RLS UK CAMPAIGN FOR EDUCATION OF GPS IN THE UK

[Joolsg]

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

[e-mail]

2.The Association of British Neurologists

Ormond House

27 Boswell Street

London WC1N 3JZ

[e-mail]

3. Your Local GP Surgery

4. Your local MP

parliament.uk/get-involved/...

5. Your local university/medical school.

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

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.

[Spurdog1]

Grear, but does this include PLM'd? Always lumped in.

[Joolsg in reply to Spurdog1]

Any teaching of RLS should include PLMD and treatments are the same.

[cicek]

Great thank you. I shall definitely be sending the letter to as many people as I can.

[antelope99]

Thanks for all your hard work Joolsg.I will definitely be sending some letters.

[Joolsg in reply to antelope99]

Thanks. The US organisation have done well by using social media, letters and demonstrations to Capitol Hill. Hopefully we may achieve raised awareness, if nothing else.

[Gmc54]

This is a really good idea, but would we be better holding off until covid news dies down. We might only have to wait another 9 months or so, and it would carry more impact maybe?

[Joolsg in reply to Gmc54]

I think covid and longcovid will be with us for decades so I'd rather push now. Thyroid disease UK has achieved a massive leap forward by constant Twitter posts and the authorities have now started to listen. I've been following their campaign on social media.If anyone is active on Twitter or FB, the more we post and repost, the more doctors and organisations sit up and listen.

[Jumpey]

Well done for all your hard work on behalf of all sufferers.Thank you.x

[Hoochybaby]

Where do I find the template?

[Kaarina Administrator in reply to Hoochybaby]

If you scroll down the post, the template letter is there. 😀

[Joolsg in reply to Hoochybaby]

Sorry for delay- I was at a friend's house. As Kaarina kindly replied, you will find it further down the post.

[Rafiki-1240]

Well done but remind members again in mid-June so the matter is not forgotten.

[Kaarina Administrator in reply to Rafiki-1240]

Good idea. This thread will be boosted every now and again, so hopefully it will be a constant reminder! It is also a Pinned Post.

[jollyjune]

Thank you so much

[involuntarydancer]

Jools, This is amazing. This is exactly the sort of thing we should be doing. Thank you so much. You have made it so easy for the rest of us to take action. We will have to organise an equivalent for Ireland. Maybe even a trans-EU campaign.

[Graham3196]

Great idea. I wish we had politicians who would think so far into the future.

[LotteM]

Well done, Joolsg. Unfortunately I can't be of much help, as I am not in the UK. But I urge all UK people to take this up. I think we all recognise the need for recognition of the seriousness of and knowledge about RLS among medical doctors.

Maybe some people want to share what they wrote under 'personal experience' to help others draft their personal story? I know that would help me... Cees Jongenelen's story on EARLS.eu may also serve as an inspiration. I hope all these institutions get inundated. Family and friends of RLS sufferers could send the letters as well!

[Kaarina Administrator]

Bump!