Latest News From RLS-UK

[Joolsg]

rls-uk.org/news

[Huntingleroy]

Oh my life that is amazing news !

[Joolsg in reply to Huntingleroy]

Isn't it? Funny how NICE guidance and RCGPs do a 180⁰ turn around as soon as BBC start asking questions....

[Huntingleroy in reply to Joolsg]

Mmmmm very strange !

[Jelbea]

This is wonderful news. Congratulations to you for all your hard work and determination to get this horrible affliction and dreadful DA drugs acknowledged. I am so pleased for your success and I sincerely thank you and indeed all the others on the site who have contributed in any way. WELL DONE😊😊😊

[Elisse3]

That is amazing news at last people are listening to us. 😊

[Joolsg in reply to Elisse3]

It takes public shaming to make them listen sadly.

[Elisse3 in reply to Joolsg]

If that what it takes then so be it. 😊

[smilingjane]

Thank you for posting Jools'Exciting' and relieving to see this coming out in the open x

[Kakally]

👍👍👍

As I said recently, things are moving slightly in the right direction . Particularly great that DAs are no longer first line. BUT so many things are still wrong in the guidance .

The sneakiness , as you say Joolsg is very wrong and without shouting it to the rooftops and at the very least informing RLS-UK and GPs’ journals , neurologists’ journals and medical schools so students can at last start to be taught at least some of the correct management.

Basically they know they have been ‘found wanting’ and are going to endeavour to avoid open discussion about how this DA debacle should never have happened. There were warnings as far back as 1972…and things went very awry in the ‘noughties’.

Pharmaceutical companies, FDA , MHRA and some senior clinicians are to blame and will never own up.

DAs will be around for many years to come

[Joolsg in reply to Kakally]

May they hang their heads in shame for the suffering & distress they have caused.What's sad is that I used to trust my doctors. Mistreatment has now made me very wary. I research and question everything now.

[Purpleyam in reply to Joolsg]

Absolutely Joolsg, we don't trust any level of medical specialists without our research. It's a sad state of health care everywhere that you need to go in armed with your own diagnosis almost and preferred treatment. Good job with this effort and success in getting RLS in the spotlight pn BBC 🙌

[SueJohnson]

That's terrific!

[Mulberry100 in reply to SueJohnson]

Can I add my heartfelt thanks to all those who give your time and energy keeping us so well informed and hopeful that, one day, there could be a cure. Just to be given airtime to discuss DAs and the damage they have caused, (not to mention that for many of us have destroyed our receptors to more current medication) feels very positive. Once again thank you.

[LotteM]

Very well done, especially to you personally. I suspect very strongly that you were the initiator and motor of getting things rolling and reaching this point. 💙

I noticed they ‘baited’ with the sexual behaviour but clearly included not only gambling and shopping compulsions, but also augmentation. That is important.

[Joolsg in reply to LotteM]

Baby steps. There's still such a long way to go. But this gives some hope.

[Kakally]

well done Joolsg on the BBC South Today programme. You did well.👍👏

Hopefully that and more tv and other publications will keep the momentum , preferably including the sins of the giant Pharma , MHRA, FDA etc

[Joolsg in reply to Kakally]

😊

[Jumpey]

Well done!

[Noddedoffagain]

Brilliant news !

[Ouchagain]

This is really good news, well done Joolsg and all of you involved. But does anyone know whether the training will just be for student GPs or will there be any in the CPD for all the GPs and consultants out there already? That is going to be so important.

[Joolsg in reply to Ouchagain]

Good point. RCGPS has previously refused to teach RLS after the 2019 campaign and then ghosted us. The BBC investigations and questions clearly spooked them and pushed them into a fast response.

The RCGPs now say

'RLS will be specifically taught in the updated GP curriculum to take effect from August 2025.'

All GPs have to complete 'continuing education' after qualification.

[Ouchagain]

I really hope they do. Does RLS-UK have GP members who can monitor and feed back? I'm one of those that need to come off Ropinirole, bracing myself for a challenging summer trying to get a GP on board, with a neuroconsultant appointment in September, just hoping they will know enough about the disease to be able to get me on track to a treatment that will work. You and Sue are doing a brilliant job in all your information and advice. You stopped me upping my Ropinirole dose as symptoms have got worse.

[Joolsg in reply to Ouchagain]

I'm sure RLS-UK will now follow through with this to make sure the 'curriculum' is actually correct!

[Joolsg in reply to Ouchagain]

There are a few good specialists around now. Who are you seeing in September?Hopefully, if you show the new NICE cks guidance to your GP- you can start reducing Ropinirole now and the GP will arrange iron infusions and prescribe a low dose opioid to settle withdrawals.

[Ouchagain]

I'm in Oxford, was referred by the neurology team at the John Radcliffe after I had neurosurgery (armed with RLS -UK info) for another issue last October. The anaesthetist was excellent, knew all the issues, but mobility after the surgery was a problem, and maybe training of hospital physiotherapists might be the next thing on the RLS-UK radar. After, when I saw a far from empethatic locum GP after about coming off Ropinirole she told me I'd need a consultant to prescribe gabapentin or any of the other alternatives, so I'm glad to have that appointment already. I'll start the journey after summer holidays, when there are short nights and a garden needing my attention...

[Joolsg in reply to Ouchagain]

There is a postcode lottery in the UK.Gabapentin and pregabalin can be freely prescribed 'off label' in various formulary areas. Clearly not in Oxford.

But the new NICE cks guidance might help persuade any specialist you see.

[Simkin]

Brilliant news Joolsg. Congrats to one & all for hardwork & persistence.