Blacklisting of RLS drugs in the UK: result of contact with my MP.

[Tpebop]

My MP had contacted the chief executive of my nearest NHS Primary Care Trust (PCT) to answer my concern over allegations that GPs were being discouraged from prescribing the Neupro patch and, possibly, pramipexole because of blacklisting due to the cost. Both meds are important to RLS sufferers. I have received the reply and can report the outcome. Any words in capitals will be emphasis not anger. The response goes a long way in possibly explaining the problems that some of us have had in getting RLS meds from out GPs.

I suspect that my area is not alone in that the local PCT has a "formulary". These contain names of meds that been examined for clinical and COST effectiveness. They are subdivided into four categories: green - GPs can precribe any of these; amber - initiated normally by a specialist consultant as the knowledge of their use may be beyond most GPs; red - only for use in secondary care (no, don't know what that is!) and blue - can only be given after authorisation at trust level. The response goes on to say that very few drugs are actually blacklisted but if they are it's because of national advice or that they are not recommended locally. They will not be locally recommended if evidence for their benefit is insufficient or they are NOT COST EFFECTIVE. These are decided by a national body for health and clinical effectiveness (NICE - an acronym not emphasis) based on a measure of Qualified Adjusted Life Years. To my horror, when I googled that expression it says that it is a measure of VALUE FOR MONEY of a treatment for someone, so, yes, folks our lives HAVE been costed up by some economist and/or politico somewhere. Also Neupro and pramipexole are deemed to be drugs for Parkinson's Disease so their use in treating RLS seems surprising to the powers that be.

So this may reassure concerns about an amber list being a "danger of removal list" mentioned previously by other posters. It may also explain why a GP may not prescribe you the patch on their own because they don't know much about RLS (not uncommonly reported on these pages) and are worried about prescribing Neupro etc. This could be the case in my situation because the Neupro patch was recommended to one of my GPs by a SLEEP CONSULTANT whom the second GP who refused prescription had had no dealings with. Finally our meds should NOT be blacklisted (officially at least) but cost effectiveness clearly does come into the equation. With the new NHS legislation coming into effect next year and NHS budgets already tightening, one can see that GPs may choose not to prescribe our meds because of the cost. I hope that is not the case.

I have tried to be unbiased and reportive in the above: one can feel either reassured or not depending on how cynical you are. We need to keep on our guard and act swiftly and positively whenever necessary. All the best, Tpebop, Kent, British Isles.

[jigglylegs]

Thank you for your comments Tpebop. Secondary care would be hospital or specialist community care. So drugs such as anti-psychotics which would not be prescribed by GPs or monitored by them but they would probably repeat prescribe in between consultant appointments, if that makes sense. As a nurse I have watched with some dismay as cost effectiveness has become the standard by which we provide care.

[Hidden]

Thanks for the report Tpebop, some of it makes sense, some doesnt.... NICE, has approved pramipexole, ropinerole and the Neupro Patch to be used for RLS, so doctors shouldnt be "alarmed" that they can give them to patients for RLS. I agree maybe some doctors who are not up on RLS, could get the jitters and they refer people to Neuro's.

I guess because my doctor has never refused me any med for my RLS, i find it strange that other doctors do. When i went to ASK for the patch, it had only just been approved for RLS, and my doctor didnt have it show on his comp. or in the meds "bible" they look at. But he took my word for it and trusted me to know what i said was true.

I also still DO believe it is down to cost for some surgeries. no one knows if a medication will work until its tried, so holding back on the expensive meds is nuts, these doctors are withholding meds at the expense of their patients health.

Will be interesting to see how things pan out when the change comes....I am sure we will be hearing from many RLSers that they cant get the meds they need.

Once again thanks for posting.

Irene. UK.

[CathyS]

Good information ~ thank you! The Neupro patch was withdrawn from the US market years ago, but recently was approved again. When it was released, it was officially approved for use with RLS!!! (I was involved in the trial.) It seems very inefficient that a drug must go through trials and testing in each country. RLS is RLS and Neupro is very effective in controlling it and I hope for the sake of all who suffer from it that the patch will be an available option for all. I understand the cost issue, but unless you've been there, you can't put a monetary value on SLEEP!!

[Hidden]

i agree, Cathy, sleep is the basis of life! I would like to see what the powers that be would do if they were denied the one drug that could help them lead a normal or as near normal as possible life. The Neupro patch is the best drug for me and my RLS, it has been a gift from above! I honestly don't know what I will do if I cannot have it. Jump out of a window probably.

[funnyfennel]

To throw something else into the mix. Why are they so expensive (rhetorical question)

If the drug companies were not making huge profits, but fair profits one could accept the costs for some of the very useful drugs that are developed...as we all know the price does go down after awhile, once other companies are able to manufacture them...just a thought.