I'm relatively new to the UK, and struggling to learn how to manage my severe RLS through the NHS system. My main question is this: how are we supposed to manage if we have severe episodes and need to speak with a specialist in-between regularly scheduled appointments? It seems like seeking help from your specialist in between appointments is considered somehow breaking the rules, regardless of the severity of what you're going through or the urgency of the care you need.
To give context, recently, my medication stopped working and I was not able to get any sleep at all - literally. This started on a Friday night, and on Monday morning I called my specialist at Guy's & St. Thomas Movement Disorder Clinic. I spoke with his secretary, explaining the urgency of the situation; I've been through this many times before and knew I wouldn't get any sleep or relief until I was able to change prescriptions, which requires speaking with the specialist to come up with a new medication plan. The secretary said she would pass on the message, but by the end of the day I hadn't been called back. I called again the next morning, literally in tears, and was told that since my specialist only works at that particular hospital on Mondays and Fridays, and he hadn't found time to call me back on Monday, I would now have to wait until Friday to speak with him. She said there was nothing I could do except go to the GP in the meantime (who have openly said to me they don't have a good understanding of my condition and are unwilling to prescribe me medication specific to the condition). I explained all of this to the secretary and asked if there was a way to speak with the doctor sooner, and she curtly told me no - that patients "shouldn't bother the doctors with their so-called emergencies" when the doctors are working at other clinics. The week that ensued was a living nightmare. I did go to the GP, who could do nothing other than give me a few days' worth of sleeping pills to try and knock me out until I could speak to the specialist.
When I finally spoke to the specialist on that Friday, he seemed put out to be dealing with me, said that "we don't do urgent care here" and emphasized the same in the letter to my GP (which I received a copy of).
I am at a loss to understand how people with chronic conditions are supposed to get by under this kind of system. My next appointment with him isn't for another 3 months -- is the idea that I'm supposed to simply not sleep for 3 months until my next appointment? I am very anxious about what this means moving forward; even with the medication change, my symptoms are not under control I can see that there are going to be some rocky and acute issues in the months ahead.
How do you all manage when this happens? How do you get the specialist care you need when emergencies arise, within the NHS system?
Thank you for any advice and support.
Written by
ustouk1
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Really interesting post, I am having the same trouble and to be fair on the NHS they are stretched and I personally don't think enough research goes into RLS in the uk which is a shame.
Sorry to hear about your difficulty.
It must seem really harsh to you if you've been used to a health care system where specialists, I believe, see you if you, or your health insurer pay them. This is not so in the NHS and specialists give more priority to seeing people whose condition is more urgent.
I appreciate that you will feel your situation is urgent. I would agree with you as I've been in the same situation myself and I thought it urgent. However, the specialist will have other patients they consider to be more urgent I'm afraid. They may he right!
It would have been useful if when you first discussed your treatment with the specialist, that they had made a contingency plan for medication alternatives if the first choice ceased to work. This could have been included in the letter they sent to the GP and the GP could have acted on it.
Some GPs are now able to contact specialists by email. This is a recent innovation, so not all specialists and all GPs yet have this facility. If however you can convince the GP of the urgency of your situation, they might be able to phone the specialist.
The GP should be aware that there are alternative medicines for RLS and if they aren't, you could discuss some with them from your own research. Be aware however, that they will be highly unlikely to prescribe any opiate. If you find out about alternatives you can take that information to your GP. I have always found my GPs willing to discuss treatment.
The GP, and the specialist will largely be bound to the national guidelines on what they should or shouldn't do. These are issued by a government body known as the National Institute for Health and Care Excellence, (NICE). Here is a link to the NICE guidelines on managing RLS.
You are lucky in a way in that it sounds as if you see a specialist regularly. I have been treated for RLS for 10 years and I have seen a specialist 3 times. Each time a different one and each time I have had to wait months to see one.
Last year, I saw my GP because I was suffering augmentation and wasn't sleeping. She agreed to try and help me reduce my Pramipexole, but flatly refused to prescribe an opiate. She was willing to refer me to a NHS neurologist but said I would have to wait at least 6 months. She advised me to see one privately.
You could consider this. You would have to pay for a consultation which would be at least £80, more depending on who it is. The specialist could then advise the GP (NHS) what to prescribe.
Despite it's shortcomings, from a personal point of view, I am a great defender of the NHS. When I've really needed it, it's been there for me.
However, being dependent on public funding , with a limited budget and shortages of specialists and GPs it is struggling to meet all the demands on it. It is founded on socialist principles and is there for everyone that needs it, it is more there for those with greatest need.
I also believe you have to work with it, not totally depend on it which means being as informed as you can about any health issue you suffer and self-managing it as much as you can.
I do recognise that doctors may not fully appreciate the issues that RLS can cause, another reason I believe for you to be as fully informed as you can be.
If you were to say what medication you are currently taking, name and dose and what medications you've previously taken and also what problems you're currently suffering, members on this site may be able to make some useful suggestions.
I read you're not sleeping, however is this because you can't actually get to sleep because of RLS symptoms, or not the symptoms, but you can't get to sleep anyway OR you find you can fall asleep, but soon wake up again and can't sleep after that. These are issues people commonly experience, as I have.
I agree great reply Manerva, explains our NHS system completely. It cant be easy for some one new to the UK and our health care to understand, i mean we who have lived here for ever some times have a problem getting our heads round it all. And yes we need what meds have been taking are being taken, would be helpful for members to help where they can.
