REMINDER TO START WRITING LETTERS AND SPREAD THE WORD
RLS UK has kindly agreed to support a campaign for education of GPs in the UK and has approved the template letter for all UK members to send to the organisations/bodies listed below. The letter should be personalised to tell your own story about treatment (or lack thereof) and side effects and how RLS has affected your work, social and family life. The Association Of British Neurologists has been very helpful and pointed out there is a shortage of neurologists in the UK and that most RLS patients will only ever see a GP about their RLS so GP education should be the first priority.
The letter should be sent between mid June to the end of July 2021 by as many members and their families and friends as possible to the following:
6. The new NHS curriculum is currently being worked on and the NHS is asking its members for comments. We should send letters to them as well.
curriculum2021@foundationprogramme.nhs.uk
If you're a member of other RLS help groups in the UK, please ask for others to send letters at the same time.
I am also in touch with a journalist from the Independent newspaper and a health journalist at the BBC, both of whom have expressed an interest in covering the campaign and publishing "lived experience" stories. However, there's no guarantee they'll publish as other major world health issues ( Covid, long Covid and vaccine side effects) are taking priority.
TEMPLATE LETTER ( Copy and paste)
RLS
RLS is one of the most common neurological diseases in the UK, affecting approximately 5% of the population in varying degrees. It has the highest economic impact of all other neurological diseases combined and the highest suicide rate. It causes severe sleep disruption and has a major impact on social, family and work life.
RLS UK has carried out research which has confirmed that this serious disease is not taught at medical schools or during GP training in the UK. As most patients will only ever see their GP (and not a neurologist) about their RLS, it is essential that this serious neurological disease is taught in depth.
[PERSONAL EXPERIENCE
Insert 2 or 3 short paragraphs about your personal experience with RLS, setting out when and how you were diagnosed, what medications you have been given, what side effects you have experienced, including Impulse Control Disorder or Augmentation with Dopamine Agonists, whether your GP increased the dose of your medications or advised about side effects. Explain how RLS has affected your home life (lack of sleep, inability to share bedroom with partner), work and social life. Has your GP advised stopping dopamine agonists without a sensible withdrawal schedule or not known how to treat Impulse Control Disorders or suggested your symptoms are psychological/not serious?]
I am now asking for RLS to be taught in depth at universities and medical schools and as part of GP training in the UK. The training must include the benefits of lifestyle modification and raising serum ferritin through treatment with iron before medication is considered and the possible complications from treatment. In particular, future doctors need to learn about the management of augmentation and withdrawal with dopamine agonists and the medications that worsen RLS.
There is a need for more research into this common, serious neurological disease and we desperately need more neurologists to specialise in this area.
It is unacceptable that the vast majority of RLS patients know far more about RLS than the GPs and neurologists treating them.
I look forward to hearing from you,
Name, Address, email.
Written by
Joolsg
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As an additional point, it might be helpful to put " ( Restless Legs Syndrome or Willis/ Ekbom Syndrome/ Disease) just after RLS, at the top of the page.
If I had my way it would be called Willis Ekbom because RLS makes it sound so trivial. Several people on my MS Campaign course had never heard of it and when I explained it was worse than ANY MS symptom ( and I have had them all) they were shocked and suggested changing the name. If only........I think we have to accept that a the medical authorities use RLS and will object to any change. Sigh...
I'm perfectly happy with the Restless Legs name. It's just that some - even learned medical bods, may not understand what the letters RLS mean. But a great and extremely necessary campaign.
Could it be extended to Ireland?
I wonder do we have any influence at the top table!?😜 Must be a tribesman somewhere around!!!🤔😝
Hopefully things will start to change across the world. The current research ( which probably underestimates) shows around 2% have SEVERE RLS. In the UK alone that means 1.3million are suffering at least twice a week and in need of medical help. In the USA, that would mean over 6 million have severe RLS. As most will have been on DAs for decades, the rate of Augmentation will be extremely high. That's a lot of people to kick up a massive fuss. What happens in the US trickles down to the UK and Europe so hopefully, the Americans will create enough of a stir to create real change. MS was in a similar position 3 decades ago with no research and no drugs available. Today, if you're diagnosed with MS, the drugs are so advanced that people will not suffer permanent disability.
