Aa
From the UK -MS Pts Aren't receiving treatment.
I really have to share this one - the url where I found it is listed at the bottom of the post.
Multiple Sclerosis Patients Are Missing Out On Drugs
Only 40% of people eligible for drugs to combat multiple sclerosis in the UK are actually taking them, says a report from the MS Society.
A survey of more than 10,000 adults with MS showed that many were missing out on the seven licensed medicines approved for use.
The charity said a lack of information and access to specialists was to blame.
It is calling for the government to provide a personalised care plan to every person with MS.
The MS Society's survey and accompanying report showed that there were differences in access to disease-modifying treatments (DMTs) across the four nations of the UK.
These are medicines that can reduce the frequency and severity of MS attacks, and in some cases can slow the progression of the disabling condition.
Someone living in Northern Ireland with MS was twice as likely to be taking a DMT (68%) than someone with the condition in Wales (30%), for example.
Access to treatment in Scotland and England was only a little higher at 36% and 40%.
In Europe, additional research shows that only Poland and Romania have a smaller proportion of people with MS taking licensed medicines.
Routine assessment
The charity's report said that being well informed about the medicines available was crucial.
Those who felt they had enough information about medicines were 32% more likely to be taking a DMT, the survey found, and those with access to a specialist MS nurse or neurologist were more than twice as likely to be taking the appropriate drugs.
Northern Ireland is the only place in the UK where most people with MS are routinely invited every six months to see a neurologist or MS nurse for a review.
This means that people with MS are constantly having their treatment options assessed, the report says.
As a result, they are more likely to get the information they need and discuss issues such as side-effects.
Yet this may not be the only solution. Forty-one per cent of those who said they did have enough information about drug treatments still did not take a disease-modifying treatment.
The report concluded: "This could be due to barriers to accessing medicines; because individuals make an informed decision not to take them; or because they don't know what information is out there that they could have access to, such as around new treatments or new evidence of efficacy."
New policy
Nick Rijke, director for policy and research at the MS Society, said people with multiple sclerosis were facing a lottery.
"These findings worryingly suggest that the likelihood of someone receiving a life-changing treatment is often based on luck - like where they live or how helpful their healthcare professional is - rather than their genuine clinical need.
"When it comes to prescription rates, the UK ranks 25th out of 27 European countries. Given the relative wealth of the UK this is simply unacceptable."
The MS Society is now calling on all four governments in the UK to ensure every person with MS has a personalised treatment, care and support plan, with two comprehensive reviews each year.
Ed Holloway, head of care and services research at the MS Society, said that because some MS drugs were costly, they were often not offered when they should be because of restricted NHS budgets.
'Speak to doctor'
A spokesman for NHS England, which has recently taken on the commissioning of treatment for MS from primary care trusts, said a new policy from 1 April would mean that people across England would have the same access to treatment.
"By making decisions nationally about specialist treatments, we are confident that patients will now be able to receive the treatment they need, irrespective of where they live.
"As with all policies, we will continue to collect and review the outcome of treatments for patients and consider them when our policy is reviewed.
"If a patient has concerns about the treatment they are receiving we would urge them to speak to their GP or consultant."
--Courtesy of BBC News
taken from
http://www.brudirect.com/index.php/Health/multiple-sclerosis-patients-are-missing-out-on-drugs.html
Multiple Sclerosis Patients Are Missing Out On Drugs
Only 40% of people eligible for drugs to combat multiple sclerosis in the UK are actually taking them, says a report from the MS Society.
A survey of more than 10,000 adults with MS showed that many were missing out on the seven licensed medicines approved for use.
The charity said a lack of information and access to specialists was to blame.
It is calling for the government to provide a personalised care plan to every person with MS.
The MS Society's survey and accompanying report showed that there were differences in access to disease-modifying treatments (DMTs) across the four nations of the UK.
These are medicines that can reduce the frequency and severity of MS attacks, and in some cases can slow the progression of the disabling condition.
Someone living in Northern Ireland with MS was twice as likely to be taking a DMT (68%) than someone with the condition in Wales (30%), for example.
