Someone had asked a quetion about certain RLS and Parkinson's drugs being blacklisted. I googled and found all kinds of newpaper articles. I quote" Expensive drugs are being blacklisted by health trusts". "Half of the 134 primary care organizations have the list, which bans GP's prescribing these blacklisted drugs." I think RLSer's in the UK need to go on the offensive here, and initiate some awareness to newspapers, tv stations. I know this has been done before many times, but now you guys cannot get the drugs you need, which is crucial to the sanity of many of you. I have already started. And, to our chairman and that RLS thing that the TV station is doing- they should know about this and tell about it if they truly wnat to get the word out. From what I have heard fo those producers, though, I would not hold my breath, but I would sure LET THEM KNOW about it. (not shouting, emphasizing. I have seen what a good email and letter writing campaign to do. unless you and others start making some noise about this, it may be ALL of the primary care organizations that have that blacklist, and you'll all be screwed who are getting meds now. You have to get active, get involved. It makes you feel more in control in a situation that may feel out of control.
Health activists make noise and get results/ :o)
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nightdancer
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Way to go Nightdancer! Unfortunately I'm old(er) and tired (aren't we all?!) but I will step back a bit and think where to START on this... Time to get the old Health Activist head out methinks and get writing and campaigning.
Just had a read on the NHS site well if they stop these medications I can see they have a fight on there hands because I certainly won't let it drop! As if we don't suffer enough with out people not thinking RLS is important... It would be if they sodding well had it!
The Department of Health has warned trusts that there should be no barriers to the latest approved drugs “beyond a clinical decision relating to an individual patient”.
Mmm...gonna be a complicated one this. The article doesn't exactly inspire confidence as there are as many "concerned" people and professional bodies as those supportive of the government's reassurances. For me the proof of the pudding is in the eating and I have been refused the use of 3mg/24hr Neupro patches 'cos of cost grounds. I live in Kent. To show lack of bias I will make enquiries to see what the attitudes of the powers that be are locally...
I know some of the articles are back in 2011 on the blacklistings, i found the up to date one the same as secret dancer, But, altho NICE says no Trust should be withholding expensive meds, it seems some Trusts are, proof is by reading on here where people are not getting any meds, for their RLS.
When i clear my fuzzy head this morning, i will be looking to who i will be writing to first.
I dont have a problem getting my meds. but you never know whats round the corner.
I highly suggest yo folow the link and read about it if you live in the UK. It is very common diabetes drugs, parkinson's Drugs that are USED FOR RLS, like Mirapex, cholesterol meds like statins to prevent heart disease. also, if anyone knows what the AMBER list is can you let us know? Am kind of dealing with a family emergency today which is very stressful, so I do not have a lot of time to find things. just google it,. like I said and you will get artcles from last year, and this year. the trusts were told as recent as Feb of this year that they could not blacklist drugs, but they are doing it anyway. I do not evem live in the UK , and I am ticked off fr you guys that do!
as far as i can make out, from talking to the pharmacist this morning, the Amber list is the next in the firing line, and Mirapexin is on that list !!!
i have had the neupro patch, around a year ago, been to the doctors this morning, and guess what, i cant have it,!!!! so i think that answers my question
Oh crap!!!!! Give me a break. I am having a very hard time learning about your healthcare system. I am learning, b ut this really makes me mad, Niah! I n=know how andry you must be. will talk to you tomorrow (Thurs) a.m. I am sooooo sorry!
OMG, Jean, i think i will be phoning my doctor tomorrow, i need to know when this will hit me........s**t
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precisely ...lol
Oh and niah177 what is the Amber list.and where do you find it...??
pfff i was looking online last night petal, and i saw it there, cant remember now,but i put something on my f/b check it while i go look for it again, you are a pain really you are, and dont bother nag me im not well
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Oooops, niah got the hump...lol... joking, sorry you not well hun...
Alot of us will be more than "not well" if we loose our meds....pffff.
i just remembered, i googled it, just put.. ... drugs that are blacklisted ok petal
the thing on my f/b was about a trail for mirapexin, they did a MASSIVE trail on 10 people and found "it didnt work well" pffffffffffffffffffff
yes, if I get how your trusts are set up, half of them are blacklisting and half not, aso I assume it affects different areas of the country. I thought our health care system was screwed up. Wow.............is all I can say the more I read. We all know the drug compaanies do not operate with the best of intentions all of the time. money drives greed. Seems to me, the drug companies should out the prices down, too, to help the trusts operate more efficiaently and with the patients' best interest at heart. yeaah right! The same thing is happening, in a different way over her in the US with all the bad press on pain meds. The ones they will pick on next are the time released meds, like the morphine I take for my back , as well as RLS. Without that, I am screwed royally. so, we have fights on both sides of the pond. Do NOT take my pain meds away. Nothing else works for ME. keeping my eye on this stuff, as well. What a mess. We go through all these things and wait and wait for drugs to be approved and then some idiot in an office with a calculator says "NOPE! too expensive, just suffer!"
