Having spent time working with Dr Jose Thomas in Cardiff, I obtained a referral letter to my gp surgery recommending low dose opioids. I had a very good consultation with my gp who appeared to understand the desperation I was experiencing and said that she was going to look at a range of options including a referral to a sleep clinic and prescribing of the opioids. She said to give her the weekend to research it. I then heard nothing for 3-4 weeks. Having chased it up, it appears that she has referred me to the Royal London Hospital for Integrated Medicine which seems to be for complementary therapies and managed by local pharmacies. She said that the practice are not able to prescribe opioids due to the risks of tolerance and addiction (obviously I can refute this but it's unlikely that they will change their position).
Does anyone have any advice on ways that I could appeal or know any gp surgery in the Essex region (UK) who is prepared to prescribe them?
My gp practice employes the practice where you have make an appointment/treatment request on line in the morning (which very quickly expires as they receive the maximum requests for that day). They then respond to you by text and there is no way of replying to the text. You have to wait until you can get through on their system to give the information/response in another on-line appointment/treatment request so it is not easy to communicate with them.
Thank you
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Believer1234
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Dr. David O'Regan is a Consultant in Psychiatry and Sleep Medicine at the Insomnia Clinic at the Royal London Hospital for Integrated Medicine. Claire_1c saw him privately for £300 and he prescribed Targinact.
Thanks Sue - I have chatted to Claire who said that they consultant she saw gave her Targinet as a last resort and was trying to push her down the CBT route so I'm thinking that this probably will be a waste of time
Darn. I'm sorry that didn't work out! Another one I have is Dr. Mike Davies at Royal Papworth sleep clinic, Cambridge - will prescribe opioids including buprenorphine- recommended by DickJones.
I'm not in the UK but this is my understanding from Joolsg's posts.
Find nearest prescribing area where it isn't redlisted and find a surgery that prescribes opioids and ask to register at a GP. NHS rules allow you to register with any surgery as long as they don't have their own restrictions on who can join and they agree to take you.
Or get neurologist to issue a prescription on a green form & fill it at local chemist if GP won't prescribe it
I had a similar experience with the GP unable to prescribe what a consultant has recommended. One answer is to get Jose Thomas (I know him) to make the prescription for you. Email him or write to his secretary.
Thank you Tarsprayer. I don't think that he would be able to do it as I'm not in his area. He may be able to give me a private prescription but that doesn't help for long term
I feel your rage and frustration.I am so sick of the lack of knowledge and education amongst UK doctors.
Here's the Massachussetts Opioid study that confirms RLS patients do NOT experience addiction ( unless history of abuse!) or tolerance on low dose opioids. That is a completely different result to where patients take opioids for pain relief.
I also attach study on Buprenorphine by Dr Andy Berkowski, the co writer of the Mayo Clinic Algorithm and the new American Academy of Sleep guidance.
I can only suggest the old fashioned method of printing out the articles and writing a long letter and hand delivering to GP reception.
The Royal London won't have anyone with detailed knowledge of RLS.
Dr Jose Thomas is the ONLY doctor in the entire UK who I regard as knowledgeable on RLS. The majority of neurologists are still wedded to dangerous Dopamine Agonists.
Good Morning Joolsg. Thank you for giving me the links. However I'm just wondering if the Massachussetts Opioid study is the correct link as it doesn't actually say on the study that patients do not experience tolerance (i.e. augmentation) as it doesn't look as if the study went that far in terms of timeline? Thank you 🙂
If you look at the year by year reports, patients have stayed on the same low dose. Most had a small upwards adjustment in Year 1, but after that they have stayed on the same dose. That proves that tolerance hasn't happened.The study does say that an increase/tolerance is more likely to happen when patients experience PAIN with their RLS.
The study has been going for 6 years now.
There are a few of us on here who are in the study.
I have been taking 0.4mg of Buprenorphine for 3.5 years. No increase in dose. No tolerance.