Access to treatment in Scotland and England was only a little higher at 36% and 40%.
In Europe, additional research shows that only Poland and Romania have a smaller proportion of people with MS taking licensed medicines.
Routine assessment
The charity's report said that being well informed about the medicines available was crucial.
Those who felt they had enough information about medicines were 32% more likely to be taking a DMT, the survey found, and those with access to a specialist MS nurse or neurologist were more than twice as likely to be taking the appropriate drugs.
Northern Ireland is the only place in the UK where most people with MS are routinely invited every six months to see a neurologist or MS nurse for a review.
This means that people with MS are constantly having their treatment options assessed, the report says.
As a result, they are more likely to get the information they need and discuss issues such as side-effects.
Yet this may not be the only solution. Forty-one per cent of those who said they did have enough information about drug treatments still did not take a disease-modifying treatment.
The report concluded: "This could be due to barriers to accessing medicines; because individuals make an informed decision not to take them; or because they don't know what information is out there that they could have access to, such as around new treatments or new evidence of efficacy."
New policy
Nick Rijke, director for policy and research at the MS Society, said people with multiple sclerosis were facing a lottery.
"These findings worryingly suggest that the likelihood of someone receiving a life-changing treatment is often based on luck - like where they live or how helpful their healthcare professional is - rather than their genuine clinical need.
"When it comes to prescription rates, the UK ranks 25th out of 27 European countries. Given the relative wealth of the UK this is simply unacceptable."
The MS Society is now calling on all four governments in the UK to ensure every person with MS has a personalised treatment, care and support plan, with two comprehensive reviews each year.
Ed Holloway, head of care and services research at the MS Society, said that because some MS drugs were costly, they were often not offered when they should be because of restricted NHS budgets.
'Speak to doctor'
A spokesman for NHS England, which has recently taken on the commissioning of treatment for MS from primary care trusts, said a new policy from 1 April would mean that people across England would have the same access to treatment.
"By making decisions nationally about specialist treatments, we are confident that patients will now be able to receive the treatment they need, irrespective of where they live.
"As with all policies, we will continue to collect and review the outcome of treatments for patients and consider them when our policy is reviewed.
"If a patient has concerns about the treatment they are receiving we would urge them to speak to their GP or consultant."
--Courtesy of BBC News
taken from
http://www.brudirect.com/index.php/Health/multiple-sclerosis-patients-are-missing-out-on-drugs.html
I am still dumbfounded by all of this........ I would hope in the modern world we would do better for our patients.
COMMUNITY LEADER
I'm not surprised at all, I wouldn't be surprised if the situation in Australia wasn't at least as bad or worse, although i wouldn't think it was because of budget issues as mentioned. We are part of the commonwealth so our health system is modelled on the British system but it isn't exactly the same and over here i'd think it would likely be due to people being in the later stages by dx.
Our pwMS are out of the work force, with most on disability benefits within 5 years after dx, and as i've said before, our MS stats are only 0.01% of the population, so it takes a long time before MS even gets on anyone's radar. It makes me think, that 'if' the DMD's are specifically to slow down relapse rates and alter the course, causing less disability or a longer time frame until they reach the high disability status. Then DMD's are less useful to those who have already reached that disability status, by the time MS is found............it's too late!
The waiting times for us to see a general neuro in the public system, would probably be similar to Britain, averaging 8 weeks from the time the referral gets processed. It took me just shy of 10 weeks to see the neuro after seeing the GP, another 8 to get the MRI's done and it was 7 (or 8 oops cant recall) more before getting back to see the neuro to get the results, which is about 6 months. No offence to anyone but i'm not capable of waiting that long, before I start doing everything I can to fight it back, not happening to this little chickie babe because of how the system works.
I really think this statement ""These findings worryingly suggest that the likelihood of someone receiving a life-changing treatment is often based on luck - like where they live or how helpful their healthcare professional is - rather than their genuine clinical need. "" is well said and definitely applies to Australia too!
Cheers.......JJ
PS Kyle hip replacements can take years going through our public system in Victoria, its not classed as a priority, and people move from one waiting list to the next one higher up but when they hit the last, the priority list, its a couple of months. My MIL has just got on the priority list, after a couple of years of list hopping, its shockingly outrageous!