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i came to that conclusion to petal...postcode lottery is right so it seems
notv sure about that, but I think each health trust is picking what driugs that they want to blacklist in particular. I stil do not get how this is even legal when NICE told them this year that they could not do ot. It is like going against the FDA over here. It just does not happen. However, the biggest private insurer *(Blue Cross Blue Shield) has already banned the pain meds I use for MY RLS in a few states, so I am waiting to see how ths rolls out over here, too. we may all be miserabel really soon. :o(
They are giving you pain medicine for pain, right?
They can't deny you for that reason, can they?
It worries me for you as well.
My doctor gave me Vicodin (5 pills a month) for pain...
he didn't say restless legs at all for the reason.
Right now, it's 2:30am in the USA and my legs are going
at it bad. I feel sick from lack of sleep the past 3 nights.
I'm reading this in horror for our UK friends.
I did a lot of walking around on my tip toes to try
to settle my legs down. It worked for 20 mins at a time.
Maybe I will tip toe upstairs to my bed and sleep with
my feet on the ground and head on my pillow?? It's
a rough one and reading these posts upset me too.
I have phoned my doctor this morning, asking if he has heard if the Trust in my area is blacklisting the RLS meds. He said he hasnt heard anything about our Trust doing it, but he was aware of it happening else where, and its not just RLS meds. I told him of my concerns if it did happen, he said they couldnt stop all RLS meds. If it did happen and they stopped the patch which i am using he said i would have to apply for something called special needs to get it.
This i think WILL happen eventually to all areas, regardless where you live.
I am going to be writing the the Minister of Health, straight to the Houses of Parliment., voicing my concerns....i doubt i will get an answer, or a straight answer, but at least i will have tried something, after that then i will see where to go next.
I contacted my MP this morning and await his reply with interest (it could lead to letters to local papers etc.). The hospital pharmacy said you can find details of the blacklist drugs by asking at your local community pharmacy. I assume that our Chairperson reads these and will step in if he thinks we're stepping outside our charity remit... Perhaps we could start "RLS Action" or summat?
since the Chair has not popped up in weeks, I am assuming that this is NOT inappropriate, and why would it be?? We are trying to help fellow RLSer's here, so there is nothing wrong about that. This is called health activism, so keep it up, and don;t stop. Things don;t get done if people sit back and do nothing. so, organizations like the UK RLS Foundation should be all over this. Why aren't they? probably not enough staff like the other one in the US. that is why we have to pick up the slack for them. I get they do not have the people or funding to do it, so that is where we come in. Nothing gets done if you wait for other people
to do it for you. :o) That is my mantra. do not expect other people to do all the work. Everyone who lives in the UK should be all over this; it affects other people and other serious conditions besides RLS, as well. I know we all just do not have RLS. We all have a list of things wrong with us. :o) We are working on pain meds in the US. that is the only thing that controls my RLS, so I will never stop or be quiet about it. But, that's me. Lots of members of my groups are writing letters also. I have done several successful letter writing and email campaigns, and we even took on a US Congressman for making a joke about RLS on national TV. We got a written letter of apology, AFTER one of my people went to his office in Washington DC. I ahve gotten several web sites that are selling RLS "cures" taken down off the internet, so we have a record of success. That is how we get things done over here on this side of the pond, so there is no reason not to speak up. so, no, I do not think this is inappropriate in any way at all. :o)
Well done Tpebob, will be interested to hear what he has to say. No good me contacting mine yet, as its not happening my way as yet.
Thats why i will go to the top so to speak, see if Mr. Langsley has anything to say about it.
I am thinking if i do get a reply, it will be that NICE has said no meds should be withheld by trusts, if i dont get a reply or dont like his answer, then the papers will be my next place to go...
I would think if our posts and comments were not appropiate we would have heard by now from the Chair.
