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Restless Legs Syndrome

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The "Blacklisted Drugs Campaign": an update.

Tpebop profile image

Hi it's Tpebop from Kent in the British Isles here. Thought I'd give an update of what I've been doing.

I've received no reply to my e-contact to my Member of Parliament (MP - sort of like an American Senator I'd guess Nightdancer) yet and it's been three days. I'll give a few more days then write a letter, then cause a stink if I get no-where.

I asked at a community pharmacy about the blacklist and the amber lists etc., mentioned in these pages. Essentially what is prescribed is NOT (emphasis not shouting) up to them. After our quick chat it became quite clear where the problem lies. Our Primary Care Trusts (PCTs - organisations that provide and fund local NHS services in the UK) have been concerned about costs of drugs and probably applied unofficial bloacklisting which our GPs (you know what that means now Nightdancer, a sort of "family doctor"; do you have such things in the US?) who receive money from the PCTs have picked up on. The present British government is doing away with PCTs and passing control of costing to GPs. It sounds fine until you realise that all layers of the NHS are meant to make significant cuts. The politicians label them something else like "efficiency savings" but don't be fooled: the NHS and patients are suffering because of the financial constraints. So, now some of the GPs have cottoned on to the fact that THEY will control LIMITED funds and so have had to look at the cost of meds and will weed out the expensive ones. The government has made it clear: patients should have the medicines they need irrespective of the cost.

In my case 1 or 2mg/24hr Neuro patches (cheap); no problem; 3mg/24hr (MUCH more expensive); sorry can't have.

I'm just starting to uncover what this is all about but I think we may have to START CAMPAIGNING IN OUR OWN GP's SURGERIES and insist we have the treatment we need and if we don't get it contact local authorities/MPs etc.

The beat goes on...Tpebop.

12 Replies

my pharmacist gave me the costs for the patch when i first used it, that was in 2010, it was £143 then, didnt matter the strength of it, it was all the same

Yes, know about all the changes the government are doing to the NHS system. Dont know when this change over is taking place to our doctors and i think the hospitals too.

I guess we will have to pray we have a good doctors surgery who will understand our needs regarding what meds. we have to try to get the relief from the RLS...or any other health issues come to that.

After talking to my doctor about my concerns about it all, i do feel somewhat reassured that i will get my RLS meds.

But i am sure, in fact i am almost certain, many will have a struggle to get their treatment, if its going on right now then when the change takes place, the doctors will be playing god and how they spend the money and on what treatment will be interesting to say the least.

This is in my opinion the worst thing the government has decided to do. The NHS was set up so ALL had treatment regarding of their income, which meant even the poorest would not be denied. This is going against that, and we have a NHS constitution, does that have to be re-written now?? :(

Ok, will get off my soap box now... :)

nightdancer profile image
nightdancer in reply to

Wow, this is going much deepedr than I thought! Will catch up on it all tomorrow. It is 1:15 a.m. yawn :o)

Tut, that should have been....regardless of their income.... :)

Keep up the good work. I tried to get Neuro patches from my (very supportive) GP. He said he must go through all other methods to relieve the RLS as he was under strict instructions not to prescribe them because of the cost unless it was vital. After three nights with little sleep it seemed vital to me!!! Anyway I am now on the top dose of Roprinorole which worked for a month but the symptoms are creeping back. It seems it will be back to the drawing board.

Tpebop profile image
Tpebop in reply to ffrwdwin

Mmm...the key question here is: who was giving him the "strict instructions"?

nightdancer profile image
nightdancer in reply to Tpebop

EXACTLY> The doctors will be now trying to cover their own butts, more than usual.

in reply to ffrwdwin

I guess your doctors next option will be Pramipexole, unless you have already done that one.

I would say his strict instructions came from his surgery, i have seen that happen before. Someone i know from another group, was given the Neupro Patch, and when she went back to ask for it to be upped to the next dosage, her doctor, said, i cant give the patch to you anymore, i have been told i cant prescribe it, i would be in trouble if i did, and that happened ages ago.

This is probably what will happen when the change comes for all surgeries to deal out the money for meds. the cheapest ones first...

Irene. UK

Trebop

This is potentially very worrying!!! I missed the earlier posts.

Please keep us updated at regular intervals. Also I think the 3 day period is too short, for an initial query I would allow 28 days, a lot shorter once in communication.

Finally I may be willing to assist should you need any help.

Kindest

Bob M

Thanks for the tips about dealing with MPs Bob; fair enough but I thought an automatically generated response acknowledging the email would be acceptable in this day and age...

I have made more enquiries about blacklisting over the past few days I and think we need to be clear as we are talking about several same-named bits of information and could get confused (at least I have been!). The main drugs blacklist is one used by pharmacists in the UK. It's called section XVIIIA of some regulations, commonly known as The Tariff. This blacklist is a set of guidelines to doctors and pharmacists that basically say "if there is a cheaper alternative to these drugs use them, if not you won't get the NHS money back" and "You can no longer presecribe these drugs". It doesn't really affect us yet as none of our drugs seem to be on it.The other blacklist/s refer/s to unofficial ones being used by NHS bodies and/or GPs to save money by not allowing prescription of certain expensive drugs. This does affect us as well we know. One of you good folks mentioned an "amber" list; that sounds particularly interesting and worrying. Please give more details where you got your info from.

For those of you getting upset about all this, please don't. However, we do need to do something. Not all of us can for a variety of reasons. Those of us that can do something may have limited time or just be too knackered. We're starting on this and doing our best.

Cheers, Tpebop (Kent, British Isles).

in reply to Tpebop

Thanks for the info you have found out about the blacklists. Didnt know there were so many...lol.

But it makes it clearer now and yes its the unoffical one being used that is obviously affecting some of us when needing the more expensive med for RLS...we need to have the option to use them all when others ones have not worked.

Also if that list is unoffical then i dont know how it can be legal...!!

Irene. West Sussex.UK.

There you go. yes, my family doc is called a GP, general practioner. Keep up the good work. I can exect, doing many emails campaigns, that you wll have to wait more than 3 days for an answer, no matter what country you are in.. The idea is to write as many emaisl as possible to as many people as possible. GOOOD START! I was "unplugged" all weekend, so am catching up. :o)

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