My hope is that RLS (which affects 10 times the number dianosed with MS) will see similar advances in research and treatment.
Rant over.
PS My kids are still waiting for their Irish foreign birth registration, 2 years after applying.
I’m thinking we should do some research and add the names of Irish bodies to Jool’s list. I am mired in urgent work at the moment and know I won’t get round to it for a while (naturally, I am spending precious time I should be using for work posting on here).
I think my strategy will be to post intermittently on this thread to ensure it remains bumped and eventually I’ll succumb to my own pressure and actually find the necessary addresses for the Irish equivalent organizations and ask for them to be added.
Probably could have done that in the time it took to post this but, hey, that’s not how I work.
Hi, I have grown up with "jumpy legs", both my parents had it and my sons both suffer. I sometimes get it in my arms. I have never been to my GP for treatment as I thought it was just one of those things until I found this site.I am very keen to support the campaign as are my sons (both armed forces) but we are not sure what to write regarding treatment as we have never sought any?
That's an interesting point. How often do you get RLS? It would definitely be worth getting bloods as many with RLS can resolve symptoms by raising serum ferritin above 100 and checking they're not taking OTC meds like anti histamines which trigger/worsen the condition.I would suggest stating what you have just written- that you didn't realise it was a disease for which there was treatment.
Many people have RLS that started in childhood and it can often be misdiagnosed as ADHD.
I have autoimmune hypothyroidism and ehlersdanlos hypermobolity type. I monitor my bloods and (sad to say) regularly have high ferritin due to my inflammatory conditions. I do take antihist but never noticed a connection- I will observe in future.
I use a childweighted blanket at night and find this helps - but cat sat on my lap will trigger episode!
I have had RLS since early teens to my knowledge - remember running behind my dad's car in middle of night when going to airport to collect relatives to try to tire them enough to sleep - i get when when i am tired but also when cold and sometimes having massage or reflexology, and then wake in the night grrr. I found magnesium and iron can help occasionally.So I take thyroid meds which I don't think affect, I did take gabapentin for EDS pain but never noticed if that had effect.
I will use your suggested words - anything to help others- I am lucky its mildish
After reading the Daily Mail article on RLS dailymail.co.uk/health/arti... and the comments people have left, it really is imperative we all start writing letters NOW to get the word out that RLS should be taught in depth at universities and medical schools and as part of GP training in the UK. Only we can do this, no one else will!
Joolsg has worked hard on this and made it easy by providing a template for us to follow etc.
Just an update on this. I have had a response from the RCGPs this morning in which they state:" The RCGP curriculum sets the standard for practice on behalf of the GMC, BUT THE RESPONSIBILITY for delivering education and training lies with the statutory Education bodies eg Health Education England".
HealthEducation England wrote to me on 1 June stating:
" the curricula for GP specialty training is set by the RCGPs".
If you get a similar dismissive reply from the RCGPs , please it take it further and ask who is responsible for GP's curricula. If it's not HEE or the GMC or the RCGPs, then which body is responsible?
It is clear that both organisations believe that they are not responsible for setting the GP curricula! No wonder we are totally overlooked by the medical profession.
I have sent a very angry reply to the RCGPs pointing out that HEE believe that RCGPs are responsible for setting GPs curricula.
I am now off to breathe deeply and calm down. The phrase "passed from pillar to post" springs to mind.
Is there an update to this? What eventually happened? I think my head must have been in a hole as I missed all of this. I would have happily helped out. Anything planned in future? I'll get involved. Thanks for doing this for us and everyone else who suffers.
The Royal College of GPs dismissed our concerns and refused to teach RLS, saying GPs would refer to guidelines and prescribe accordingly.That's patenly untrue as we have so many cases if GPs prescribing Quinine for RLS , over prescribing dopamine agonists and refusing outright to arrange blood tests or consider opioids.
I recently sent a Special Delivery letter to the President of the RCGPs asking her to reconsider before I stepped up the campaign by going to MPs and trying to push for a special committee.
I am also trying to contact PR people.
It's frustrating and an uphill battle.
