Looking for a neurologist

[Faith_Hope_1]

My doctor has told me that he will prescribe Buprenorphine for me if I can get a neurologist to authorise it. I am having a really tough time with restless legs and want to come off ropinirol as soon as possible. I have also developed what appears to be preripheral neuropathy but it still needs investigation. As there is a long waiting list I have decided that I need to go privately for the first consultation and really want to find a neurologist who understands restless legs and will be willing to listen to me. Can anybody recommend one? I am in Dorset but am willing to travel. Ideally I would like to hear from anybody who has been prescribed buprenorphine by their neurologist. With many thanks and much hope.....

[Joolsg]

You could try Dr Robin Fackrell in Bath. I don't know of any neurologists nearer to you. He will definitely recommend low dose buprenorphine to get you off Ropinirole.

[Faith_Hope_1 in reply to Joolsg]

Thank you so much for this, Jools - do you know which hospital I should contact? Really appreciate your response.

[Joolsg in reply to Faith_Hope_1]

neurologyacademy.org/profil...

[Joolsg in reply to Joolsg]

finder.bupa.co.uk/Consultan...

[Faith_Hope_1 in reply to Joolsg]

🙏

[Mulberry100]

he sees private patient at the Sulis Hospital, Bath. NHS at the Royal United Hospital, Bath. I am seeing NH S Neurologist in Salisbury in August and if I don’t get any help getting prescribed Buprenorphine I will go privately to see Robin Fackrell. For me, it will be a case of getting my GP surgery to prescribe it. Good luck, hope it all works our well for you.

[Faith_Hope_1 in reply to Mulberry100]

Good luck to you too - hope it goes well and you manage to get what you need. Thanks for responding 🙏

[Munroist]

I saw Dr Fackrell privately at Sulis and he was helpful and receptive. Hopefully he will give you what you need for your GP to prescribe buprenorphine

[Faith_Hope_1 in reply to Munroist]

Unfortunately it appears to be red listed here in Dorset as far as I can tell from the drug formulary and I think that means that my GP won't be able to prescribe it. Thank you so much for the response 🙏

[restlessinlondon]

Hi, I live in Dorset too and recently had an appointment with a neurologist at Bournemouth Hospital through my GP. They are both happy for me to use codeine and the first thing the neurologist showed me was the opioid list from the Mayo Clinic (Buprenorphine is on the list)! Mind you, there was a long waiting list - I was contacted last October and told there was a 14 month wait but they offered me a cancellation recently. Hope you get the help you need.

[Faith_Hope_1 in reply to restlessinlondon]

Hi. Thank you so much for responding. What is the name of the neurologist you saw in Bournemouth? I live near there and am having to go privately for the initial appointment because I have the problem of restless legs and now an additional nerve issue. I need to see someone earlier for the sake of my mental health, although I can ill afford it! I have been looking at the drug formulary for Dorset and it appears that Buprenorphine is red listed here as far as I can understand. I haven't been able to find the Mayo Clinic opioid list that mentions Buprenorphine but I'll carry on looking. Many thanks 🙏

[SueJohnson in reply to Faith_Hope_1]

It is in the Mayo Clinic Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a...

[ChickenTwisty in reply to Faith_Hope_1]

Also in my postt yesterday (healthunlocked.com/rlsuk/po... the video on draft guidelines at 31:26 mentions that a high quality randomised controlled buprenorphine to be released soon, that has (and until release remains) lacking.

[HappyGreenBean in reply to ChickenTwisty]

Sorry are you saying buprenorphine doesn't have good trials to support its use?

[ChickenTwisty in reply to HappyGreenBean]

I was more highlighting that one was to be released, and implied it would show buprenorphine is effective. Such studies should make it easier to obtain effective treatment. But yes, the well recognised RLS expert does make that point around the referenced time point.

[HappyGreenBean in reply to ChickenTwisty]

Understood, thanks Chicken.

[restlessinlondon in reply to Faith_Hope_1]

The neurologist I saw was Dr G Rocco. Unfortunately he is not always working in England but you may be able to contact him for a private session.

Thanks to SueJohnson for supplying the link.

[HappyGreenBean in reply to restlessinlondon]

I'm unable to find this person, do you have a link to their practice website? Thanks.

[restlessinlondon in reply to HappyGreenBean]

I'm afraid not. I was referred to Bournemouth Hospital by my GP and Dr Rocco was the person I got to see. Maybe you could contact the hospital in case they can give you contact details.

[Claire_lc]

Dr Fackrell will almost certainly advise your GP to prescribe Buprenorphine. I saw him two months ago and he was very understanding and receptive. What I’d advise you to do in the meantime is check your GP practice’s drug formulary to see whether Buprenorphine is red-listed/restricted. I did this by Googling '(your NHS borough) drug formulary’, and it was easy to check online.

Unfortunately mine was red-listed, so despite Dr Fackrell’s letter, they refused to issue a prescription. Jools advised me to ‘shop around’ and find a surgery within commuting distance that has a different stance on opioids. I had to re-register with a practice an hour’s train ride away, but it was totally worth it. They issued the prescription without a problem, and the Buprenorphine has been miraculous. Zero RLS from the first night I took it. Some nausea (medical cannabis helped) but only for a few days, and now no side effects at all. I do only take 0.2mg - 0.3mg daily, so a higher dose might come with side effects that others on this forum can help you with.

Good luck!

[Faith_Hope_1 in reply to Claire_lc]

I think the drug formulary for Dorset has it red listed - as far as I can tell anyway. How did you manage to get accepted by a surgery out of your area? Did they prescribe the medical cannabis as well? I really appreciate your response - thank you so much 🙏

[Claire_lc in reply to Faith_Hope_1]

I told them I didn't live in their catchment area but did work there, and being able to see a doctor near my workplace was a lot more convenient. To be honest I didn't expect them to say yes, but they told me plenty of patients were out-of-area but worked close by, and they were fine with that. They didn’t even require proof of work address, although my plan was to say I worked in a co-working space.

You might have to call a few surgeries in an unrestricted area, as not all have capacity for new patients. I think I struck lucky, but with persistence I’m sure you’ll be able to find somewhere. Small amount of fibbing required but if there wasn’t such a postcode lottery, we wouldn’t need to!

I got the medical cannabis from releaf.co.uk - they were great. That bit did cost maybe £200 for the consultation and oil, but well worth it.