In early January we invited those of you in England to complete the Neurological Alliance's survey so we could raise the profile of RLS. So far, ONLY 147 OF YOU HAVE DONE SO, so RLS is at the bottom of their respondent's list, making it look like it's not so much of a problem. PLEASE HELP US TO CORRECT THIS!
This patient experience survey is unique in gathering the views of people with neurological conditions across England about their experience of health and care services across the country and enables the Neurological Alliance to understand what’s good, and what’s poor, in people’s experience of local services.
If you live in England it is EXTREMELY important that you complete this survey. PLEASE. The results will be shared with NHS partners, including their commissioning services so it's a rare opportunity to raise the profile of RLS.
I’ve just completed this, maybe for a second time. It seems most sections were not applicable because I haven’t managed to get a referral to a neurologist.
My doctors have very limited knowledge of RLS relying on the internet as their source of information and guidance.
I’ve done it! It’s so important to let everyone know how dreadful treatments in England are ( or should I say aren’t) for RLS.
I receive excellent care for my MS- monthly drug infusions, constant blood tests, multi disciplinary team for urology/ proctology/ physiotherapy and appointments twice a year with a specialist MS neurologist and twice a year with a specialist MS nurse. I can phone the MS nurse anytime with questions / problems.
My RLS affects my life a thousand times more than my MS.
I waited 9 months to see an MS neurologist ( Kings College London ) and I wasn’t very impressed. I had already found the meds that helped by that time from advice on this site, emails from Dr Buchfuhrer and research.
It is not good enough. We are too English and need to start screaming for attention.
I’ve had 3 hours ‘sleep’ so am not feeling as reserved as normal.
Hi - I am sorry I didn`t see this request for a survey. Although I have a neurologist - he has referred me to a rheaumatologist??? I am not sure why as it was via a phone call from a nurse. I was diagnosed by this same rheaumatology department 10 years ago with fibromylgia, and restless legs was apparent then. My medication has changes many times from Amytriptiline/codeine/pain patches/pregabalin to ropinirole, which I try to keep at a low level. I also take baclofen for leg spasms and clopidogrel as they say I have had a Tia or maybe two? It is on Tuesday morning so I will post the out come etc. when I can. RLS is by far the worst of my symptoms and yet it feels so insignificant when mentioned?? It is so frustrating.
Keep positive everyone.
Thanks for highlighting this survey, I have gladly completed it. I do think that Health Services in the UK give RLS insufficient credence so we do need to speak out.
I wonder if this is the England Survey only, is there another one for (in no particular order) for Scotland, Ulster, Wales. If so, perhaps the links for these could be advertised.
Is this survey similar to the National Cancer Patient Experience Survey? (The questions are similar).
I know that data from the cancer survey is broken down into data relating to particular CCGs and Hospital Trusts and fed back to those organisations. I can confirm that the 2017 cancer patient survey did identify areas for improvemnt in Urology and Prostate cancer services provided by my local Trust/CCG. I know the Trust is responding.
It is worth completing the survey, it will make a difference.
Apparently, the "National" cancer survey is England only.
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Apologies, I just checked, there are cancer patient experience surveys for Scotland, Ulster and Wales.
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I'm not actually sure that THE Neurological Alliance is a part of the NHS.
As regards cancer there are numerous NHS Cancer Alliances throughout the UK per county.
There also appear to be numerous NHS Neuro alliances.
As far as I can tell THE Neuro alliance is a charity.
Excuse my ignorance, there appears to be no comparison between THIS survey and the "national" cancer survey.
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That is national England is a separate country as is Wales and Scotland. The north of Ireland is part of a country and part overseas dominion.
Nothing, well few things, bother me more than people calling Scotland, England, Wales and north of Ireland as 'the country' or 'across the nation.' We are separate peoples with different origins and our own languages. The Irish, Welsh, Scots and Irish along with peoples in the west of England are of Celtic origin whereas the English are of Norman extraction. It is fine to see us as a grouping but as Brexit has shown - this is one kingdom that is far from united!!
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I can see where you're coming from and apologies if I wrote anything you found offensive.
As you say, the "United kingdom" at least the larger part was only United originally and mainly because Elizabeth 1 didn't have children.
As you say, the peoples of these islands have many different origins. Even in the bit called England there are different origins, Celtic cornwall, norman, Anglo saxon, viking etc. Even the language is a polyglot.
At least, I never refer to myself as being "British".
Perhaps it shouldn't be called "Brexit" but "Engxit" which unfortunately doesn't roll off the tongue so well.
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No offence taken. It is just people who should know better calling 3.4 countries as one country! To me it is an attempt to get everyone thinking like the English - and that will not happen!
If they get it, it should be called KIngdexit as it is neither a British nor English thing as not only are they certainly taking the British countries with them but also us and since its the United Kingdom of Great Britain AND northern Ireland they would need to use the Kingdexit as its more appropriate.
Please everyone write something. I don't think it has to be a scholarly piece just a few very short answers to questions as I understand.
I am in Australia and I thought we had a mediocre system until I got involved in this forum.
I can go "doctor shopping" if I feel the need and quite quickly get some medical attention. Walk-in at many places.
When I was last in London I took sick and just walked to the nearest clinic and had to wait about an hour which I thought was reasonable but from what I read here some people have to wait weeks for an appointment and are restricted in which doctors they can see.
I think we in Australia and US will benefit if you guys can stir the pot a bit and get the government to realise that this disease is costing the country a large fortune in lost human energy, distraction by tiredness, probable injuries and deaths in single car accidents where the driver has fallen asleep and industrial accidents. I can remember having a real struggle not to let my eyes close and my knees buckle while "monitoring" some machinery. Try to stress the universal problem that doctors usually only know about drugs because the few hours they get in med school only allow for them to learn how to look up some procedure on what drugs to give for a "insignificant" disease like a few twitchy muscles or whatever it is that the patients are making such a fuss about. Of course they are better educated by the grease ball carpet bagger medical sales person who offers them a holiday if they prescribe enough Acme Snake Oil. They have to learn that there are other "cures" than the things someone can profit from.
If we can point to the UK doing well and having more research that perhaps confirming some non drug treatments and efficiently promulgating news about things like Augmentation then we might get a bit more money for research here and in the US.
Remember that if money comes from the pockets of Big Pharma it will be spent on long term, expensive treatments and not cures. I regard iron infusion as a cure for many people.
Anyway ultimately we probably have to get Government support for useful medical research in many areas but most importantly and, unashamedly selfishly, for RLS.
You can probably fill in the survey in less time than it just took you to read this confused tirade
I just saw 11000 members - say half active and a third in the UK
That's about 2000 submissions there should be.
Get off your backsides and fill in a survey for the rest of us who are disenfranchised just cos we live in the wrong part of the world - (and spending your taxes is not really any of our business)
UKers have an opportunity and a responsibility to the rest of us.
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