It may well require a March to Parliament and the RCGPs to force them to take RLS seriously.
Seriously, thanks for all that you do. Which isn't recognised nearly enough.
This is interesting.
My first question(s) would be:
1) Why won't they retrain? Is it a budget issue?
2) How many people suffer from RLS within the UK, roughly? Would comparing it to another neuro disease that IS taught and taught well be a good way of driving home the idiocy of this decision?
3) Is there research around Parkinson's risk as one increases dopamine agonists? It's my understanding there is.
I don't expect you to answer these questions and I'm in now doubt that you've either asked them or had a quiet scream to yourself wondering why no one will give you straight talk!
On your point about a PR firm, would one that's been associated with Parkinson's be a good idea? Not too long ago the ME/CFS community managed to get treatment that was making them worse and built on fake research study overturned from being prescribed through the NHS. It's been a very slow slog for them but I wonder if speaking to those that were involved in this might be helpful?
My MP is useless, really useless. She has a safe seat and doesn't respond or care about much.
I'm just throwing words around at this stage! This is just nuts, nuts!
Well, I guess let me know if there's anything you think I could help with? Keep up the good fight!
RCGPs replied that they are constantly attending training courses. We know however, that not many attend RLS courses.I now have a PR expert offering to help push through the next step.
Roughly 1 million in the UK have RLS BUT most only very occasionally and mildly. 100,000 have severe RLS. About the same number as have MS.
Big pharma fund research and trials for MS as they make billions. The treatment for RLS is cheap and generic and so there's no funding from Big pharma for trials or research.
There's no link with Parkinson's except those who already have a neurological Disease are far more likely to also have RLS. 30% of MS patients have RLS. Not sure how many with Parkinson's also have RLS but it will be around the same number.
Parkinson's Society and MS Society don't want to help. I've asked both. They just say they're too occupied helping their own members.
So the next step is contacting MPs and trying to get a Parliamentary Committee set up.
Difficult without the help and support of thousands of RLS patients and they're scattered over disparate groups on Facebook etc.
I will keep fighting.
Everyone deserves to be treated properly. As Dr. Buchfuhrer says, 97% will be completely RLS free with the right treatment.
The UK medical Profession just has to catch up with the top US experts.
I believe you mentioned several times that you act as a patient example for training of medical doctors. I don't know at what stage on in which setting exactly (one university I seem to recall). Would you be able to ask your contacts there whether they know who is responsible for the outline and content of gp training?
I've had a reply from St. George's teaching hospital and they have stated they don't teach RLS and are under pressure to add other areas to their teaching curricula. The ABN have been the most helpful but they were the organisation that confirmed it wasn't on the MLA curriculum and that it should be taught during GP training as most RLS patients will be dealt with exclusively by a GP.
It's clear that it is not on any curricula in the UK but it needs to be specifically taught.
The RCGPs are saying that they teach GPS how to take case histories and then look up any condition they're unfamiliar with. As we know from bitter experience, this very rarely, if ever, happens. My GP was unaware of NICE or NHS guidelines on RLS. Most GPs don't have time during a 10 minute consultation to look up anything.
Another useful contact has pointed out that most GPs keep up to date by following short specialist training courses/podcasts/talks so that's probably something we could work on.
We could produce information webcasts on DAs, iron, medications that help and medications that worsen RLS.
It really is useful and helpful isn't it, MrsJruns. I am in the process of preparing my letters and Joolsg has made it really easy for us all to do this very important task of getting the word out that RLS should be taught in depth at universities and medical schools and as part of GP training in the UK. If we do not do it, no one else will.
I have 8 letters ready to go to university/medical schools and they shall be posted tomorrow. I have already sent one to my local GP surgery, the Royal College of General Practitioners and The Association of British Neurologists . I sent an email to my local MP yesterday.
If you have already sent off your emails & letters could you send me a message. Unless hundreds of you do this, the campaign will fail and the medical profession will refuse to believe it's a serious disease. We will continue to be failed by their lack of knowledge.Please ask friends and family to help as well. We need lots of people to get this off the ground.