My recent medication summary is: I had major issues with augmentation, got IV iron about 2 years ago (but not allowed get it again because now my ferritin levels are too high) which helped correct the augmentation. From there I was on Gabapentin and slowly (very very slowly) weaned off of Pramipexole. In May I stopped the Pramipexole completely, and was on Gabapentin alone. That worked somewhat for a couple of months, but then about a month ago it stopped working completely. Cue neurological apocalypse. After I spoke with the specialist again by phone (see story in original post), he took me off of Gabapentin and put me on Clonazepam. I'm at .75mg daily and it isn't really working...and I'm scared to increase the dose, because I've been through the nightmare of Clonazepam withdrawal in years past and not keen to repeat. To get by I've been taking Zopiclone (a sedative) to just knock me out. But this is obviously not sustainable either, leaves me feeling drugged, and I doubt the GP will be willing to prescribe it again once I run out. I don't want to go back on any of the DAs because I've just barely recovered from augmentation. So really feeling out of options, panicking that there's no help to be had.
I also forgot to mention that for some unknown reason that no doctor has ever been able to figure out, opioids have no effect on my symptoms whatsoever. So that category of medication is also not an option.
You dont seem to have many if any med options left. As a suggestion you could email Dr, Buchfuhrer a RLS expert in the USA, alot of us email him regardless which country they live in. Give him details on what you have tried and what hasnt worked for you, he MIGHT have some ideas for you to try. Its along shot, but i always say nothing ventured nothing gained. You can read other peoples emails sent to him and his replies, will give you an idea on how to approach your situation. rlshelp.org look for the little yellow email box.
Thank you Manerva, I appreciate your thoughts & especially the advice to have the specialist prepare and send over a contingency medication plan to the GP. I will definitely look into that. I've had RLS since I was 19 years old, and am at the most extreme end of the spectrum (as it seems many others on this forum are as well). I've gone through periods of self-management before, when I was working overseas on a humanitarian response where there were no specialists. But the results, even as a well-informed patient, were not good. I was so burned out from consequences from the lack of proper care that I had to leave my overseas posting, and moved here with my (British) partner. I fully understand that budget constraints are wreaking havoc on the NHS system and have much sympathy re: the impact of all of these privatization and austerity measures. I'm just trying to understand how people with acute chronic conditions are meant to manage in between appointments under the system.
Is there really no other option than waiting until your next appointment? Are there no specialists out there who see their patients' health as their responsibility full stop (rather than just during appointments)? (This is how it is viewed in the US - I could always get in touch with my doctors directly even in between appointments, and they would help me because I was under their care and therefore they saw any related acute issues I had arise as their responsibility).
My symptoms are so severe that when not controlled, I can't go work, can't get out of bed/off the couch all day, intense body soreness from the hours of essentially convulsing 2-3 times per minute all night, often get ill from lack of (i.e. literally none whatsoever) sleep for days or weeks on end, etc. I have to be on medication every single day, and if that medication stops working, my whole life grinds to a screeching halt until I change medication regimes, in a way that isn't sustainable for months on end. I've had augmentation in the past and am scared of ending up back there again because of further forays into self-management. My ferritin levels are already very high so I'm ineligible for IV iron, I don't respond to opioids, have other autoimmune issues that also intersect, etc. I'm a complicated case and I don't feel qualified to navigate it on my own. I'm also planning to become pregnant in the next couple of years, and will need careful guidance on how to prepare for & navigate that from a medication & risk perspective.
Have people found specialists (I'm in the London area but willing to travel) that are more responsive & responsible? Has anyone found going private to make any difference? I'm really just looking for any tips or advice to help me make this work. Thanks again to everyone.
How awful! Your case does sound extreme and complicated. Opiates are used for refractory RLS, but that's not an option for you.
Self-management doesn't necessarily mean do everything for yourself. It means doing those things that you can do whilst being treated at the same time. It means knowing about your condition about the medication and also means using your own coping strategies.
Sorry to hear you augmented on Pramipexole and that Gabapentin stopped working for you.
It may be that you need to try a DA again, I have read that slow release DAs are less likely to cause augmentation, and that Rotigotine is less problematical than Pramipexole. Also, a DA can be combined with Gabapentin or perhaps Pregabalin which is more potent.
Overall, as Elisse says, it may be best to contact Dr Buckfuhrer, who advised me that a DA and Gabapentin can be combined.
I have met some people who have a "special relationship' with their consultants, but they usually have a serious chronic condition that can quickly become life threatening.
I am currently under the care of a urology specialist and have been told I can ring her secretary at any time. Which I have done to get information about a CT scan. Neurologists, I think are rarer and some of the cases they deal with are very serious and I guess, they are simply not that available.
Like you i tried to talk to my neuro Dr and was told rather rudely by his secretary i have to wait to see him ggrr your lucky you only have wait 3 months my next appointment isn't for another 6 months (even though he knows i sleep on avg 6 to 7hrs a week) but even then it'd be a waste of time cos i'll get the usual "we've tried everything" see him all but 5 mins he knows sod all about RLS he mainly deals with Parkinson's . Good luck hope you get somewhere soon
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As a suggestion you could email Dr, Buchfuhrer a RLS expert in the USA, alot of us email him regardless which country they live in. Give him details on what you have tried and what hasnt worked for you, he MIGHT have some ideas for you to try. Its along shot, but i always say nothing ventured nothing gained. You can read other peoples emails sent to him and his replies, will give you an idea on how to approach your situation. 
Doctor visit a bit disappointing
How reliably does NHS retest Blood iron levels after IV Iron?
First Neurology Appt.
Suggestions for first neurologist appt 
My Doctor really doesn’t seem to understand
