We were prescribed this from a private consultation for 7 days, we went to our NHS neurologist today to get repeat prescription and he refused saying we will have to continue getting our meds via the private consultant. Our GP will not prescribe any more of them as they say they are not allowed to. Anybody else had this problem. We have now got to wait til next week and go to London to get a private prescription (round trip 150miles)
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Buprenorphine tablets
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Ephemera
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That seems ridiculous.
In Ireland, the GP can continue the prescription from a consultant.
Could you find a more sympathetic GP?
In UK apparently it is a red list drug only given by consultants even repeat. Any GP prescribing it can get into trouble
Pregabalin is ALSO a red list drug but the majority of GPs prescribe that without consultant's say so. Your GP is not prepared to prescribe because he's scared he may lose his licence if your husband takes an opioid overdose.I am so angry on your behalf.
My GP prescribes Buprenorphine. No consultant is involved at all.
Call Queen Sq. Explain it's an emergency and ask whether Prof. Walker or one of the team will issue an emergency private prescription.
In the USA its very hard to get GP's to coordinate with specialists, I don't understand this myself.
Additionally I learned that for us state law also dictates who can prescribe which opiates. There are different levels oof licensing. I know the UK has NHS, so best of luck.
KaarinaAdministrator
Can you not call Dr Dhanjal and ask for a script to be sent to you in the post? You could well find he is agreeable to do this. Worth asking anyway.
He could do but pills run out next Wednesday and he is not in til Tuesday, also no pharmacy local stock it so have to wait 24 hours. On a side note for others, some wholesalers are out of stock in the UK so there may be trouble getting them. Boots pharmacy has quoted 7 days min wait
Same problem in Ireland for availability of Oxycontin 10mg. Whole of Feb and March. 🥵🥵🥵
How on earth did you cope?
GPs ARE allowed to prescribe Buprenorphine BUT they choose not to because Buprenorphine is not licensed for RLS so if anything goes wrong, they can lose their licence.So GPs are scared & want a neurologist to say it's ok. It's disgraceful!
If I were you I'd set out a full, detailed, written complaint describing the hell your husband went through and the miraculous results he has had with Buprenorphine.
You should be able to get a private prescription sent as an emergency by digital means in the meantime. Call the Secretary at Queen Sq & say it's an emergency.
Buprenorphine is one of the cheaper meds to buy privately.
Ask your GP and NHS consultant why they refuse to prescribe oral Buprenorphine, depriving your husain of the only medication that has worked.
It borders on medical negligence.
Can you see a local lawyer to consider legal action for the appalling, negligent treatment youe husband has received so far?
Buprenorphine is prescribed off lucence throughout the UK.
Where are you? Maybe someone nearby has been prescribed it on the NHS.
GP said it is a red list drug ans no GP can prescribe it only a consultant. The N H S consultant says that as the private clinic first advised it they have to continue and he cannot be involved. Unbelievable what is happening. We are in the south of england. Problem is Dr Dhanjal on hols til next Tuesday.
The NHS consultant can EASILY prescribe it on the NHS. Sounds like he's miffed you went to some else who actually helped your husband.If he is the NHS consultant who misdiagnosed Parkinson's and caused your husband's RLS, he should be taken to court for negligence.
Different areas in the UK have different red lists where the drug has to be prescribed under a specialist. Clearly your local area has Buprenorphine as a red list item.
The NHS neurologist is being unbelievably difficult and contrary. You saw Dr Dhanjal in desperation because your husband was suffering appalling RLS.
The NHS consultant could easily prescribe Buprenorphine.
I would write/email and demand help. Especially if he's the neurologist who misdiagnosed your husband with Parkinson's.
You must be beside yourself with anxiety.
Try the NHS neurologist again and explain the RLS is now controlled. Call the Queen Sq neurolgy dept and beg for helo. Find a drug addiction clinic nearby and ask for help.
If your husband was a drug addict on heroin, they'd help him with Buprenorphine.
I'll be thinking of you and sending positive thoughts.
Another idea, do you know what might be as good to use instead of Bup if needs be?
Desperate times & all that. It is extremely unfortunate that your local health area has Buprenorphine on the red list and only neurologists can prescribe. I normally don't recommend Kratom as it's illegal in the UK, but the mistreatment of your husband has been so appalling that you have to help him. He will go into opioid withdrawal and his existing severe RLS will restart. That is unacceptable.So the only thing that will help in the meantime is kratom.
1 teaspoon when needed at night. Mix with orange juice.
Link below. It will be sent as Moringa herbal tea. They send quickly.
And video your husband when he goes into withdrawal and send to both the GP surgery and the NHS consultant who refused to prescribe Buprenorphine because a private neurologist had made the initial prescription.
I'm beyond shocked by such petty behaviour.
Hi, so sorry to hear of your dilemma, it really is ridiculous. I would be saying to your GP that your husband deserves some quality of life!!
In meantime do you have any other opioids in house? In emergencies I take codeine with paracetamol which helps settle things. Maybe GP might prescribe this?
Good luck
Yes to everything Joolzg has said. My GP has prescribed me the tablets, but refuses to titrate above 0.4 mg without consultant authorisation. I don’t know to what extent it helped my case, but I sent him links plus commentary notes on the MayoClinic recommendations on opiates and the Massachusetts General Hospital findings on dosages.
I also argued strenuously (but respectfully!) in two face-to-face consultations that in the absence of NICE guidelines on off-licence prescribing for RLS/PLMD then responsible doctoring should have the GP studying in depth any substantive, authoritative data available and then taking a view. Simply retreating behind the UK data vacuum in an over-abundance of caution might be seen as placing a doctor in dereliction of duty, which is, of course, to cater appropriately for the patient’s medical needs. I have a decent GP and so far I’m hanging on with my 0.4. Every good wish, Ephemera.
