I'm so grateful for the system and the city that my draw in the postcard lottery has allotted me
Thank you for the reminding this American that the grass isn’t particularly greener on the other side of the pond. I knew NHS had problems, but I didn’t realize the scope for pwMS! 😭
I waited over 15 years for a diagnosis of PPMS and it came at a very heavy cost! MS must be the poor relation of diseases
I am in the brink of giving up and waiting for this bitch of a disease to overcome me. I’m divorced and live alone and it’s just too much for me. No siblings family or anything. All I want is a bit of help. Famprya would be a life saviour but it’s easier to get an audience with the Pope. Someone please help me. What do I have to do?? PPMS is literally killing me. I was stuck lying on the floor for 90 minutes the other day alone in my house when my limbs gave up. I thought it was the end
Wish I could help you but I live in the US, and I am stuck in a nursing facility.
I agree . Thanks for being honest.
It really is a postcode lottery.
I have PPMS no dmt for me. I have just had to pay private to see my nhs neurologist to get fampyra prescription.
I have done the free trial and it’s game changer for me.
I will now have to continue paying for this as well as my private physio privately .
I am currently employed by the nhs as specialist senior nurse! It’s crazy if I don’t have this drug and physio the other option is retire me off with ill health pension.
Makes no sense !
How have you managed to get Famprya? I’m desperate for it. I’m in England
I have paid my seen my nhs neurologist but in his private clinic. He has prescribed this for me and I have had to pay to see him and get the prescription.
How much did the Famprya cost if I may ask?
It’s £197
Thank you for your honesty. It is clear that if you are newly diagnosed with MS, you should beg, steal & borrow to move to an area where high efficacy DMTs are prescribed. It is depressing to think of all those people who will have several major relapses whilst waiting to see a neurologist and access a decent DMT.
Many of .us MSers who were dumped or pushed out by employers have given hours of voluntary work over the years. Some of us working alongside others with the same qualifications for nothing. This may give the MSer a chance to work without pressure on those more difficult days. It is also due to the way the benefit system works for some people.
Personally I no longer do voluntary work. Balancing my health seems to be a full time job.
How insulting that your employers consider HCP are shirking. Do the management who put this 15 minute rule also stick to it ?? I doubt it. It seems we’ve got more of the same politically with the new “in crowd “ 🙄
What about people who have been diagnosed for over 3 years and had no treatment whatsoever?
You could have written this very thing about Canada. Waiting lists are unbelievable and I know someone who has been waiting 18 months so far to see a neurologist at the same MS Centre I go to. I have to travel 105km one way to get there. Health care resources are not finite and are in a shambles in Canada and any province who dares mention a hybrid of private and public services gets yelled down out of fear that the public system would just be abandoned altogether and only the whose with $ will get healthcare. Every provider I see is over worked and in my opinion, under compensated. I don't know what the answer is. Signed the Queen of the run-on sentences.
I feel as somebody with nearly 30 years of experience of living with MS that the amount of knowledge and data that could be gleaned from speaking and using the massive resource of people with MS would be invaluable to the Future! Comparing our biomarkers with a healthy member of the population is this a thing why is it that when people with MS improve with plasma exchange what's the difference between my plasma and that of a healthy person? Why are people who are pregnant so much better during this time what hormone is a neuro protector? These are just a few of my questions I would love to be a guinea pig and improve not just my life but the future of people with MS I had ebv when I was 18 is this still present in my body causing the inflammation?
Sent from Outlook for Android
Pregnancy creates massive increase in oestrogen which is anti inflammatory and neuroprotective.
Hear, hear! Good Point about all the acquired knowledge.
We moved house last year and although people berated us for choosing to find a house that meant I didn’t have to move to a non-central belt postcode, it has meant a more or less seamless transition in treatment. The 3mth blood tests have been dropped but that is all. Compare that with the Borders where even getting steroids when you have an optic neuritis flare is nigh on impossible then I’m happy we made that choice.
I worked for a while in the POP department of a big hospital in Newcastle and the amount of money wasted i.e. £25 for a simple 500ml plastic measuring jug when there was a pound shop across the road is mind-boggling. I would suggest that it is management that needs restructuring and replacing so as to free up hard-working staff from the ridiculous bureaucracy that ties hands.
The waste and stupidity In the medical community IS mind boggling.
My wife was diagnosed with MS 5 years ago. She is British but we live in Australia. After receiving alemtuzumab, we were lucky enough to have our first child (in our 40s no less). We have recently been discussing moving back to the UK so our daughter can spend some time with her grandparents. After reading this post, I really don’t think this is an option. Access to healthcare is vitally important, along with the ability to access a second cycle of alemtuzumab if required.
