My GP still refuses to prescribe Bup even though Dr Fackrell recommended it and wrote to my GP.
I am still fighting the decision through Llais Wales.
I had a meeting this evening with a Dr J Campbell one of the practise partners and quite honestly after talking to him for over 30 mins he was not interested and even stated that Dr Fackrell does not outrank him which is hell of a thing to say about a specialist
He argued that if I went private I should remain private and not use the NHS for prescriptions.
He stated that Buprenorphine was only licenced for relief of pain and to ween people off opiods, not for Restless Leg patients.
I fight on and hope to go over his head.
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Gonzo123
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Oh I feel your pain , been there ,got the t shirt . Just keep fighting . I cant believe they would even question a specialist . I think I would be inclined to tell Dr Fackrell what he said ! The problem is ,once they have refused it and given reasons , its very hard for them to change their mind. I had the practice manager say they would prescribe it and then changed his mind . 3 months later I discovered they hadnt had a P Manager for 6 months . Work that one out !Good luck !
That's unfortunate. You used a private Neurologist because the waiting list for an NHS appointment is around 13 months & most GPs refuse to prescribe opioids without the recommendation from a neurologist.Buprenorphine is not licensed in the UK for RLS, but nor is gabapentin or pregabalin. But most GPs readily prescribe those drugs.
It sounds like this GP is chastising you for daring to challenge him. And having the cheek to go privately. Very unprofessional - and it's not considering your suffering.
I wonder if going on the Welsh NHS via Dr Jose Thomas would make any difference? I suspect you could see Dr Thomas at CARDIFF or Abergavenny at his clinic within 8 weeks. Dr Thomas could ask the local formulary to make Buprenorphine available for RLS.
I honestly despair at the behaviour of some GPs. I totally understand if their surgery rules do not allow opioids or drugs that are 'blacklisted', but this seems to be a personal grudge issue.
Thanks Sue that is exactly what I have done and he is going to issue one for me. He is also going to write a letter to my GP again but speaking face to face with the GP recently I don't think they are going to listen to him. They are so arrogant and know they will not back down. I will fight this to the bitter end now because of their uncaring attitude. If I then have to move to another GP then so be it. I have been with this practise for over 40 years and never had any dispute with them before. I hope Llais is now going to take up my case and at least give them stick.
hello - since restless legs are painful and the spasms experienced are also another way of experiencing pain - it can be argued that this in itself fullfills the requirements of prescribing buprenorphine. When I initially was prescribed the buprenorphine patch it was done on the basis of my legs being extremely painful. How can your Dr. Claim that one type of pain is more valid than another ? Maybe change Drs and go in with that argument from the beginning.
The Doctor is right in that the British National Formulary, which is the prescribing bible, does not list RLS as one of the uses for buprenorphine. As he says the only two official uses are pain relief and opioid dependence. Those people who have managed to get buprenorphine subscribed in the UK have done so either by luck or by approaching various practices to see whether they have a more flexible approach or are open to the overwhelming evidence from the US. It might help to provide details of your history so they can see that you have tried other options without success plus publications like the Mayo Algorithm but it's hit and miss at best.
Yes, i have read of people having opioids (including buprenorphine) prescribed for pain associated with RLS. It may have been in Australia, but also possible that it was reported on this forum i.e. by members in other countries.
I imagine that if you get it for pain they would only do so for a short period. You would then be in an awful situation regarding the RLS. All hell would let loose when it was withdrawn.
It was moreso a way of getting around prescribing rules. In the instance I'm recalling, it was for ongoing use. But you're right, if it was prescribed for short term use only, it wouldn't really be much good.
I am in Canada and lucky enough to have a neurologist that also suffers from RLS so he is sympathetic to my issues. He prescribes me tramadol and pregabalin and it has been working beautifully 🤞
Wow, amazing to have a neurologist that has RLS. I think that's what many on this forum wish for! Or at very least more empathy from their treating doctor.
Hi amrob, I'm on buprenorphine in Australia and when my GP rings for authority to prescribe, he states it's for 'ongoing severe disabling pain' (not exactly the words but very close) which has been reviewed 'in the last 12 months' as required by the regulations. I've been on it since 2020 and thankful it removes all symptoms. As someone else commented, who's to say the symptoms of RLS - which most certainly aren't a pleasant sensation, aren't pain, even if they are not the same as a kidney stone pain or the pain of appendicitis. My ex-neurologist certainly said I that what I was experiencing was pain.
I just had a phone call from llaiss Wales and they more or less stated that the GP has every Right not to prescribe so they cannot do anything. I am so angry that I cannot have a drug that literally cures me.
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