Hi guys i was hoping this hasnt been done yet and if it is i apologise.
I think it may be helpful if everyone with specialist help/clinics/Drs both NHS and private were listed here for us looking for help making it easier in one place?
if with the name we could share links and feedback this could be a huge asset to me and im sure many more.
Thank you.
While I agree that a list of UK RLS specialists would be desirable, the problem is that RLS is not taught to UK doctors or neurologists, NHS and NICE guidance is largely out of date, and many doctors seem to be resistant to research done outside the UK.
There are some UK doctors/specialists who know more about RLS than the majority, but only a very few who could be considered truly knowledgeable.
Kaarina Joolsg ?
There are very few with the knowledge to be included on the list. Even the ones we at first think are good, turn out to still be prescribing the Neupro Patch to patients that have augmented. Others refuse iron infusions or opioids.So, we really are stuck.
I personally would only recommend 1 doctor in the whole UK. Dr Jose Thomas in Wales, as he actually follows the Mayo algorithm.
I do sometimes recommend Prof. Walker, Dr Robin Fackrell and Dr Chris Murphy BUT with the caveat that patients must be firm in asking them to treat them with reference to the Mayo Clinic Algorithm and the new American Academy of Sleep Medicine guidance and refuse dopamine agonists when they have already suffered augmentation on Ropinirole or Pramipexole.
If I could just add that when I went to see a neurologist at Bournemouth he used the Mayo algorithm and indicated that his colleagues at the hospital did the same.
That is very encouraging. What is your neurologist's name?Any team that no longer prescribes Neupro after augmentation is worth adding to any future list.
I saw Dr G Cocco, but he explained that he sometimes works abroad. He kindly added details about RLS-UK to the information that he gives his patients.
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RLS-UK are unfortunately unable to provide even a very short list of RLS specialists in the UK for the very reasons that ChrisColumbus and Joolsg correctly point out in their replies to you.
Kaarina, Joolsg, rls-uk, have you considered sharing these few doctors with EARLS to be included in their expert-finder map?
At this stage Lotte, I would personally only add Dr Jose Thomas.Until the other doctors speak up about dopamine agonists and the scale of augmentation and ICD, I think we should wait.
I know King's College Hospital, the only RLS clinic in the UK, are STILL refusing iron infusions. They say they do not have the facilities ( they do!) & Professor Chaudhuri has said in writing that he has seen no evidence of its effectiveness.
I know that there are still specialists who switch UK patients to the Neupro patch and tell them augmentation is unlikely.
King's College Hospital tried to persuade me to switch to Neupro but, luckily, I had read Dr Buchfuhrer's book by then.
I suspect there are many doctors on the Earls list who are still not following the latest research and treatment.
Hi guys, thank you. Understood and witnessed it first hand, it really blows my mind how backwards it is regarding education on our condition, it gives me so much fear and sadness that i dont knoe how i and many others can get through.
I think and pray that once im off the DA my life will improve i just dont know how long it is going to take as its taking a lot longer than i planned.
I would definitely recommend Dr.Jose Thomas who works for the NHS at Nevill Hall Hospital in Abergavenny and privately from St.Joseph's Hospital in Newport.
Dr Murphy Neurologist Salford Royal Hospital on NHS also sees private patients. Very experienced in RLS
I believe that's the Dr Chris Murphy that Joolsg mentions above.
As mentioned above, I do mention Chris Murphy BUT he is known to prescribe Neupro Patch, so anyone experiencing augmentation has to be aware of that and be firm in refusing it.But I'm hoping he is now more likely to prescribe gabapentinoids or Buprenorphine.
Chris Murphy initially tried to get me to try Neupro but I told him I wouldn’t switch from one DA to another …. He was fine , initially prescribed Gabapentin but when I saw him again and explained it was not working he quickly agreed to Buprenorphine…. I have noticed on my NHS app that my GP has written to him to ask him to recommend something less addictive (without any reference to me) ….: I’m not happy !
I don't know if this is any help to you all but I was referred to the Sleep clinic at Guys Hospital where I was diagnosed with PLMS. This was in Feb. I am due a follow up conversation on 5th Aug. So it's a long long wait in between. With no treatement. The treatment suggested wasn't what you would all recommend (thank the lordy Lord for all you guys) so I guess I'm sayin DON'T go there!
You're probably talking about Dr Leschziner. Just be firm and tell him what you want.
I am under Guys Sleep Clinic and sadly I found this forum after I was switched to Neupro patches. However, they are open to persuasion and do want me to have an iron infusion. It is a long wait though. They have a specialist pharmacist who I am waiting to speak to in August. I will then work up the courage to come off the patches. I’m dreading it.
Recommendations please for NHS and private consultants in UK for RLS / Periodic Limb Movement / Sleep Apnea? 
consultants in the Uk to help rls
rls in other parts of body????
