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NHS protocol / treatment

Hi. I’m wondering if there is a definitive pathway in the NHS regarding treatment for MS?

I was diagnosed with MS 13 years ago following an episode where there were sensory changes to my body from the chest down and a previous episode of optical neurosis. I had a lumber puncture which confirmed the diagnosis. In time the sensory changes eased and I’ve been left with what feels like wearing a pair on socks on my feet at all times. Through my years with MS I’d made appointments with my GP whenever I felt there was symptoms likely to be related to it however on each occasion I was usually met with a puzzled look!

To get to the point: in February of this year I had been drinking with friends and found I was unable to pass urine (very uncomfortable!) and ended up in hospital to be catheterised where my bladder was found to be at capacity (this had also happened a few years before without a follow up). Since then I’ve started intermittent self catheterisation to enable my bladder to be fully emptied to avoid the risk of a UTI. I’ve also been experiencing increasing levels of weakness in my legs and am now finding walking an distance a challenge and my balance questionable. Since my diagnosis 13 years ago I have never been approached to be offered the chance of medication to reduce relapses. It was only since the event in February that this has been finally spoken about and I am due to begin on Techfidera in a few weeks. I am also now aware that in 2015 there was a guideline change by the Association of British Neurologists and it was on hearing this that my frustration grew. I question why I was never given DMT’s before as I now face the prospect of being unable to return to my position at work (I work in the NHS).

I’m wondering if this is a common scenario for those effected by MS and if a passing comment by the GP that finally got the ball rolling perhaps tells a wider story. He had said ‘It looks like you’ve been slipping under the radar.’

Thank you for reading this.

Hi

This does sound fairly unusual. But there may be others like you who’ve never been given any information about their MS and any potential DMDs.

Have you been seeing a neurologist during the time you’ve had MS, or just your GP? If you’ve been seeing a neurologist, were always diagnosed with relapsing remitting MS and yet never been given the option of any DMDs, I find that not bad luck or ‘slipping under the radar’, it’s actually an unforgivable error. And one which you should probably report to your hospitals PALS unit (Patient Advice and Liaison Service).

But if you’ve just been seeing your GP throughout, you can’t really expect them to have all the facts about MS at their fingertips, and if you’ve been fairly mildly affected, I ‘suppose’ the GP did what they could. Except that they should have realised you weren’t being seen by a neurologist and therefore couldn’t be prescribed any disease modifying drugs. And actually they should have been aware that these existed.

At least now you are due to start Tecfidera. I assume that means you now have seen a neurologist and maybe also have the contact details of an MS nurse service. So you should from now on see a neurologist on at least an annual basis.

Sue

Hi Sue. Thank you for your reply.

Yeah I’ve seen the relevant neurologist now. I’m also now in contract with the MS nurse and she has been very helpful. When I was diagnosed with MS I saw a neurologist the once and it fell silent afterwards. The GP has always been my point of contact and I had expected a GP to pass on any MS related issues higher during an appointment due to this being the reason I had made the appointment in the first place. I was never told any different.

For what it’s worth, there are NICE guidelines on all this, and here is a link to a relevant article from the main part of this MS Society site. It contains a link to the NICE guidelines themselves.

https://www.mssociety.org.uk/get-involved/campaigns/campaigns-blog/2014/10/new-guideline-ms-what-does-it-mean

IN your shoes, I would be a bit fed up about having apparently fallen through the cracks as well. Although none of us knows for sure whether having taken a different path would have helped or hindered, of course.

Good luck with the Tecfidera.

Alison

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The NICE Guidelines for MS are at Overview | Multiple sclerosis in adults: management | Guidance | NICE and this gives you a link to the NICE MS page. Note that these are a rewrite of the earlier guidelines. Now remember that 8 years back there was only a limited choice of DMDs and the qualifications to be offered one were somewhat rigid (read as very strict), and you may not have qualified. Also, it would depend on how much cash the relevant PCT had. “Yes you qualify but we don’t have the money” This is the notorious postcode lottery - and it still happens no matter what NICE recommend. Geoff

these guidelines are a joke. for example.

Consider mindfulness‑based training, cognitive behavioural therapy or fatigue management for treating MS‑related fatigue.

I told the assessor about my fatigue and how bad it can be after 1pm, its usless for me, after that time i never go out and by 3pm am wiped out. I can barely do anything and go to bed by 5pm the latest. Also that i find it difficult to get into the city where the hospital is.

I was offered mindfulness based training, and after 4 months waiting got an appointment for it, start time 2PM, in the city for TWO HOURS for six weeks. I mean your aving a larf.

there was simply no way i could do that.

Then the specialist phsysio offered to take me swimming, i even bought myself a costume. that was nearly a year ago, still havent heard a thing, and still waiting to go lol.

As to support by specialist. I wrote to my MS nurse, and never heard a thing, when i queired it, i was told she had left.

I gave up, and now just deal with my PPMS on my own, with the help of my GP who keeps changing. the whole thing is a farce.

Oh i went to pain clinic that was a hoot. The bloke was great really knew his stuff, he said there is nothing i can give you, as you are sensitive to the drugs the neuro has given you (yes i have tried them all), they make me spaced out and incapable of life), he said there isnt anything, and he said all the drugs for MS just turn people into zombies and they loose the inclincation to move about and he agreed i could have 2mg diazepam for life although its frowned on, to help with the spasms and if i needed it during the day i could have it, but i usually only take it at night when i wake up in really bad nerve pain and spasms. thats it folks. The rest for me is pointless, whether its because i was born in 1951 i am not sure. but to be honest i would rather a younger person with MS with their life in front of them, had more chance of all these things.

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[quote=“Crazy Chick”]

these guidelines are a joke.

As to support by specialist. I wrote to my MS nurse, and never heard a thing, when i queired it, i was told she had left. [/quote] Yes! I have been going through the NICE Guidelines for Parkinsons. The include a suggestion that people should not be referred to a non-existant specialist. An attempt to refer my wife to the local Parkinsons nurse, produced the reply that “there is no-one in post”. Most of the local Parkinsons Society branches seem to have closed down, as well. Geoff

Its mad isnt it. I waited ages and ages for a physio then she promised me the earth swimming and stuff and just never heard from her. the guidelines are no good if they dont have the staff to implement them. My grandfather had parkinson way back when years and years ago and he had a lot of support then. Sorry to read your wife has it. xx

Thank you for all the input. It’s good to know there is a community here that removes the isolation found in thinking thoughts that before would remained silent in your head.

Craig

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I sometimes think these guidelines bear as much relation to reality as a child’s request for a pony in her letter to Santa. Nice to have in theory, certainly, but in practice unlikely to appear in the Christmas stocking.

Alison

Yep - we’re all in the same boat, Craig, that’s for sure!

Alison

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