Draft NICE MS guidance is a camel! #MSBlog #MSResearch
“National Institute for Health and Care Excellent (NICE) have a wider remit than simply ruling on whether or not a new therapy is cost-effective, or not. They also produce national guidelines on how to manage a condition that is then used as a gold standard for setting quality standards and setting-up services. The last NICE MS guidelines came out in 2003 and were in need of an update. Unfortunately, the draft guidelines are not fit for purpose; they are too long, too prescriptive and make recommendations that are not backed by class 1 or 2 evidence. NICE have asked stakeholders to respond. As an active member of the Association of British Neurologists (ABN) MS Subcommittee I have made my thoughts known to the committee members who have be tasked to prepare an official ABN response. The open letter below highlights the MS Society’s and MS Trust’s position on this. It is good to see charities taking a stand on behalf of their constituents; MSers and their families living in the UK. After this I sincerely hope NICE will review their processes to make sure their guidelines are more in line with current practice and evidence.”
“I am very disappointed that the draft doesn’t support MRI monitoring of MS disease activity to optimise the use of DMTs. They have included this in their alemtuzumab STA, but not their national guidelines. NICE are also overrule the MHRA and EMA when it comes to making recommendations about licensed therapies. I wonder if NICE’s left hand is aware of what its right hand is doing; lost in translation and complexity. NICE sure knows how to make a camel of things.”
“A camel is a horse designed by committee!“
“National Institute for Health and Care Excellent (NICE) have a wider remit than simply ruling on whether or not a new therapy is cost-effective, or not. They also produce national guidelines on how to manage a condition that is then used as a gold standard for setting quality standards and setting-up services. The last NICE MS guidelines came out in 2003 and were in need of an update. Unfortunately, the draft guidelines are not fit for purpose; they are too long, too prescriptive and make recommendations that are not backed by class 1 or 2 evidence. NICE have asked stakeholders to respond. As an active member of the Association of British Neurologists (ABN) MS Subcommittee I have made my thoughts known to the committee members who have be tasked to prepare an official ABN response. The open letter below highlights the MS Society’s and MS Trust’s position on this. It is good to see charities taking a stand on behalf of their constituents; MSers and their families living in the UK. After this I sincerely hope NICE will review their processes to make sure their guidelines are more in line with current practice and evidence.”
“I am very disappointed that the draft doesn’t support MRI monitoring of MS disease activity to optimise the use of DMTs. They have included this in their alemtuzumab STA, but not their national guidelines. NICE are also overrule the MHRA and EMA when it comes to making recommendations about licensed therapies. I wonder if NICE’s left hand is aware of what its right hand is doing; lost in translation and complexity. NICE sure knows how to make a camel of things.”
“A camel is a horse designed by committee!“
Even as a layman (with MS) I can see that MRI monitoring is critical. Have I got more lesions? Is my MS under control? Is my drug working?Answer: I just don't know…
How many more MRI scanners would the NHS have to buy to monitor DMTs? How could this be done? Is there doubt as to whether the DMTs work? I would rather see the money put into finding the cause of MS. This would only be justifying the NICE approval of the medication.
I am not sure how many more scanners would be required or the logistics, how backed up are the current MRI lists for MS and non-MS related scans? is this an NHS problem with just MS or across the board? I agree that finding the cause is critical, however, there are MSers that can be better served than they currently are given the new DMT era with the correct monitoring now – should these MSers be totally ignored in the pursuit of the true cause? The multiple phase 3 trials of several DMT's do suggest they are effective. It is not just justifying NICE approval, it is responding to decent evidence and making a huge difference
There are so many diseases that require MRI scans for diagnosis, I can't see how this is feasible. It seems we are not considering other patients.