Hello again all. I'm all for Elisse going to the top; brilliant! I was a bit busy when I posted earlier so forgot to ask whether anyone/s out there has links with other support groups or illness organisations. The reason I say this is because, as others have mentioned, it's not only our meds which could be affected but those of other disease sufferers too, i.e. diabetics, asthmatics, those with Parkinson's Disease (if my memory serves me right!?). Could anyone contact such people or has the time to do so? If we can link up and be part of something with a bigger voice so much the better. Nightdancer's campaigning experiences are gold! My reason for mentioning the charity status of RLS-UK is because charities in the UK are tightly regulated and cannot be deemed political in certain areas. I would agree that it is our only organisation and should fight for us, however one thing we must face is that, if we begin to get somewhere and start p***ing off the powers that be, they'll start labelling us as "lefty, troublemakers" or somesuch, belittle our campaign and attempt to reduce our credibility. Then RLS-UK could suffer and so would we. RLS affects all, irrespective of social background or political persuasion. We are united in defending our access to the treatment that allows us to sleep at night and/or lead a semblance of a normal life. Yes, "there is no justice, just us" (to quote Chumbawamba), so (as Nightdancer says) we can't wait for others to do stuff for us. We're making a start and doing the best we can, each in our own way; what more can we do? Grud, I'm getting carried away here! 'Got drying up and ironing to do... Life is politics and politics is life. Love to you all, Tpebop.
Thank you for that information, Tpebop. did not understand about charities and politics over there. But, we are bashed ALL the time over here when we speak up, and it does not shut us up. I have been insulted for 15 yrs along with my groups, and it only spurs me on more. :o) will be looking stuff up tomorrow for other orgs. You must have a Heart Association over there re- cholesterol meds that are being blacklisted. I would think they would have the biggest voice, also the Parkinson's Foundation has British chapter or something similar. Will get all that together tonight after I settle down this evening. I do have the time. i am the caretaker for my 84 yr old mother who just had open heart surgery, so that is what I do, plus I am on permanent disabilty, too, so I do not work, officially. I mainly do this now ;o)
and, we do have a small army that can speak up of they are not afraid to. Like I said, I do not understand the whole British system, but I do know one thing. No matter what country you are in a human being has the right to competent health care, and nobody should ever argue that fact. Like I said the more we get bashed the noiser we get, and that is how it goes in my groups. Just sayin........I do literally have a small army, numbering about 3500 people. I was just told yesterday by some Dutch students doing an online health group survey study for their master's thesis that my groups have given the most answers over the last month, and my big group seems to be the most motivated. :o) I will never give until the day I die to get respect and good health care for people RLS and all sleep disorders, for that matter.
Also, it was mentioned yesterday that we should try and contact some of the bigger charity orgs in the UK to join in here. I was looking at the list of groups on this web site, and there is the group for the UK Parkinson's.org, heart "association", etc, etc. I think we can find who we might need right on this web site. They are all right here! :o) On my way to join a few groups. I can almost fit into any support group anyway, because I have everything. :o) or almost........ I have even had a stroke that took the sight in my lerft eye, but my right eye works great, so no biggie! :o) But, I can join the heart disease support group, Parkinson's (don't have that, but my father did),I am a cancer survivor ,, asthma,wicked migraines (which also goes along with strokes), etc. I am off to go get nosy. :o)
Great idea nightdancer, you can sound them all out. I know you have all the health issues you have stated above plus more...not nice any of them, but great for going from group to group, which most of us wouldnt be able to do...
hi all, well im loveing you all getting to grips with this, and i agree wholeheartedly, ive voiced my opinions, and was all ready for a fight with you all, but now im going to leave you all to it as i have others health problems i have to deal with, so im taking a back seat folks, go do your best
Just ask your doctor about the "special needs" thing that Elisse mentioned. I will write to ypu privately. do not give up! You can still fight. But, I do not blame you for feeling defeated. I would , too, but I am just mad now. hugs to you!
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Dont worry, you take care of your health issues for now.
I am really concerned about this and would probably be very ill if I did not take my meds. I am going to see my gp. What can I do to stop this from happening?
Read the comments above from Elisse. If you are in the UK, you can ask your doctor to put in a "special needs" request for the med you need. You used the abbreviation GP, which is usually used in the US for "general pracationer" for the "family doctor". Elisse uses MP, which I am not sure exactly what it satnds for, but I assume it is like our GP's in the US.
They are legal, but it is the most expensive drugs they are blacklisting. The UK doctors can put in "special needs requests" for the black listed ones. It goes by different reas, so some parts of the UK are dealing with this now, and some are not yet.
Primary Care Trusts will be stopped from blacklisting drugs approved by the NHS drug rationing watchdog from April 2013, according to the Department of Health. NHS chief executive Sir David Nicholson has written to the leaders of the PCTs and Strategic Health Authorities telling them to start removing drugs from local blacklists that have been approved by the National Institute for Clinical Excellence. He added that this would be a standard clause in NHS contracts from next year. NHS chief pharmacists will also be asked to review local formularies - the list of preferred generic and brand name drugs.
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that was back in April 2011, we might be safe.
My Opinion: Collateral Damage due to Discontinuance of Pramipexole
Medscape article on RLS
