So Ive just changed Gp's after 50 yrs to get Buprrnorphine. They knew exactly what drug I wanted BEFORE I joined and they said generally fine with a consultants letter . A week on and guess what " cant prescribe that its not licensed ". I am seething and waiting for a call from the practice manager that I have requested. When is this situation ever going to change ? I cant take much more
Buprenorphine battle: So Ive just... - Restless Legs Syn...
Buprenorphine battle
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Huntingleroy
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Oh my word. How utterly incompetent.No it's not licensed. Nor is pregabalin, nor is gabapentin.
GPs are able to prescribe off licence, but what they usuallt mean is they are scared they may lose their medical licence if you OD. But hey, if we kill ourselves because life with untreated RLS is unbearable, that's fine!!!!
If it's red listed they can refuse, but if not, they should listen to your specialist.
Have you tried writing to your MP? If he or she is any good, they may be able to push to get the Buprenorphine prescribed.
I despair.
No I hadnt thought of MP. It is red listed in Gloucestershire but I will bring up the Gabapentin when they finally ring me
Can you register to a GP surgery in a neighbouring county, where it isn't red listed? You have to sign a form saying you agree they can't do home visits, but as most surgeries no longer do those, no loss.It will involve a monthly car/train journey to pick up the NHS prescription , unless they can send it direct to a named pharmacy. But you'll probably have to get the prescription out of county as well.
I had no idea how difficult the NHS podtcode lottery was until recently.
Its finding out which county isnt redlisted , thats the problem . Ive contacted a few more Gps tonight but wasting my time Im sure. Most pratices say you must live in the area
I am so, so sorry to hear that and you are not alone. What IS it with these people ? Are they cruel, stupid or ignorant ? The entire situation causes despair and I hope this can be resolved soon.
The answer is they dont know what its like to live with Restless legs
100%.
so true. that health problem is named incorrectly. some of us have full body spasms so horrible you don’t want to go on. any medicine that helps should be allowed. i guess they are worried about improper drug use. well, you don’t go to a doctor for a high!!!! you go for help and there are medicines that help !!!
All of the above!
This is too awful, especially knowing how hard you’ve worked to get this far. Take a deep breath and concentrate on getting the outcome you want. It would be so understandable to want to rant and rage at the practice manager, but maybe if you can get them onside, it would help swing it with the partners.
Can you mention how many people you know whose surgeries willingly prescribe Buprenorphine with a consultant’s letter (and ongoing monitoring). None of us has ever come to any grief on the tiny doses we’re prescribed.
I’ll be thinking of you and hoping to god the practice manager is a sensible person.
Let us know how it goes.
The decision is final Im afraid .Do you happen to know how many people are on it in the Uk ? Something else I can use in this constant battle . I have a Gp friend and he said I might have more luck with patches but they are saying no to that as well !
Easiest way to get it is to smoke a view joints of heroin, go see your doctor and say youre addicted to it, blood test will show positive for heroin and say the withdrawals are too painful. Dr will refer you to local drug help centre where their Dr will happily prescribe buprenorphine. 😊
Sadly thats very true !
Oh, my dear Huntinglory. I’m not surprised you’re spitting feathers, how the hell can your new GP Surgery in one breath say they understand the medicine and in the next breath say, sorry, it’s not licensed. What a surprise as aparantly none of the other Opiates used to treat RLS are Unlicenced in the UK and are more readily prescribed by GPs. Talk about stick twist or bust and go away and get used to your RLS as no matter what we may tell you we were only joking.
Good luck HipHop1972 🤯🤗
I just cannot believe this. You really could do without further stress.So sorry and like Sue I agree with everyone's comments.
Yes its an absolute joke except its not funny .
I think we all agree about that!
I wonder would they prescribe it if it were recommended by a specialist? Dr.Jose Thomas prescribes buprenorphine. He practices for the NHS as a sleep specialist. He also works privately from St Joseph 's Hospital Newport.Not too far from Gloucestershire.