I will not send you a PM Joolsg as you know I have done my bit. I appreciate it takes a little effort to do but it has been made really easy to carry out, due to your hard work providing a template, addresses and links. A big thank you to you. 💪👍
As you say, if only a handful of people do this, the campaign will fail and that will be very disappointing indeed.
Come on guys, get those letters/emails done and dusted.✅ Please.
Thanks for this Joolsg.
I’m going to do this over the weekend starting tonight and will let you know once they’re sent off.
I’m going to have to write them by hand so it might take a while.
I know that the response looks discouraging but I believe that people do need to be regularly reminded and will eventually succumb to the low grade pressure of this post continuously popping up. It is a pity we don't have the input of a marketing person to assist with the optimal means of getting people to take action.
My sister is in maketing and I know she has seen some posts on FB groups. I'm not sure what else to do. If everyone is so desperate, why aren't they sending off letters? I'm utterly perplexed. But at least we're trying to get things changed.
Inertia is a condition of humanity. The difficulty is getting people over the hump. This is not how they (we) envisaged dealing with their (our) rls. I think it is important to keep nudging them (us) and gradually it becomes something that we accept we must do.
On the RLS UK FB page the post is pinned so at the top of the page and it has had 12 likes along with one question asked about RLS. I have seen the posting on another FB page and it has had a similar lack of enthusiasm. As you say, we are trying to get things changed. 💪👍💛
I’ve just sat down to start writing mine. I just read through the template. It’s brilliantly written. To me anyway. I don’t think my gp is going to appreciate receiving this from me. Not that that will stop me. Do I address it to each doctor at the surgery? Can I send it to other gp surgeries do you think? I’ll do anything I can to help with this.
Thanks so much. I addressed my letter to the Chief Executive ( who knew surgeries had a CEO?). But just one letter to the Practice Manager should be fine.Much appreciated.
My MP simply replied that he knew all about RLS and then sent me the petition that had been presented to the Gov. No further responses. I also wrote to Simon Hoare MP who has a special interest in health. He didn't even bother to reply.
I’m wracking my brain trying to think of a way to get more of us doing this. Has anyone sent a letter to Sajid Javid? I will find the address and send one to him. I sent one to Caroline Noakes but haven’t heard back yet. Simon Stevens is leaving and I don’t know who’s replacing him but I think we need to bombard these people if we want this to be successful and it is so imperative that it is.
I emailed the curriculum21@foundationprogramme.nhs last week when I posted out my letters and as I’m an idiot and I wrote actual letters instead of emailing I asked them for a postal address so I could send it in the post.
They responded today asking me what the letter was about as they are all working from home.
Contact
House of Commons
Sajid Javid MP, House of Commons, London, SW1AOAA
020 7219 7027 —-
He’s replaced Hancock so I thought I could send him the letter too, he is minister for health and social care after all. What do you think Jools? My sister and best friend said they’d write letters but haven’t yet.
They are a lot busier than me so I think I’ll write the letters for them and get them to sign them and send them off.
Just to let you know I've sent letters off you suggested, including Sajid Javid. Let's hope the campaign has some impact. Thanks for all your hard work on this
Just had a reply from Curriculum 2021 to say that they don't oversee GP training. They advised me to contact the Royal College of General Practitioners instead.
Yes I've had similar replies. RCGP say they're not responsible and to contact Health Education England. HEE say they're not responsible and contact RCGP. Strange how no body seems to be responsible and they send us round in circles. It's actually quite worrying. No body seems to want to take responsibility. No wonder RLS falls through the cracks.I'm trying to contact GP training organisations that provide ongoingGP training but so far they're not responding.
First of all, so pleased to hear about your success with buprenorphine. Long may it continue! And thanks for sharing a copy of your interview with Cannabis Health. I'm seeing my consultant neurologist tomorrow and will talk to her about your experience.
I also wanted to let you know that I did receive a response from Dr Jonathan Leach, Hon Secretary of the Royal College of GPs in reply to my letter about RLS UK's Campaign for education of GPs in the UK.
Whilst sympathising with my own situation and understanding my concerns about GPs' awareness, he went on to say the following:
'One of the difficult challenges for the RCGP curriculum is to provide a balance of the needs of GPs who are responsible for a very broad scope of practice. Of necessity it describes learning outcomes at a high level, rather than providing a detailed syllabus for individual conditions.
