Cost Cutting on my Drugs

Well here we go again.

I was given atrial of Sativex which worked like a miracle can I have it ? can I*********** it cost to much.

Today I have recieved a letter from my Surgery asking me to make an appointment for a “Pain review” with the attached supporting litrature.

Dear MR Walton

Due to local government guidelines we are inviting you to come in to surgery for a painmanagement review with the doctor. What has the NHS to do with local government
I have enclosed the supporting literature to explain the need for this review and wouldbe grateful if you could bring this with you to your appointment.

Upon making your appointment please let the receptionist know it is for your pain

management review.

We are taking a look at how we Prescribe Pregabalin

Our surgery is currently seeing a****ll the patients who take the
medicine Pregabalin (Lyrica) for pain relief.

This leaflet explains why we are doing this.

Why are we reviewing patients on Pregabalin (lyrica)?

Due to changes in NHS prescribing guidance, our doctors are reviewing what we
spend on certain medications, in particular, treatments where there is a cheaper
but equally effective drug. Pregabalin is just one of the medicines which we are

Pregabalin is a very expensive medicine which takes a lot of money from the
surgery’s limited budget. Because of this we want to make sure that people who.
are taking it are actually benefitting from it. Equally, of course, we want to make -
sure that people who need it are prescribed it.

We have lots of similar medicines for nerve pain that can be equally effective and
can cost a great deal less. Some patients have never tried these alternatives so we
are inviting them to the surgery to discuss this option.

What will happen at the appointment?

Your appointment will be with one of our Doctors who will be familiar with your
history. We’ll have the opportunity to discuss if the Pregabalin is helping and see
if you have tried any of the alternatives.

What if I try an alternative medicine and it does not suit me? LOOK AT MY RECORDS YOU CAN SEE WHAT I HAVE TAKEN BEFORE

There is more than one alternative medicine that can be tried to control your
pain, if however you try a different medicine and do not feel that it is helping you
can stop this medicine and discuss with the doctors the options of trying another
medicine, or restarting Pregabalin if all alternatives have been tried. Prior to

stopping or starting medicines the doctors are happy to talk to you so we can
make sure the changes are done properly, either by telephone or face to face.

What if I want to continue Pregabalin & do not want to stop
it? Will this still be prescribed for me? GOOD QUESTION

We will review your medical record to see why you were prescribed pregabalin LOOK AT THEM I HAVE MS
and what other similar acting drugs have been tried. If you are taking pregabalin
after all alternatives have already been tried and this medicine suits you best we
will continue to prescribe it. If you have not tried alternative drugs, we would ask
that you co-operate with the Doctors and follow their advice by trialling one of .
the other drugs used for nerve pain.

Is this a money saving scheme? YES IT IS

If a patient can receive an equally safe and effective treatment for their condition
but which costs less money then it makes sense to try this. Changing from
pregabalin to another pain medication will save money for the NHS which can be
spent in other areas, such as operations and nurses.

Has anyone else had a similar communication from the GP or am I alone?


Modds can you please sticky

The article you link to is from 2010. The MS Society withdrew from the SCHEME - it did not withdraw its support for DMDs. Recent research can be found in the research section of this website.

Personally after 4 years on Rebif and 5 on Tysabri I can say they definitely work for me.


Hi,hmmm?Wonder what the outcome will be for you.

My GP has recently changed my statin from simvastatin to avorastatin.

The reason i was given was because it doesnt mix well with my other drugs.

So does that mean for the last how ever many years I have taken my meds, have i been harmed, or been less well than i should have been?

I questioned the action and was told its government guidelines `.

I`ll be interested to know what occurs.

luv Pollx

hi dave

makes you wonder if its worth being legal. look out for dodgy characters on street corners!

infuriating! and government guidelines? screw the sick? we should write our own guidelines for the government,

i’m all furious again so i’ll have to go off and have a rant where i wont be moderated.

isnt it funny how all the angry words begin with f?

fuming, furious, fannoyed, Fing livid, etc

carole x

In 2004 a government backed scheme was agreed with the various drug companies and NICE to allow specific drugs to be prescribed to MS patients.