Our pwMS are out of the work force, with most on disability benefits within 5 years after dx, and as i've said before, our MS stats are only 0.01% of the population, so it takes a long time before MS even gets on anyone's radar. It makes me think, that 'if' the DMD's are specifically to slow down relapse rates and alter the course, causing less disability or a longer time frame until they reach the high disability status. Then DMD's are less useful to those who have already reached that disability status, by the time MS is found............it's too late!
The waiting times for us to see a general neuro in the public system, would probably be similar to Britain, averaging 8 weeks from the time the referral gets processed. It took me just shy of 10 weeks to see the neuro after seeing the GP, another 8 to get the MRI's done and it was 7 (or 8 oops cant recall) more before getting back to see the neuro to get the results, which is about 6 months. No offence to anyone but i'm not capable of waiting that long, before I start doing everything I can to fight it back, not happening to this little chickie babe because of how the system works.
I really think this statement ""These findings worryingly suggest that the likelihood of someone receiving a life-changing treatment is often based on luck - like where they live or how helpful their healthcare professional is - rather than their genuine clinical need. "" is well said and definitely applies to Australia too!
Cheers.......JJ
PS Kyle hip replacements can take years going through our public system in Victoria, its not classed as a priority, and people move from one waiting list to the next one higher up but when they hit the last, the priority list, its a couple of months. My MIL has just got on the priority list, after a couple of years of list hopping, its shockingly outrageous!
I'm also glad I have coverage, my co-pays and out of pocket just keep going up...and up..
then again I do pay a monthly premium and that also has gone up..
take care
JB.
then again I do pay a monthly premium and that also has gone up..
take care
JB.
This makes me realize that I really need to stop complaining about my healthcare and really start appreciating what I do have :)
Deb
Deb
NZ is no better than the UK. The wait to see a Neurologist in the 'private' system is about six months if MS is suspected.
As for DMDs, forget it. You have to be fairly disabled and have lots of relapses to even qualify for a subsidy to obtain them. Otherwise you have to come up with $1100 a month yourself.
Hence, there's really no rush to see anybody because in 90% of cases, having a diagnosis changes nothing.
As for DMDs, forget it. You have to be fairly disabled and have lots of relapses to even qualify for a subsidy to obtain them. Otherwise you have to come up with $1100 a month yourself.
Hence, there's really no rush to see anybody because in 90% of cases, having a diagnosis changes nothing.
I need to stop complaining when my neurologist is booked out for two months. Good grief! How awful for them. I hope changes are made soon.
Tammy
Tammy
I live in the UK and I wish I was in America. The wait to see a neurologist is at least three months, then another 6-8 weeks to have MRI and other tests, then another 3 months to see neurologist again for results. Its shocking and quite frankly disgusting. Then if you do have MS, God only knows what happens to you. I am in the process of waiting till June to get my results and see neurologist from initially seeing him at the start of zMarch!!!!!!!!!
When I hear tales from folks in countries with "free" healthcare, I'm thankful I live in the U.S. As screwed up as our health care can be, I am able to see the doctors I want, when I want.
It's not just MS either. When I had my hip replaced I heard from people in the UK and Canada having to wait 6-9 months to see an orthopedic surgeon. Walking around on a hip that lasts 25' before becoming excruciating is no fun. And 9 months of that?
I don't mean to offend our friends form the UK or Canada. Nor am I suggesting that all access to medical care in these countries is government controlled. I know it's not. But...
Kyle
It's not just MS either. When I had my hip replaced I heard from people in the UK and Canada having to wait 6-9 months to see an orthopedic surgeon. Walking around on a hip that lasts 25' before becoming excruciating is no fun. And 9 months of that?
I don't mean to offend our friends form the UK or Canada. Nor am I suggesting that all access to medical care in these countries is government controlled. I know it's not. But...
Kyle
This is a wake up call for those of us here in the US, not ti take our access to treatment for granted. We are unbelievably fortunate to not only have the information on treatment but also a mechanism for receiving it.
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