NEURO LIFE NOW SURVEY UK

[Joolsg]

To raise awareness of the lack of medical training and the poor treatment of RLS in the UK, it would be very helpful if all UK RLS patients would complete this survey by Neuro Life Now. It's run by the Brain and Spine Foundation and they receive funding for research and treatment. Share it on other platforms as well.

Make sure you mark RLS as your main neurological condition and explain how you feel your treatment could be improved. This is particularly relevant if you are taking or have been taking Ropinirole, Pramipexole or the Neupro Patch. Mention if you have had blood tests refused or if you have failed dopaminergic drugs and pregabalin/gabapentin and have been refused low dose opioids. If you're experiencing augmentation, set out exactly what you're experiencing and whether you're receiving any help.

neurolifenow.org/

[ChrisColumbus]

Done

[Joolsg in reply to ChrisColumbus]

Many Thanks😊

[Bumble34 in reply to Joolsg]

Done.

[Joolsg in reply to Bumble34]

Many 😊

[HipHop1972]

hi Joolsg, I have completed the survey as requested but it was more of a tick box questioner so didn’t give any scope for expanding on the effects of RLS on sufferer’s lives

[Joolsg in reply to HipHop1972]

I completed a box that asked me to comment about my treatment. I wrote about 2 paragraphs. Maybe try again. I think it was box 4a which asked how the Gov could improve things. I used that to say they could make sure medical profession received training on RLS etc.

[HipHop1972 in reply to Joolsg]

Hi Joolsg, I’ll have another look at the link you sent through. I did complete that section but didn’t expand , I will revisit it, amend and resend

[Pam34]

done x

[Joolsg in reply to Pam34]

Many thanks xx

[Bowie4eva]

Completed. X

[Memmy]

Done

[Kissfan]

Will complete today.

[67Waterman]

Thanks Jools - for everyone else .... the only part where you can actually WRITE anything is number 2.3 - so write everything that you feel needs to be written in this section. Sally x

[GaryHB]

Done

[Whymelord]

Thankyou Joolsg,I've just completed the survey.

[Hazuki]

Thanks for sharing,

As an aside, on This Morning (UK daytime TV show), a GP was asked by a caller who is going through the menopause what she should do about Restless Legs Syndrome. The GP said it can be annoying to have legs that sometimes twitch at night, then gave advice about increasing HRT medication.... It's such a shame that the medical professionals in the UK have such a poor understanding of what RLS even is let alone how to treat it.

[Joolsg in reply to Hazuki]

It's scandalous. The fact the GP referred to it as 'annoying' shows how little they understand the severity of RLS. It's not 'annoying' it is utterly UNBEARABLE for those with nightly, severe RLS.I may contact the programme!

[SilverEvie]

Done for what its worth! but must try

[Desperate100]

Done! And shared on Facebook.

[Joolsg in reply to Desperate100]

Thanks. The more, the merrier.

[TobyTobias1]

Completed form. I also was not happy about how RLS was referred to in This Morning program . I will also email the show .

[Joolsg in reply to TobyTobias1]

Me too.

[Moonwalker1967]

Done

[Joolsg in reply to Moonwalker1967]

Many 😊

[Seaux]

I live in the US and we are having the same problems here. I wish you great success in the UK!!

[Joolsg in reply to Seaux]

Thanks Seaux. Every country in the world is experiencing the same catastrophe with dopaminergic drugs and augmentation and most doctors have no idea why patients are getting so much worse. They tell them the disease is progressing.It's awful. Thousands and thousands suffering unnecessarily because doctors aren't taught about augmentation or how to treat RLS effectively with pregabalin/gabapentin or low dose opioids.

We all just have to keep chipping away, one doctor at a time.

[Seaux]

I am going be very bold during my next visit with my neurologist and ask him very pointed questions about augmentation. I think we all need to do this and if the docs flunk the test we need to refer them to the article on augmentation at rls.org. Just because they are not staying up with new info in the field is no reason for us to suffer.

[Joolsg in reply to Seaux]

Well done. Hopefully he will listen & learn & use the Mayo Algorithm to direct future treatment.