At the time there had been negotaitons about what the drug companies wanted to charge and what the government were willing to pay. A number was agreed - circa £6000 per patient per drug. The four drugs in question were:-





However, a rider was attached to this agreement that the scheme would be reviewed periodically (I think two years - but I could be corrected) on the effectiveness of the drugs with the patients to whom they were prescribed. If the drugs were not found to be suitably effective the prie would be renegotiated or the drugs removed - whichever was more suitable.

However, it all got a bit lost and the review never happened for one reason or another, probably due a lot to a change in government amoungst other things.

Well this has come back to bite MS sufferers on the backside as now it seems the spotlight is on all MS drug treatment and it’s cost/effectiveness ratio in this time of cost cutting.

I did quick Google to find an article that related to this and came up with one from the Telegraph and one from the Independant here:-

It is important to note the MS Society is involved with the negotiations of these trials and now seems an unwilling partner.

And here’s an original article on the agreement.

The problem is, none of the drungs on the scheme met any of the targets for effectiveness, but the price reduction slipped through the net.

Worrying indeed.One thing that springs to mind …Is the GP qualified to make decisions on pain medication which is mainly targeted at Neuropathetic Pain? Is there any need for Neuroligists if GPs can prescribe meds which are now sanctioned by a neuro?This is what happens in Merseyside,but Walton Neuro in Liverpool is in my view ‘The Evil Empire’.

I wonder if the ACTUAL number of MS cases in the country will be revealed .Many people on here explained a few months back why the figure of 80,000 is an estimate.Cobblers.Anybody diagnosed is on the books(in the computer) of a PTC, unless they were diagnosed privately If they are transferred,or die the records are updated.I think the number is hidden 'cos the truth would reveal years of underfunding.The figure was 80,000 in 1958.Try and convince me nothing has moved on in 54 years.

If MS was fatal, things would be different,but those on expensive specific drugs are exactly who the drug companies need,and years of expensive drugs is wonderful.The relationships with various Governments over the years are complex and deep seated

I have it in writing from one of the world’s leading pain specialists that the trial that the last Government used to poo poo Sativex was flawed.WE LIVE TOO LONG and cost too much.Pain is invisible so nobody gives two shiny -hites,as Jim Royle would say.


ps The Mods cannot ‘Sticky’ anything which isn’t sanctioned by the MS Society

^ I should add a correction to my post above and explain that it’s £6000 per drug, per patient, per year.

How long before msers are not cost effective?



On cost effectivity…I’ve never had an NHS MRI,stopped copaxone after 12 months,'cos it did nowt to slow my ‘abseil into absurdity’,so at £5000 a year I’ve saved ~£15,000,and everything I’m on now is ‘Off the Shelf’,with nothing exotic.With £6K annually,they owe me ~£4k ish for the last five years say…Cash or cheque, I’m easy


This is primarily for MS43.
Hi Poll, the change in your statins is the exact opposite to the one they tried to pull on me a few years ago. I was switched from Atorvastatin (Lipitor) to Simvastatin (generic) after a visit from “a travelling pharmacist” to my Pharmacy. This made me feel very unwell within a couple of days, and after a phone chat with my GP, I was switched back. Note that this was at a time when the PCT was running in excess of £10Million in deficit, and the “travelling pharmacist” was employed by the PCT.

For things like this, I turn to the BNF as the Bible for all prescribers, and what do I find:
Generic Simvastatin is about 10% of the cost of Atorvastatin - so that explains what they tried to pull on me.
Atorvastatin (Lipitor) is around 60% of the cost of Simvastatin (Zocor), so I think that if you want to get back to Simvastatin, you should ask to be prescribed the Generic version. My understanding is that if a generic is prescribed, then that is all the pharmacy can charge for (i.e. regardless of what they actually dispense)

Going back to the question originally posed by Davew, this has a feel of a form letter, which you are not expected to read in detail, just to comply with. Do you know anyone else who is taking Pregabalin but who is with a different GP practice? If so, you could ask them if they have had the same letter. Then you will know if it is the practice trying to cut costs ahead of the change from PCTs, or whether it is the PCT (or the committee that replaces it). If it is the practice - and you really want to wind them up just a bit - ask them which part of local government issued the guidelines, so that you can contact the relevant councillor.