The Issues affecting the NHS also impact pwMS who do not live in the UK.
As far as I can tell Australia is the best place in the world to have MS if you have to have it. Biggest range of dmt options which are substantially subsidised and neurologists able and prepared to prescribe them. I know there are issues in the healthcare and disability systems there but it seems a lot better than most. So fight to keep it that way!
Yes, so I’ve come to understand. My wife’s experience has certainly been different from those commenting in this thread. Time from index event to diagnosis was approximately 4 weeks. Time from diagnosis to treatment, 6 weeks. That delay was largely due obtaining JC status (lab is located overseas). Thankfully, she hasn’t had to deal with the National Disability Insurance Scheme as she isn’t at a point where she requires any type of support. We are hoping it stays that way. That isn’t unrealistic given her treatment.
I'm in London. I had two relapses initially then was discharged from Moorfields, the hospital I first presented at. My third relapse was not eye related so I went to my GP. "NHS Choices" limited my hospital options to hospitals that didn't treat MS at the time. I "chose" (bit of a Hobson's Choice wasn't it) Homerton over the North Mid. By the time I was seen at a hospital that could diagnose and treat me (Queen Square) it was eight months and two more relapses later. I count myself so lucky that none of my five relapses was catastrophic. So even living in central/inner London postcodes (NW1 then N15) didn't help me in the postcode lottery.
Thats the problem, everything is not a cost centre, and that including human beings, patients! By making you account for every minute it disincentivises HCP,s which in the medium to long term is counterproductive. Politics over the last 45 years has been all about cost and not value. One of the worst terms I keep hearing is that I am economically inactive! I am not, I am disabled due to MS and have been unwell for years due to silo based NHS care. I have had "the kitchen sink thrown at me" for cancer treatment. I did not choose this life, I did not choose to have a low income, its not me but please shift the narrative, stop guilt tripping people over a silo based, postcode lottery healthcare system that limits them
When diagnosed with MS, I had a neurologist that couldn't prescribe any DMTs (2013) and when I relapsed, again, I was dropped by my neurologist and left with no care! Then when I finally saw a new neurologist, she asked me which DMT I was on ( obviously hadn't read my notes) and finally started me on one. Now with my cancer diagnosis I am not on any DMTs. However over the last decade I have been labelled economically inactive. We need to stop seeing the cost of everything and the value of nothing
Please don't shoot the messenger. I am just telling you what the reality is on the ground. I had elaborate ways to bypass the out-of-area rejection rule, which is why my MS practice was so distorted. Sadly these loopholes in referral vetting have been closed.
Not shooting the messenger, agreeing with your views. Scotland has a far more ridged system than England. Its almost impossible to change consultants within your own health board, never mind swap hospitals or health boards. Even when you know the consultant is holding back your healthcare, or worse (in my case) labelling you and not investigating your ill health, hence my late cancer diagnosis (I needed fresh eyes, and not ones that were blinkered) The reality on the ground for HCP must be frustrating, it certainly is for the end user, the patient.
Hi Tootes- Hmm, “economically inactive”. A new one…Lack of earning capacity precludes success with malpractice etc. in the states.
Its a term that has been used for a number of years by our last UK government to demonise those that are unable to work due to ill health, its insulting. I am hoping that our new government will drop the label. I for one don't choose to be on a low income, I would prefer to be well enough to work. No one would choose to have had the health challenges I have
I completely understand. No one chooses this, and the exhaustion. I’m sorry about your cancer as well; there can be more than one dragon with long term effects. Moreover, it’s often the luck of the draw, imo. For some reason, the there is a cohort of people that think chronic illness is a walk in the park, in one’s head etc. I have lost both friends and family members over the many years. We don’t need it from the govt, but there it is. Feel as well as you can. 💕
🙃🙃🙃🤗🤗🤗😘😘😘😍😍😍🥰🥰🥰
On the other side of the world, I was diagnosed within a week and on treatment within a month. Time is brain and I'm so grateful for the system and the city that my draw in the postcard lottery has allotted me
No pun intended, but I don't understand how most people haven't gone "postal" over this horrendous and deplorable treatment of human beings.
Very good, Christopher! Personally, I think we are disposable. I will shut up, after my political ranting yesterday. Always love hearing from you…: :)
Learned helplessness
Cynicism
Depression and despond at the population-wide level, except for those with serious £££
Thank you for the reminding this American that the grass isn’t particularly greener on the other side of the pond. I knew NHS had problems, but I didn’t realize the scope for pwMS! 😭
When “healthcare” is neither.