Another thought. Do you live near a drug addiction clinic? Heroin addicts are prescribed Buprenorphine.If you call your local clinic and explain your dilemma and that your husband will run out and go into opioid withdrawal, they may give you an emergency prescription to tide you over.
I'm in the States but this is similar to my experiences...I was abruptly cut off from methadone twice by 2 different clinics/doctors, barely lived through a night of withdrawal, and treated like an addict by multiple health care professionals.
I tried very hard to suss out protocols and avoid seeing uninformed doctors, but even so, things rarely worked out.
This meant drug testing and some docs even suggesting that I go into addiction programs and line up every day for my pill. Unbelievable!
I tried to get appts. all over the US, which took months. This is why I had to rely on kratom (thanks to the forum) and strongly resisted going back to prescription opioids. It was one of the toughest periods of my life.
I finally flew to Dr. B in CA and spent quite a lot of money to do so. Even so, I still have to worry about more expensive travel/iffy prescriptions. The new local doctor I found who would prescribe Suboxone has retired (of course!).
Hopefully these are the last years of things being SO difficult for RLS opioid users (and also for the chronic pain patients).
Familiar story.
One finally finds a sympathetic doctor who is willing to prescribe life saving medication only to have them move away or retire, leaving the patient back where they started… suffering whilst desperately fighting the ignorance of the medical system.
It really is a major concern for many of us.
So sorry that this story is familiar to you! I hope you are getting good sleep, as I wish for everyone on here.
Worst case-get some red vein kratom as a back-up, legally or illegally.
I ,too, had to travel to California to see Dr.B. After my PCP received confirmation from him, she consented to order Buprenorphine buccal films. I had to sign a contract that I would not abuse the drug. I have to contact her every month for refill.
So sorry to hear this. It is awful how patients are treated with this illness.
So you get to stress out every month, on top of everything else-ugh! I had that with one doctor an hour away from me, and sometimes he would say, very last minute, you need to come IN-make an appt! As my supply dwindled down, I never knew if or when I would get the refill, or what hoops that office would put me through. Then one month he just said he wouldn't give it to me at all. Just constant hell and worry.
You do have Dr. B for your back-up, at least-thankfully-but it is just not ok to put RLS low-dose patients through this.
This does seem crazy. I am on my first packet of oxycodone which my GP in the UK was quite happy to prescribe without me seeing a neurologist or a private specialist.I hope I don't have a problem getting the second packet.
By the way Professor Walker is going to be the guest speaker at the RLS AGM.
Unfortunately we are away in October.
Are any of you going to the RLS Society AGM in October in London?????
If so could you ask him about opioids please.
I’m having the same issue. Even though prof Walker wrote to them to say that he suggests targinact and my NHS can’t prescribe it even though they want to, as on the GP prescribing formulary they arnt allowed to prescribe it. It’s mad . I’m still taking kratom which works but isn’t legal here 😞
Have you tried to get Prof Walker to issue a private prescription for this?
that’s what I’m going to try next. I’ve got a private appointment with him next week face to face in london - so I’m going with hubby and will plead with him for a private prescription. I will let you all know how I get on. Let’s hope we can all get a bit of luck with this . Im sat here just finished work and my legs are going crazy now 😭
I am in the Uk and I emailed Dr B who suggested this drug. I forwarded the email to my GP. No problem with obtaining the prescription. I am now on Targinact which suits me better and is licensed for the treatment of rls. I had to educate my GP and worryingly my consultant in Plymouth who said, and I quote ' Oh well, you seem to be coping, I will call you in four months time !'
I am in the UK. My GP prescribed buprenorphin on my request, no problems.
I have never seen a consultant but followed advice from this forum and fed back to my GP. No supply issues in my area, so far
After all the discussions of who can and who can't and who will and who won't prescribe your medication, it seems your best immediate solution is to make that 150 mile round trip to London to get your medication.
Yes but it is a disgraceful position to be in. What if we cannot get there. He may have to go without.
I agree that the situation you are placed in is disgraceful. I was simply pointing out that in the short term, at least, you best option seems to be to make the trip to London for the medication. Then try to work out a better solution. In fact, if you make the trip to London, you could possibly work out a solution with the doctor there.
Agree, apologies if I seemed abrupt but lot of anger here at the moment.
Did you get a longer supply of Buprenorphine and if so, how is your husband getting on?
No further supplies so have to stop it. Cannot get a reply from Dr Dhanjal. Now on higher dose of Gabapentin per day and codeine, back to square one. One very angry husband. 👿👿
I absolutely despair at the appalling treatment here in the UK.I think you should write to the head of the Association of British Neurologists now & set out how badly you've been treated.
Also explain that low dose Buprenorphine worked. It works for many of us with severe RLS when all other drugs have failed.
Have now written to local healthcare trust and local MP. Although the last 2 night he has had about 6hrs sleep on just gabapentin and codeine so who knows!!
It could be that his D1 dopamine receptors are finally settling down. That is very encouraging. If his RLS continues to settle and possibly improve, he could slowly decrease gabapentin in the future and be back to how he was before his doctors misdiagnosed him.I really hope that happens.
Sadly, most gps in UK no longer prescribe buprenorphine. - you have to go to shared care( mostly used by ex and current heroin users) Then every 2wks see someone who has NO medical qualifications!I'm 'lucky' enough to have been prescribed lots before GP stopped. So currently using a small amount of those each day as I wasn't prepared to be in shared care.
Drs can prescribe buprenorphine patches and I think temagesictablets, 200 MCG each
I think it's an absurd situation
Good luck
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