Of course, there really could be a local government involvement in this if Social Services are involved in any form of subsidy toward the Surgery budget. It could even be a simple as SS paying for a Social Worker to be embedded in the Surgery.

If you really want to push the Sativex decision, you might like to take a look at:
which suggests that the cost should be around £1000 per year.


Actually having done a bit more reading it’s actually £8,000 per drug, per patient, per year. So you need to revise your accounts there Wb.

However, what is more interesting is the comments in the article itself by the (recently departed/departing) Chief Executive of the MS Society Simon Gillespie. I’ve cut and pasted below my questions:-

This begs the following questions:-

  1. If increasingly the MS Society is not happy with the effectiveness of these products why are they still being offered to newly diagnosed patients? Does anyone actually have any information on the “Recent research” mentioned in the article?

All I can find is this which is American.

  1. If the MS Society doesn’t support the current scheme what will happen to the patients currently being prescribed any one of the four mentioned products if the scheme is withdrawn?

  2. Is anyone aware of any schemes inthe pipeline that will actually replace what is being currently offered?

A key feature of its design was that the price of the drugs would be cut if they proved ineffective.
However, there has been no price reduction over the past six years, despite signs that the drugs were not working.
Recent research results show that patients actually did worse on the drugs than if they were given a placebo.
Prof George Ebers, from Oxford University, one of a number of MS experts who have written articles in the British Medical Journal (BMJ) criticising the project, said: “The scheme may have been well intentioned, but perhaps the public interest would be served by an independent inquiry.”
More than 100,000 people suffer from the devastating disease in Britain.
Patients experience difficulty walking or speaking and there is currently no known cure.
MS itself is caused by the destruction of myelin, a fatty protective sheath surrounding the body’s central nervous system.
The MS society backed calls for the scheme to be abandoned.
Simon Gillespie, the charity’s chief executive, said that while it had given many patients people access to drugs it was “stuck in the past and has failed to take account of the most up to date evidence and practices.”
He added: “We are calling on the new government to work to ensure that people with MS across the UK have equity of access to the right drug, at the right time in line with current evidence.
“This cannot be achieved through the current scheme."
The four drugs involved Avonex, Betaferon, Copaxone and Rebif, cost around £8,000 per patient per year.
In 2002 they were rejected for use on the NHS by the National Institute for Health and Clinical Excellence (Nice), the Government’s drugs rationing body, because they were too expensive.
However, the following year the Government and the pharmaceutical companies involved agreed to start a “risk sharing” scheme, which saw an initial reduction in the price with the promise of more to come if the drugs did not work very well.
Around 10,000 patients in Britain are thought to have received the drugs thanks to the scheme.
A Department of Health spokesman said: "The risk sharing scheme has brought many benefits to MS patients including better access to drugs, a stronger network of MS specialists including specialist nurses and a better platform for MS research.
“We continue to monitor the progress of the scheme to ensure best value for money.”

Please stop implying that DMDs don’t work. I am not sure if this is what you are trying to do, but the way you are presenting your argument implies this, and this is a misinterpretation of what is being said by medical practitioners and the wider MS community. not cool.

I’m not suggesting anything, I’d actually like to read the recent research mentioned in the article but I can’t find it anywhere.

If anyone knows what this is or where it can be found please chip in.

jdog i agree with you totally but i refuse to get into another heated argument with EJC on this forum. Several people have been upset now and enough is enough and it is becoming very tiresome.

To any newly diagnosed people reading this i would like to say that my ms was pretty active before starting the dmd rebif. I have been on it 7 years. I have not had a relapse since. Therefore i would recommend them.

Not bad eh?..for something that does not work!!