Sadly, he can't prescribe to patients in England, because Wales is under a separate NHS system
I understand that.I live in Wales.I meant that if he recommended it would the gp prescribe.
Sadly, her GP surgery absolutely refuses, even if specialist prescribes/recommends.It's very worrying for those living in areas where it's red listed.
It means we have to move or register in a GP surgery in a different prescribing area, where it isn't red listed.
That's fine if it is within an hour's drive/train journey, but otherwise very difficult.
Thanks for your long msg. My neurologist has prescribed twice now a Nhs script but its such a battle for me to get it. Endless emails , phonecalls and its just stressfull tbh. I found out today that 15 miles away as in the next county Hereford and Worcestershire Bup isnt red listed ! Ive got written proof from a Gp there so Ive sent it to my new Gp saying that a postcode lottery is just not acceptable. I also said I would happily sign a disclaimer. Sadly the next county wont take me on as too far away. Ive also asked my new Gp about patches as they arent on the red list. I wont give up ! I will keep you posted.Ive also contacted a private Gp , dont really want to pay , waiting for a reply .
Patches may be next best option, BUT many report that they run out early & stop working, so discuss that as you then get RLS AND opioid withdrawal symptoms.Also keep ringing GP surgeries in Hereford. One may be willing to take you on as long as you agree that they won't do home visits.
I really hope you get a result.
It has been beyond miraculous for me. Sometimes I actually wonder if I still have RLS!
Hi Huntingleroy, what a farce, I saw a specialist privately not to far from me and he prescribed Buprenorphine 7 day patches. He gave me an NHS prescription on Friday and he is writing a polite but strongly worded letter to my GP Surgery stating that he sees no medical reason for their refusal to prescribe Buprenorphine as they had previously prescribed Pregabalin which is also not licensed by NICE. So will see if they still refuse. I placed my patch on Friday evening as directed in the instructions, today is Sunday and so far no discernible results but guess early days, no side effects either.
There is a Doctor Robin Fracknell in Bath and that’s not to far from Gloucester but maybe your current specialist could write a strongly worded letter to your GP Surgery, it may work.
Regards HipHop1972
Maybe you need the tablets instead,mine worked from night 2 and Im still in shock ! Ive even booked a flight abroad! I take a 0.4 mg sublingual tablet. Yes Ive seen Dr Fackrell in the past, he put my Ropinirole up to 6mgs despite me saying I thought I had augmentation . Say no more ! Are you hoping your Gp will prescribe now ? My Gp wrote a very long email explaining why they could not prescribe Bup under any circumstances. This postcode lottery is absolute madness
Hi Huntingleroy. You may be right about tabs, we’ll see haw it goes, Doctor Murphy is on holiday until next Monday so can contact him then. Really shocked re Doctor Fracknell putting Ropinirole up to 6mg, that was what I was on for a couple of years before max dose was restricted internationally to 5mg for RLS. It’s all like a game of snakes and ladders but the trouble is these snakes bite.
Good luck HipHop1972
They certainly do !
Hi Huntingleroy, need to correct something I said in last post. Ropinirole is restricted to 4 mg now not 5mg ass I said. Let’s just keep away from those passkey snakes.
HipHop1972
Hows it going with the patches ? Any relief yet ?
Hello my dear Huntingleroy, I’m sorry to say that there hasn’t been any change yet, but one result is my knee pain that affects my walking comfortably has virtually disappeared ha ha. So when legs are bad I can now walk twice as far 🤣
I think I’ll try to change to pills if the strength of the patch can’t be increased but like the patch as spin off with knees is great.
Kind regards HipHop1982
Hi Jumpey, I saw Dr Thomas at his Cardiff but because I don’t live in Wales he wasn’t able to prescribe Opioids but wrote to my GP with a recommendation listing medication. My GP flatly refused to prescribe any of them as they are not licensed and not approved by NICE in England. So had to start again with an English Consultant. So i believe Huntingleroy is in exactly the same position that I was in.
