My updated post…I saw Dr. Davenport head of ABN (Association of British Neurologists) today .

[Kakally]

Dear Dr. Davenport ,

You kindly saw me today so I could get advice for my RLS for now and in the future.

I also asked you for general advice for my future treatment in case certain drugs are forbidden to be prescribed. I particularly went to you as you are an eminent neurologist and head of the Association of British Neurologists and therefore your opinion would have ‘clout’ if I needed help in the future.

I also asked you about

1. please would you encourage inclusion of RLS in the RCP core curriculum ? And

2. Please ask for inclusion of iron therapy as first line treatment for RLS ?

Fortunately:

1.You agreed that RLS should be included in the core curriculum.

—However it wasn’t completely clear as you said “it already is included” , though I cannot find it in the Royal College of Physicians core curriculum. Or only if it is being ‘lumped together’ with movements disorders e.g. PLMD , periodic limb movements disorder.

Of course, RLS is so much more than night time PLMD . There is an association but RLS has at least 4 more other genetic associations, plus so much more than limb movements, namely the torturous , sensory discomfort which can be DAY and night and continuous for many hours and causes desperation and suicidal thoughts in so many sufferers who have moderate and severe symptoms.

Interestingly RLS IS included by name in the curriculum for the Royal College of Paediatrics and Child Health, so mentioning it by name in the adult, RCP version would be very helpful if indeed it isn’t genuinely there already……

2.You said that iron therapy IS first line treatment, which is fantastic but doesn’t seem to be backed up in the RCP, NICE or ABN guidance for treatment. I’m not sure if you were meaning the algorithms below or something different.

These fortunately are clearly included in Dr. Jose Thomas’s guidance as the Aneurin Bevan Healthcare algorithm for treating RLS in South Wales.

Anyway, I am much encouraged by your positive comments and it gives me confidence for my future RLS management journey

Thank you

Kind regards

XXXXXXXX

[SueJohnson]

I notice that it says oral iron should be taken twice a day. That is wrong since once one takes iron hepcidin is released which prevents iron from being absorbed for up to 24 hours. Otherwise the iron treatment outlined if it were followed by all doctors is spot on.

[Kakally in reply to SueJohnson]

You are totally correct. I grabbed the best/reasonable algorithm y to o hand plus ie I-v one

I-v iron algorithm

[Joolsg]

Excellent Kakally.Iron treatment is mentioned in NICE cks guidance, but not iron infusions. It does not say anything to guide treatment, just a vague reference to treating the underlying condition. The same with NHS guidance.

For doctors to be guided properly, both NHS and NICE guidelines need to set out iron infusions as a treatment option

specifically.

You have hit the same barrier as me. Professor Gavin Giovanonni, a top MS neurologist, also disputed my assertion that most GPs AND neurologists were unfamiliar with latest RLS teaching.

I think he means that he and his immediate team are familiar with RLS and treatments, but he doesn't realise the scale of the problems elsewhere.

But, little by little, we will get through to doctors.

Thanks for raising teaching of RLS with him. He could be a very useful ally.

[Kakally in reply to Joolsg]

He is no ally , I’m afraid Joolsg… I’m not sure if you appreciate what I haven’t said….

[Kakally in reply to Joolsg]

Tell him about the EFNA report October 2022, that says in Europe 84% of family docs know very little about RLS and 56% of consultant neurologists !! He must live in some magic land !

[Joolsg in reply to Kakally]

I commented on Prof Giovanonni's blog AND wrote to him. He is aware of the scale of the problem, as he is always posting examples of poor MS treatment by other MS neurologists. Good specialists don't seem to like to tread on each other's toes professsionally.I'm sorry I didn't read between the lines and see that he will not be helpful in getting getting RLS taught effectively.

That leaves us with the political route. Lobbying MPs to get RLS taught fully and effectively.

😔

[Kakally]

I have just updated my original post to include my letter of thanks following consultation with Dr. Richard Davenport today, which though I was thankful , did leave me somewhat bemused in parts.

[Munroist]

The Neurologist I was referred to a year ago in Nottingham QMC hospital said regarding iron infusions:

“ the bottom line is it is not a commissioned service here in Nottingham… I don’t know if you’re aware, but NHS services are under immense pressure at the moment. Undertaking the design, funding commissioning and delivery of an IV iron service for restless leg syndrome is not something that we can contemplate here in Nottingham at this time while we focus on providing core services. It is a complicated and expensive treatment to deliver and would need to be commissioned by our local CCG. Unfortunately, it is currently not, alongside many other treatments, the lack of which causes frustration for many patients. “

Some interesting take outs, one of which is that I’d have to campaign with the local CCG to get this changed and the fact that RLS sufferers don’t appear to be part of their core services. It was then suggested I go privately as “the private sector is going to have to pick up a number of aspects of care over the next few years while the NHS tries to deal with its core work.”

I fail to understand how, if one NHS trust such as Newcastle can deliver this, the remaining trusts, can’t simply adopt the process, which is tried proven and documented?

Faced with this situation and attitude, I am working with my supportive GP and have been referred to Newcastle for an infusion, and I am now awaiting their response.

As a final point I’m well aware the NHS is struggling and has been for several years so this doesn’t surprise me too much, I suppose I was more bemused by the fatalistic attitude, but if it’s an every day fact of life, it’s probably understandable.

[Kakally in reply to Munroist]

Good luck with getting your infusion soon🤞🤗. I am so glad you have a supportive GP

RLS again is the lower-than-Cinderella disorder that is not considered serious , despite the torture and suicidal thoughts and break up of relationships that can occur with moderate and severe symptoms .

Yes, the NHS is becoming third world medical care in many respects. There are of course some emergency and other specialties that give excellent care but that too may sometimes be totally postcode lottery. And going privately is a very unfair option that many of us are unable to afford.

[Joolsg in reply to Munroist]

Tragic. Yes, the NHS is broken and it may never recover. We were once rated top health care system in the world.Iron infusions actually work out economically. If they're given as first line treatment, they resolve the majority of cases and save the NHS a lot of money on RLS appointments, meds and co morbidities like HBP, heart disease, diabetes, depression and anxiety are all reduced.

But let's keep sticking a plaster on open heart surgery wounds!

[Kakally in reply to Joolsg]

I Totally agree Joolsg..😔

[Simkin]

Well done Kakally for raising all these issues.In my 30 years of RLS experience every treatment has been "trial & error", both by GPs & neurologists.

At long last I have a wonderful GP who listens to me & when I tell him about the experiences of our members he is very receptive.

Hallelujah! I have told him he must not retire!

[Kakally in reply to Simkin]

I am so glad you at last have a wonderful GP. It helps so much to have a compassionate listener who will do their best for you 🤗

[Simkin in reply to Kakally]

Thanks 😊

[Joolsg]

Very calm and subdued. It may register somewhere in his subconscious and he MAY suggest it is included in the teaching curriculum.