I need some advice. To make a long story short, a friend went through augmentation on dopamine agonists, tapered off and Gabapentin was prescribed 600mg at 4 hrs and 2 hours before bedtime (total dose 1200mg). Additionally, hydrocodone was prescribed to relieve severe RLS and PLMD. Hydrocodone 10 mg ER was first prescribed but it didn’t work (not sure if the dose was high enough). Immediate release hydrocodone was then prescribed 10mg at bed time and one tablet 4hrs later if necessary. It worked beautifully for awhile. At first the hydrocodone produced somnolence which allowed my friend to sleep through some minor periodic limb movements. Now he stays awake, the periodic limb movements are more pronounced and he feels pain in his arms and legs. I’m accompanying him on his physician visits because of the lack of sleep, etc ….. he’s not thinking clearly. I’m wondered if he needs to get off the hydrocodone, switch to methadone or Buprenorphine and add something to help him get some sleep? Is Lunesta appropriate for RLS patients?
I was referred to the hospital for Integrated Medicine in 2013, it was tough enough getting there as I’m in Wales, and I was left very frustrated as Hugh Selsick pushed the CBT agenda from multiple sides. He did not even suggest RLS at the time although there was a mention in his letter that it should be investigated. I was supposed to have a polysomnography but could not due to logistics. It would have been under prof Matthew Walker who of course without doubt would have suggested DAs.
I was referred for insomnia and met with Hugh Selsick who dealt with it, but it all seemed very routine and as someone with co-morbid insomnia, I didn’t feel heard. I had rather high expectations that someone would finally understand my problems. Perhaps something would have come out of it eventually but like I said, I couldn’t go there more than that one time.
Not necessarily. I see Professor Walker annually. He wrote to my gp with advice to prescribe Buprenorphine in 2021. He has also organised Sleep Study and Iron transfusion.
I saw him and whilst he was understanding, his first line of treatment was gabapentin/pregabalin, second DA's up to 4mg and then opioids. I had to chase his referral letter for weeks and finally got a copy but it was never sent to my GP surgery. I was in the end happy about this as knowing my GP's, they would have jumped on the DA's!!!
I am in Essex & my GP issues me with Oxycodone on the authority of Kings College Hospital in London. The replacement of Ropinirole with this drug has been a game changer apart from constipation nightmares.
Could you tell me the name of the doctor at Kings College Hospital who told your GP to prescribe oxycodone and also the name of your GP that was willing to do so as so many doctors won't as I keep a list of those doctors in case someone else asks.
Prof Chaudhuri runs King's college clinic Sue!! You rememember? The top expert who wanted to inject apomorphine into patients experiencing augmentation.He will prescribe opioids BUT refuses iron infusions, disputing the evidence they help and I had to push and push for Buprenorphine.
King's College Hospital runs the only RLS clinic in the UK and the doctors all report to Chaudhuri, who is a PD expert. Probably why he's anti iron infusions and still pro dopaminergic drugs. I just hope he sees the light & starts to speak out against Dopamine Agonists.
I have had this horrible affliction for 55 years and only recently have I found a collection of drugs that actually work for me. It includes a mixture of pramepexole and an opioid Targinact. I touch wood every day because the relief has been life changing. I wake every morning hoping that it still works and so far fingers crossed. I take nothing for granted because I have had relief in short spells in the past but to get some relief is amazing. Keep going with the opioid direction and hopefully it will work for you.
So first off I'm going to do what Joolsg suggested and print off everything and leave it at the surgery. I'm going to negate their arguments about the risk of addiction (yes if it works, I will be addicted to the drug but only in the same way that one would be to any drug if it works for them) and the dangers of augmentation (research evidence and the fact that if they are worried about this, then they are in control as the dispenser of the drug). Oxycodene (let's not even worry about Buprenorphine at this point - baby steps!) is licensed for use for RLS and is not red listed in my area. Therefore they are failing in their duty of care to provide me with a drug that could enable me to live a normal life and would help prevent all the long term negative health risks of lack of sleep. I will also threaten to make a complaint to the GDC and seek legal advice as for what I see as a dereliction of duty. I hate to do this as I know that they they are only doing what they think is right but the GP that I saw definitely was open to the prescribing of opioids when I saw her and must have been blocked somewhere in the practice!!!
