RLS UK CAMPAIGN FOR EDUCATION OF GPS ... - Restless Legs Syn...

Restless Legs Syndrome

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RLS UK CAMPAIGN FOR EDUCATION OF GPS IN THE UK

Joolsg profile image

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:

1. Royal College of General Practitioners

30 Euston Square

London NW1 2FB

parliament.uk/

2.The Association of British Neurologists

Ormond House

27 Boswell Street

London WC1N 3JZ

info@abn.org.uk

3. Your Local GP Surgery

4. Your local MP

parliament.uk/get-involved/...

5. Your local university/medical school.

medschools.ac.uk/studying-m...

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.

54 Replies

Just a note to say "Well Done"!

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.

Just to avoid any professional nitpicking.🤔

Joolsg profile image
Joolsg in reply to Madlegs1

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...

Madlegs1 profile image
Madlegs1 in reply to Joolsg

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!!!🤔😝

Joolsg profile image
Joolsg in reply to Madlegs1

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.

Mercurial profile image
Mercurial in reply to Madlegs1

Yes, well done from me too Jools!!!

And thanks for this point Madlegs, I’ll be sure to include that edit.

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?

Joolsg profile image
Joolsg in reply to twizzle303

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.

The more people who write in, the better.

twizzle303 profile image
twizzle303 in reply to Joolsg

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

😱

Kaarina profile image
KaarinaAdministrator

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.

Thank you Joolsg. 💪💪

Joolsg profile image
Joolsg in reply to Kaarina

Thanks Kaarina. I just hope beyond hope that RLS is taught in future in the UK. It's so depressing and sad to read the daily suffering.

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.

Wow! You are amazing. Thanks so much for all this work for the benefit of us all.

That is no good news Jools.

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?

Joolsg profile image
Joolsg in reply to LotteM

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.

Mercurial profile image
Mercurial in reply to Joolsg

If you did, you’d be really helping all of us. I would love to listen to or read it.

Thanks for sharing this template! Very helpful

Kaarina profile image
KaarinaAdministrator in reply to MrsJruns

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.

Kaarina profile image
KaarinaAdministrator

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.

Kaarina profile image
KaarinaAdministrator

There are two of us plus Joolsg that have sent out letters. Has anyone else done this as well please?

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.

Kaarina profile image
KaarinaAdministrator in reply to Joolsg

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.

Joolsg profile image
Joolsg in reply to Mercurial

Thanks so much.

Kaarina profile image
KaarinaAdministrator in reply to Mercurial

Bless you, now that is dedication, writing them by hand. Your support is really appreciated, Mercurial. 💪👍💛

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.

Kaarina profile image
KaarinaAdministrator in reply to Joolsg

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.

Joolsg profile image
Joolsg in reply to Mercurial

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.

Mercurial profile image
Mercurial in reply to Joolsg

I’ve written 12 letters so I have a few extra. I’m just addressing them now and I’ll get them posted.

Thank you so much for this Joolsg.

Kaarina profile image
KaarinaAdministrator in reply to Mercurial

Wow, true to your word. Thank you. You are a star too. ⭐⭐

Joolsg profile image
Joolsg in reply to Mercurial

That's fantastic. Thanks so much.

Kaarina profile image
KaarinaAdministrator

I received an email from my MP this afternoon, with a pretty standard reply. It consisted of two sentences,

"Thank you for taking the time to contact me about this very important issue.

I have raised your concerns with the relevant Government department and I will pass on any response that I receive from them."

Joolsg profile image
Joolsg in reply to Kaarina

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.

Kaarina profile image
KaarinaAdministrator in reply to Joolsg

Perhaps the reply I received was not as bad as I thought then, although I am pretty sure I will not receive another reply. :(

Done ... just need to post. Many thanks Joolsg

LotteM profile image
LotteM in reply to Music1

Thanks Music1. Why are there so few others?

Joolsg profile image
Joolsg in reply to Music1

Thanks Music. Let's hope other members do the same.

Mercurial profile image
Mercurial in reply to Music1

That’s brilliant Music.

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.

Do we only have until the end of this month?

Hi Joolsg, I can’t download the template letter? Would love to get it sent to as many places as possible to get RLS some research. Thanks

Joolsg profile image
Joolsg in reply to Sew72

It's not 'downloadable'. You can copy and paste into your emails or 'Word' though. Please do as we don't seem to have many people bothering.

I have no idea why. Unless thousands do this, RLS will continue to be seen as a mild disease by the Medical profession.

Kaarina profile image
KaarinaAdministrator in reply to Joolsg

Very well said. Joolsg.

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.

Joolsg profile image
Joolsg in reply to Mercurial

Good idea but I'll bet he doesn't answer. I emailed Simon Hoare who says he has a special interest in health. He didn't even reply.

Kaarina profile image
KaarinaAdministrator

Bump

Hi Joolsg,

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

John

Joolsg profile image
Joolsg in reply to J296

Thanks so much John.

Hi Jools,

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.

postgraduatetraining@rcgp.org.uk

Joolsg profile image
Joolsg in reply to J296

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.

This is an uphill battle.

Thanks so much for taking part.

Kaarina profile image
KaarinaAdministrator

I have had only had the courtesy of one reply and that was from my MP which was uninformative. :(

Joolsg profile image
Joolsg in reply to Kaarina

It's very demoralising. Just shows what an uphill battle we face.

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