Thanks,very enlightening and the fog begins to clear.I hope that whatever happens, WE don’t disappear under the paperwork as the lawyers,salesmen and politicians polish their Rolexes. What is the financial motivation for the drug barons to find us a cure? In my over-simplified world, once a cure is found it will be very expensive to buy if there is no need for continual dosage,or it can be priced at a ‘convenient’, and need continual dosage…Isn’t that now?

I don’t want to start a row over semantics,but in my little world,“Best value for money”,means cheap.The less money spent the better,as long as there is nobody getting ripped off too much.

Again here is proof that they donot appear to know how many of us there are.Simpleboy here can’t see how they cannot know the exact number of diagnosed cases.Answers on a Fiver please.I know a few people with ME and they say there are 250,000 diagnosed cases in the UK.Some schools of thought say it is psychosomatic.There is no real drug regimen and nothing like the costs of our DMDs.Diagnosis is something akin to a black art, and I reckon that because it is cheap everybody can have drugs of some sort.


Just for one moment set aside your personal prejudices of why you think I post and your reasons why you think I’m here.

Read the article in full, independent of any of my comments and absorb it. Here.

This thread is about one thing, the future supply of drugs based on a cost/effectiveness ratio.

The MS Society (the owners of this forum) have publicly withdrawn their support from the scheme that currently provides you with the drug that is providing you relief.

You have found the product which provides you relief, who am I to suggest that is no good for you? I’m not, for you it clearly works.

What will you do if it is found that the drug you currently use is no longer offered as it’s simply no longer cost effective? Does that potential not concern you enough to ask pertinent questions about it?

The article refers to “Recent Research” which seems to be the basis for the conclusions drawn by the MS Society and NICE. What is this “Recent Research”, I’d like to read it?

What will you do if your drug of choice is no longer made available by NICE for treatment under the NHS? Will you continue with it privately paying from your own pocket?

ignote him, hes the idiot who thimks hes the perfect authority on EVERYTHING and knows better than everyone here, hes not worth spitting on if he was on fire

We are going off topic a bit here. Let me pull it back…

I imagine someone who has tried many drugs available to them, and finally found one that works only to have it taken away by cost. Must be heart-breaking. Maybe im abit biased but if it works for you that must be more cost effective than waisting time with meds that dont. Im new to ms (only been dx 3 months now) an so far not needed pain relief etc, but have met many ms’ers who have tried standard drugs only to find that the expensive ones work for them. Maybe I dont know enough about the meds but if they are like cars, tvs and computers the more expenive the better they seem to work?

@Dave: this kind of thing is going on in all GP practices :frowning: Perhaps yours is being a bit more honest than some in being upfront about it? Pregabalin is more expensive than gabapentin, so I’m betting that’s what they are going to try and get you onto, if you haven’t already been on it. Personally, I will kick up a HUGE stink if they try and change my meds: it took me 4 weeks to get past the side effects of pregabalin and it is bloody WONDERFUL now! Amitriptyline, the super cheap alternative, made the skin on my mouth and throat slough off - cheap, yes, good for me, NO! I have some sympathy with the NHS, trying to switch to cheaper equivalents, but only where there is no cost to the patient. Unfortunately, I’m not too sure how well that bit gets factored in :frowning: Good luck! Karen x

@EJC: The cost cutting exercise is not restricted to MS. It is happening to everyone, with all conditions. It absolutely 100% has nothing to do with DMDs and I find it hard to understand why you would suggest that it was. Despite what you say, there is actually overwhelming evidence that DMDs work. The risk-sharing scheme was badly constructed and it is that that the furore was about all those years ago, not the efficacy of the drugs. Many journalists wrongly thought that the report said the drugs did not work. The MSS and other MS charities want DMDs to be more widely available, not removed! For clarity, there is robust evidence that DMDs reduce the number of relapses, reduce the severity of remaining relapses, delay the onset of disability, reduce disability, slow progression and extend life span.

You seem to be pushing an agenda that is unwelcome to many people who use this forum. The points you make here are out of date, have been shown to be unfounded and were discussed and dismissed on here years ago. Your repeated attempts to undermine DMDs is insulting to those of us who have had great benefit from them. Please desist.