Holistic first consultation of RLS sufferers with their doctor and use of intravenous iron therapy

[Kakally]

Check this out….. Hot off the press…

..After the recent survey by European Federation of Neurology Associations (EFNA) October 3rd 2022* (see below) highlighting the more-than-disappointing results on skills of medical personnel…..

This is the 1-10 points (or very similar) required in the urgently needed ‘BARE BONES’ of RESTLESS LEGS SYNDROME ‘handout’, which should be given at the 1st consultation with a doctor, usually the GP

1 Empathy and compassionate attitude , and very focussed history taking      

2  Leading to consideration of differential diagnostic red flags , separate from or possibly associated with RLS

3 Assess degree of severity mild, moderate or severe Moderate/severe subjects,

4 Arrange for a blood test , (general parameters , fbc, CRP, blood glucose TFTs) plus an ‘iron’ panel. Fasting iron, TIBC or transferrin, ferritin and TSAT as a percentage 

5 Suggest IRLSSG Rating scale  to all mod/severe subjects for 4-6 weeks 

6 Give all mild/mod/severe subjects a handout written by ABN?? with all of the above points plus signposting to RLS-U.K. and all other useful latest research. They can take it home , stick it on their fridge door and read and study it over the coming weeks  , probably when they are stamping around at 2am, unable to sleep!

7 Give a follow up appointment for 4-6 weeks for moderate/severe subjects to check their rating scale results, discuss their blood test results and discuss their  treatment options 

8 For moderate/severe , most should have intravenous iron . See my discussion on iron therapy and dispelling the ‘fallacious fear of raised ferritin’ (not the sensible scientific care in avoiding iron overload) Discuss treatment options - intravenous iron, alpha 2 delta ligands , opioids and only if absolutely necessary………………dopamine agonists.   

9 For those with mild disease, they should still receive the handout and be told to make another appointment if the condition worsens (+ possible blood test etc. if possibly anaemic or other diagnoses)

10  Aafter logical , careful treatments and if there is failure of them, probable expedited referral to secondary care or incredibly careful monitoring of the possibility of development of augmentation)………         

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This ‘handout’ or similar, should be the basic ‘Bare Bones’ of RLS education and used in medical school , in GP training, for junior neurologists and obviously for patients and caregivers and interested relatives and general public. EVERYONE SHOULD KNOW WHAT IS EXPECTED FROM THE FIRST CONSULTATION WITH MEDICAL PERSONNEL. It will not complete the whole personal plan but (i) they feel listened to and (ii) they can see that they are at least on the way to caring and compassionate help with their Restless Legs Syndrome ———————————————

*EFNA. European Federation of Neurological AssociationsOctober 3rd 2022—SURVEY RESULTS: Assessing diagnosis and care pathways of people living with neurological disorders Your views on this idea for a first consultation for RLS sufferers with their doctor would be welcome.

I know that there are a number of people who are quite anti intravenous iron and I respect your views. However I am increasingly sure that it can be of help to a good percentage of moderate and severe RLS patients. I co-authored the case report below  on treatment of RLS with repeat intravenous infusions of iron 

karger.com/Article/FullText...

Best wishes Dr. Kate Condon

[Joolsg]

Excellent. Brava!!!! I wholeheartedly agree with your points and would add that buprenorphine and methadone should be added to the list of drugs licensed for RLS.

Now the uphill struggle to get the ABN, RCGPs & all the UK medical schools to actually teach the basics.

It's something I'm currently pushing for and have so far managed to get Bart's to agree to a student doing a research paper and the clinical skills team have asked me to work with them in devising the basis for a teaching module. I also spoke to the head of teaching at the ABN and whilst he agrees the lack of knowledge is abysmal, he feels that teaching GPs should be the priority, given the dire shortage of neurologists, the current parlous state of the NHS and that most patients see their GPs first.

Onwards and upwards.

[Kakally in reply to Joolsg]

Thanks Jools. I’ve written about this and other stuff to the head of teaching at the ABN, the GMC, Royal College of GPS , and Pulse newspaper and a few others . I doubt I will get any reply . Keep up your great work! xxx

[Kakally in reply to Joolsg]

and ditto about Methadone and buprenorphine etc…!

[Jumpey in reply to Joolsg]

Thanks Jools.

[Jumpey]

Thank you!

[Hope61]

that is amazing and yes everyone one in a doctors office , inmed school or nursing. Should have this info ! It’s so obvious , I just don’t understand the fight we have to keep having to explain our condition !