Regards HipHop1972
It's so distressing.
in the UK medical system, can you see whoever you want if you pay cash? Can you easily move to another doctor or go to another doctor in a different area who will prescribe what you want? That’s what we have to do in the states.
No. All GPs, or PCP are under the NHS. There are private neurologists and private GPs. Private GPs cannot prescribe 'controlled' drugs, like opioids. Private and NHS neurologists can recommend Buprenorphine BUT the decision to prescribe it has to be the NHS GP.
Occasionally, a private neurologist can write an NHS prescription, on a green form, and we can use that to obtain Buprenorphine. But usually, they rely on GPs to write the prescription.
It is very confusing and difficult to navigate the English/Welsh/Scottish healthcare system!
One lady in North London has registered with an NHS doctor in South London to get a prescription of Buprenorphine. The same city has at least 5 different prescribing authorities, with different rules. Buprenorphine is 'red listed' in North London but not in South London. We are 10 miles apart.
It is madness.
Oh my. Sounds like madness. Although from state to state and pharmacy to pharmacy, we might get push back on certain drugs. But as far as docs, we can just pay out of pocket and not use insurance, however we choose. I’m doing it twice this week, which is pretty costly.
Interestingly Jules , I contacted a private Gp where I live explaining in great deal that I need Buprenorphine tablets. I had a reply from secretary saying she had spoken to one Gp and he said it shouldnt be a problem so to make an appt to see him. I cant help feeling that I will pay my £125 upfront to be then turned down . Sadly I have become quite cynical since changing Gps to no avail !
I would definitely say to the Secretary that you will not pay the money if the GP is unable to prescribe a 'controlled drug.'I actually went into my local GP private surgery to ask if they could prescribe Buprenorphine. The secretary said no. They cannot prescribe 'controlled drugs' like opioids or gabapentinoids.
Yes I think that will be the case for me . I dont think my neurologists secretary has any idea how stressful this is . If she at least acknowledged my email it would be a step in the right direction .I will ring this week , I can just hear her sigh when I say my name !! If I wasnt going on holiday it wouldnt be quite so urgent . The thought of a flight home without meds makes me feel both physically and mentally ill. I quoted withdrawal symptoms to her last time ! I presume a consultant cant send a script electronically to a designated chemist like a Gp can ? Thanks again for your continued care and advice .
The battle continues to consume my life ! No Gp in the next County will let me register as Im out of catchment. Have asked my consultant to issue another script so now for the waiting game ! Can a consultant who works privately and for the Nhs not send an electronic prescription to my named pharmacy ?It seems ludicrous if they cant in this age of technology !But then what do I know .......
I honestly don't know or understand how it works. Clearly nor do neurologists.I would hope a neurologist can send an electronic script to a named pharmacy.
It's a complete, confusing mess.
Someone pointed out that I cannot move house in the UK because I may move to an area where Buprenorphine is red listed.
Excuse my French, but it's utter Bollo#£s
It certainly is and quite frankly Ive had enough. How long does it take to write a prescription and tell me where to collect it from ?Ive basically exhausted all routes now .Might try a few more Gps here tomorrow but wasting my time Im sure
Ive just written a VERY long email to my new Gp who had said they would prescribe with consultants letter. Ive been waiting a week for the Practice manager to call me as I had complained. I quoted that Gabapentin isnt licensed for rls but they happily prescribed that ! It was my final begging letter,worth a go ! Probably be asked to leave but no big deal!
Gawd. I really hope they will now prescribe. Keep a diary so you can compare before and after and then send to all the surgeries that have refused to help.It is cruel and barabaric.
I know exactly how you feel. I was in a battle with Prof. Chaudhuri 3 years ago. He kept saying Buprenorphine wasn't licensed, there were no studies etc. Eventually he said he had 'no objections IF my GP would prescribe'.
