Last reply 1 year ago
What do people do when relapse occurs ?

Hi All

I had my most recent flare up in last few weeks but was in the US at the time for two weeks, I live in the UK. I went to emergency clinic on the advice of my friends wife who is a Neuro, they live in US, they doc at clinic suggested low dose steroids (oral) to see if it helped; they seem to help somewhat, however it did not fully recover on my return to UK. I was keen to see my own Neuro as soon as possible after return as I wanted to see if anything could be done for residual symptoms but also get MRI to see where I am at in general at this juncture.

I have been fortunate enough to have health insurance up until now and managed to put all my outpatient treatment through the insurance since late 2015, about half a dozen consultations and 3 MRIs. Never really had to use insurance before or the NHS for that matter, other than local GP for minor issues. I decided this time I would give the NHS route a go to test the waters and see what the protocol is for the future as my insurance cover will cease shortly.

My experience with NHS to say the least has been a nightmare, without going into details, just chasing down the progress of a referral was a nightmare and finally when my appointment came through, it is 6 months away; this is just appointment no MRI ! This process took nearly three weeks to get the appointment; needless to say after nearly two weeks of chasing I decided enough was enough and just went through the insurance and got an appointment within a week, after just one phone call. So with respect to the NHS and peoples, experience is this normal? – is there a different route to follow for MS relapse where your concerned of immediate damage; its very worrying for the future….

It just got me thinking, for folks in the UK, what do people do when they have a significant relapse and are concerned that if they don’t get immediate attention they may have permanent damage assuming you don’t have good insurance cover and rely on NHS ? I know sometimes or possibly most of the time they cannot do a lot, but steroids can be helpful sometimes and more generally just getting a follow up to see how your progressing at the time of the relapse and what the immediate future might hold in a timely matter is important, e.g. if you want to start drugs (if not on them).

Any thoughts appreciated..

Many thanks

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1 year ago

Amid the doom and gloom of NHS delays and underfunding, there is one beacon of hope: NHS guidelines allow the patient to choose which hospital they are treated at. Now that may not be a big deal if you’re happy with your local hospital. If there’s a problem, though, it’s a way round. I live in a rural area and my treatment at the hands of their neuro team was woeful and in fact I blame them for my (only) major relapse. That was in 2003 and back then I knew nothing of patient choice and the complaints procedure. Fortunately, my GP was on the case and referred me for a second opinion to the National Hospital, Queen Square, London. I remember her saying ‘I don’t even know their address but I do know that’s where you’ll be treated properly’. I travel 150 miles when I need to go, but that it a breeze compared to what happened to me locally. The National is not the only centre of excellence in London, there are others, all of them teaching hospitals, all with specialist MS neuros. PM me if you want further information.

1 year ago

Thanks @cameron will pm you for some more info…

Out of morbid curiosity, I just find it really odd that I can get to see my Neuro within 5 days of making the phone call through my insurance, yet the same Neuro not available for 6 months via NHS. It is simply a case that the Neuros decide how many patients they want to see private vs NHS? no doubt they are making more money via the private route.

I saw my Neurologist very late in 2015 and it was £200 via insurance per visit, my policy covers £204 per consultation, this time round the rates are gone up to £300 ! even via insurance I have to pay the balance. I will probably spend 15-20 mins with him max…..definitely made the wrong career choices lol

1 year ago

Hi @seanachai. I recognise everything you say about the NHS. To be honest, I started the ball rolling with a Private referral and MRI because I knew that my wellbeing could not cope with waiting for months for an appointment. It’s a shame that I, you and others have to do that.

However, the NHS does have the best neuros right at the cutting edge. Most Private neuros also work within the NHS too. After my initial Private appointment I then transferred into NHS. The quality of skill and expertise has been amazing; having an MS nurse is amazing, because through her I can get speedy access to asking the consultant questions on my behalf. BUT, my sister has MS and her Local Authority do not provide MS nurses which is a travesty. Postcode should not dictate quality of care.

The fact we get meds at no cost is amazing. The NHS could be amazing too, but it’s the systems of admin, priorities and a management which need tightly pulling together. For example, when I last saw my consultant for a 6 months check up, the required appointment, blood tests and MRI were spread out over three appointments spread across six weeks. By the time I saw her, had I not changed the appointment, my bloods and MRI could have been six weeks old and as we all know, it’s can change on a weekly basis with our particular affliction!

So yes, there is a long way to go with the NHS. But it’s all we have and that’s way in front of other countries. NHS swings and roundabouts, hey……

1 year ago

Hmm, Private versus the NHS in the UK? Well, going Private gives you hospitals that think they are hotels, whereas the NHS gives you hospitals, which patients expect to be hotels!

For what the NHS does, it’s great value for your money. But, like any major organisation, it’s stuffed full of managers, but lacks management.

I haven’t got the answers, but neither do the people presently paid to provide answers!

1 year ago

I should add that if you contact your MS Nurse if you’re having a “significant” relapse, they’d normally get you on Steroids pretty damned quick.

By significant, I mean life-impacting, either visually or mobility.

1 year ago


I’ve always had a positive experience with the NHS, it’s free and we’re lucky to have it really. Granted that the last year has been abit all over the place since diagnosis but I have a great GP and a lovely MS nurse now that is monitoring me. My diagnosis was quite quick considering how long some people take to get diagnosed.


1 year ago

@seanachai Hi, I have private cover through my mrs but they view my MS as a ore-existing condition & wont cover anything to do with it! NHS treatment really is just luck of the draw how well you’re looked after,but I have to be honest every neurologist & MS nurse I’ve been ‘under’ have been great. A good GP really helps too

Good luck mate,

1 year ago

The waiting time between the two is very different. I originally saw my neurologist privately and was offered an appointment that week. On the NHS the waiting list is really long but once you’re under a neurologist on the NHS you are assigned an MS nurse who are really good and sort out things like steroid prescriptions and physio. Although the wait to see a neurologist is really long, if you have a relapse they will try and see you sooner. When I had a relapse last year my nurse got my a cancellation appointment within two weeks.
Good luck with it all.
Heather, x

1 year ago

Thanks Heather, hopefully things will become a bit clearer this week.

1 year ago

Its a universal problem with MS or similare diseases patients. When they try to be taking care in a goverment hospital you take ten yrs to get your goal even here in Saudi zi used to see my neuro in uk every 6 months too MRI random times i didnt even choose. Appointments in Saudi every 6-8 months MRI once a year. NHS gave me tablets maybe they helpped 500mg tablets
Then last couple of years they said my bones body got damaged by it and since then im off steroids so since 2013
Bottom line government hospital dont take money from people they treat free so they know we still can not complain and they believe they are still giving us a favour.

1 year ago

Thanks nutshell88 et al

I think we need to drop the notion the NHS is free; bulk of funding is through our taxes…..

I am not here to slag off NHS, far from it; but as people have alluded to, positive experiences are a bit of lottery, made up of lots of factors…

Funding and staff shortages aside, I personally agree with some here in that it is mismanaged, from the middle all the way up to central government.

It is what it is I guess, so I have now just got to learn to work the system.

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