The RCGP curriculum sets standards for practice on behalf of the GMC, but the responsibility for delivering education and training lies with the statutory Education Bodies e.g Health Education England.
RLS is just one of many significant conditions GPs might be faced with during their career and it would be expected that any doctor who is a generalist dealing with patients with RLS would inform themselves sufficiently to provide or coordinate the appropriate care for that individual and involve specialist services when required.
Beyond the specific challenges of RLS, the experience of individual patients illustrates the wider difficulties of living with a long term condition and all the challenges that this entails. It also illustrates the benefits of adopting a holistic and personalised approaches to care. The GPs' Core Curriculum attempts to address this in a number of ways which he goes on to describe.'
I know it's a bit late, but I will write a further letter to Health Education England and share any response.
Thanks again for all your hard work and hope the new medication continues to work for you
Thanks John,I received the same stock reply and I had already contacted HEE and they said the RCGPs is responsible for GPs curriculum. Talk about round robin. The left hand doesn't know what the right hand is doing and we fall in between the cracks.
They also try to say GPs are trained to read & research but we know from the horrendous posts on here that GPs and neurologists don't do that.
I despair. I've got an article coming out in New PathWays MS magazine soon and I'm doing a radio show on UK Health Radio next week. I will keep pushing and pushing until they listen.
I am now completely RLS free but I am furious that a serious disease affecting 1 million people in the UK is utterly dismissed. If the RCGPs realised the economic and health benefits of proper treatment they'd include it. They include rare diseases. Off to scream....
Jools, did you forward both responses to the other parties to confront them with the round robin effect?
You may have done so already, but you can also attach or link to the EARLS / brain institute (?) study on the costs of RLS to society.
Anyway, you are an inspirational, pointing and illuminating the way for us, others sufferers. Thank you for your hard work, angriness on our behalf and perseverance.
Yes I did and neither replied. I also wrote to RCGPs with Banjo's story to point out the failure of GPs to read & research which they insist all are trained to do. No reply so far. The silence is deafening. Methinks they are perhaps feeling guilty.
Now finally I have more or less recovered from severe side effects of Covid which kept me in hospital for so long, I'm back in action. My own fairly large GP Practice has absorbed everything I have given them and we have intelligent conversations. The team includes a Pharmacist who is talking to other pharmacists he knows too.
I have saturated everywhere I know with letters. My latest consultant at Stoke has spent some time with me and said that he wants to talk with me at much greater length. It seems to me that I am making some difference with Medical personnel, including Physios, Occupational Health that I come across .... Its spreading. I also put a formal complaint into the local hospital who when I was admitted to resus with very severe asthma following pneumonia, refused to use the pramipexole I took in with me. Indeed they withheld my medication for RLS. By the end of the 4th day I was in a really terrible state, bathed in sweat, in terrible pain, shaking all over, utterly confused. I am sure they thought I was making it up. In the night they got a consultant to see me. He gave me an ECG and Trinitroglycerine under my tongue. That even after I explained what the trouble was. He was a Cardiac Consultant. No one listened but I created so much noise that they finally gave me my medication the following day.
I have a hearing with a good number of senior staff from the hospital after Christmas. I'll get that hospital top take notice. They are also managing my Ferritin Infusions.
With a Dr I am personally producing some short You Tube/Vimeo videos and podcasts. I have some other medical professionals who said they would take part and a few 'patients'. We'll see what happens. I want to shout about this when they have stopped shouting about so called Omnicron.
I've also produced some printable leaflets before I realised they had some in the RLS.org
The latest booklet they have produced for Medical Personnel is exceptionally informative. Have you seen it???
A surprise this afternoon. I received an email from Academic Support Lead, College of Health & Life Sciences, Birmingham. This is only the second reply I have had from all the letters I sent out.
"Thank you very much for taking the time and trouble to write to us about restless leg syndrome. As you say, it is a common and debilitating condition.
I will pass on your letter to relevant colleagues."
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Is there a specialist in the uk for RLS?
consultants in the Uk to help rls
Has anyone in the US taken a long time to have their RLS diagnosed?