And now King's have said they can't do a trial of Buprenorphine because they don't have the staff or time. Mmm. But they did want guinea pigs to trial intravenous apomorphine ( an early DA) on people suffering augmentation! That didn't go down well!
So did your Gp play ball game and prescribe ? Dr Chaudhuri diagnosed me over 30 yrs ago ! Kept me waiting over an hour at 9am but never said a word and that was private ! Mind you they all seem to keep you waiting in my experience !
Thankfully yes! A young, female GP who read the research I sent her.
Could you send me a couple of links re research that I can send out . Ive pretty much exhausted every Gp surgery around !
neurologyadvisor.com/report...
massgeneral.org/assets/mgh/...
my.clevelandclinic.org/depa....
neurologyadvisor.com/report...
academic.oup.com/sleep/arti...
Thank you . Ive found a Gp practice that review unlicensed meds , so it should be tomorrow when they review it. I sent a pleading letter, your evidence and my neurologists letter so cross everything !
Tell your GP there are now several of us who have switched and we're not addicts. We haven't increased the dose. I'm happy to chat with them! Show them this interview of me done by a BBC film maker.
youtu.be/hnTKtp5PZGo?si=-dy...
Thank you Jules , lovely to actually see you on film . I still cant believe they want me to register with them before they decide ? Surely thats utterly pointless? But there again I expect they get pennies for a new patient !! Telling them I worked for the Nhs all my life doesnt help either sadly...
It is beyond rational explanation. Cruel, barbaric & backwards. Treat the disease properly and you reduce economic burden on the NHS, reduce comorbidities ( heart disease, high blood pressure, stress, anxiety, depression) and substantially improve quality of life.
It is a "no brainer" but some doctors are too short sighted to see that. What are they afraid of? That we will die? They're already killing us/shortening our lives by their appalling lack of knowledge and treatment.
It really is time for the tens of thousands currently experiencing augmentation to rise up and demand better care and treatment.
Heard today my neurologist has agreed to do a script this month , Im reading that he wont do it much longer which is crazy , wheres the patient care ?? I found your article very interesting ,when I was really suffering my whole body felt agitated from top to toe , I would want to pass urine constantly at night although nothing there, I itched and would bite my nails til they bled. I told consultants etc but met with abs nothing . When will we be heard ?
Whaat? So is this a trial to see if it works? If it does, will he then send you back into nightly torture? I seriously do NOT understand.
Write to him, your GP and all the parliamentary candidates standing in the election to demand help in getting effective treatment, as per RLS-UK website and Mayo Clinic Algorithm. You can say that RLS-UK are campaigning for better treatment, for dopamine agonists to be relegated to last position ( and hopefully banned) and for iron infusions to be first line treatment and opioids to be prescribed for refractory RLS.
So my case was discussed at a local Gp today but of course the answer once again was no despite me sending so much info . Hopefully I will get a prescription next week from neurologist but its like pulling teeth .Ive said Thursday deadline as Im going abroad. Ive asked if he could 2 months worth but Im not hopeful . Once Ive got it Im going to email and say that all the Gps are saying he needs to carry on prescribing it for me but that I cant go through this stress every month trying to get it. Its utter madness. Depending on outcome I may go and see Dr Murphy in Manchester , Ive left his secretary a message today. Will update you next week .
I will keep everything crossed for you.
Ihad the same problem and I live in the US. The PHARMACIST refused to fill it because it was off label. They didn’t care that Pregabalin, Gabapentin, any other opioid, Dipyridamole, low dose naloxone are also off label. My specialist had to call, then he had to provide literature, and then they thought some more. I didn’t let up on anyone and finally got it authorized. I’ve had a few minor issues since. As I only take 1/4 of a 2 mg tablet at bedtime, a 30 day supply lasts 4 months, and they still freak out. More education of MD’s is so needed.
Hi ,have you found your pain points which set this off🤔
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