Use the word dependent not addicted. If you get targinact it only lasts 4 to 6 hours and if you don't take it that often you have mini withdrawals so be sure they prescribe enough for you.
I go private in London with the Sleep Clinic down Harley st. Dr Sara Mcnellis. My experience is that a GP will never prescribe an opioid without a specialist giving clear guidance to do so.
I am moving to Oxycodin from Pregabalin for 6 months to reduce tolerance and then will be switching back between the two, assuming it works the first time. I actually went into the meeting last week preparing to say a firm no to Ropinerol but she is aware of the change in the USA and said it is only a matter of time until it is mirrored in the UK!
The last 2 months have been hard so I can’t wait to get this letter to get the new meds. I’ve had 12 good years on Pregabalin but I am out of road….
Anyway, going private is not as expensive as you would think. If they do their job you hopefully won’t need to see them more than once a year. At £175 a pop it’s a very small price to pay for peace!
You can't just switch. You need to reduce the pregabalin by 25 mg every 2 weeks or you will have withdrawal effects. And you also can't just stop the opioid or you will also get withdrawal effects. A reminder when you start pregabalin again that it will take 3 weeks to be fully effective.
Also although you are on 400 mg or were 9 months ago it should work for a number of years before you need to increase it by another 25 mg and since the maximum is 600 mg depending on your age you might never reach that and if you do then you could switch to an opioid.
On Oxycodone it only lasts for 4 to 6 hours, so be sure your doctor prescribes enough so you can take it that often or you will get mini withdrawals.
Yes there will be a tapering off of both drugs. I’ve been told to get off within 3 weeks which I am aware of very fast. 25mg every 2 weeks just wouldn’t be fast enough at 400mg that’s 4 months.
I wish I had that long but my tolerance to Pregabalin develops much quicker the high it goes. I have to go up by 100mg each time and that will likely only last a year.
I just got the letter. So it is actually Targinact (Oxycodone/naloxone) which has a half life of 12 hours so I will assume I’d have to take twice a day. I’ll keep a diary on coming off Pregabalin which I am not looking forward too.
Hello Believer1234, I had exactly the same issue as you’ve described. I saw Doctor Thomas Privately in Cardiff even though I live in NW of England. Doctor Thomas couldn’t prescribe as apparently NHS Wales and England are not compatible. My GP refused to take note of reports and recommendations made by Dr Thomas. So having spent just short of £500 for consultation, tests, hotel and food I had to start over with a Consultant in England who was willing to treat my RLS with Buprenorphine. My GP was still unwilling to prescribe as he said there was no evidence that Buprenorphine worked anyway it wasn’t licensed. I receive a 3 months supply of Buprenorphine 7 day patches in the post from an NHS hospital.
I wish you luck and if you let the forum know your nearest city then I’m sure a member will be able to pass on the name of a specialist who will be able to help you as they usually have private clinics as well as NHS.
Thanks HipHop - how did you manage to get Buprenorphine from an NHS clinic as I thought you need to get these prescribed by a gp practice? What specialist did you go to? Was it a Neurologist?
Hi Believer1234. I saw a neurologist privately in England after the mess up with Doctor Thomas and Welsh NHS.
It’s highly unlikely that you will find a GP that will prescribe Opiates for RLS, even when recommended by a Consultant.
I saw a Doctor Christopher Murphy who is a neurologist at the Alexander Private Hospital in Cheadle, Cheshire and he then transferred me to his NHS clinic at Salford Royal Hospital near Manchester. As I explained he wrote several times to my GP who refused to prescribe Buprenorphine so Doctor Murphy writes an NHS prescription and I used to drive to the Salford Royal Hospital to collect the medication from the hospital pharmacy, that was a 3 hour + round trip in heavy traffic so on instruction from Doctor Murphy they now post it out to my home by special currier.
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Appointment with Robin Fackrell
New US CDC Guidance for prescribing Opioids ( finally )
Interesting update for those in the UK whose GP practice has Buprenorphine red listed
Neurologist appointment 
opioids
