Last reply 4 months ago
Magic Wand Time – help please

Hello fellow Shifters,

I shan’t bore you with details. I was at a meeting recently about the variance in provision of MS services in the UK.

If you had to choose one thing – just one – to improve, what would it be?

When I was diagnosed in 1994 at 25y old I was just cut loose with nothing at all. So I did what any self-respecting person does and just ignored it and hoped it would go away.

A few examples to kick off:

Communications with your nurse?
Time between diagnosis and treatment?
Better leadership on drug choice?
Local patient networks?
A single point of contact to steer you through this new reality?

And so on. It doesn’t have to be any of the above. I am interested in what patients (us) want.

Thanks in advance for taking the time to think about it and share your ideas.

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4 months ago

For me it’s definitely time between diagnosis and treatment. I had my CIS (Optic Neuritis) in 1997 at 30 years old. Diagnosis was in 2001. I then had no treatment until about 2007. Years wasted. : (

4 months ago

@petlamb – so what part of the system, or lack thereof, do you feel made or contributed to that?

4 months ago

Communication with nurse

I haven’t been diagnosed a year, I’ve received treatment extremely fast but the communication with my ms nurse is a little disappointing. Being told things and not following through with them, I’m due my second round of Ocrevus on the 15th but I still haven’t heard anything about it, details etc. Not sure if I’m meant to hear anything about it? or if I’m just to know myself? Although I was told by a nurse who was looking after me that my ms nurse would be in contact about my next infusion but nothing (yet). So I’m guessing ive to be at the same hospital at the same time as my last infusion.

I know the nurses are extremely busy and have lots of others to look out for, but sometimes you just feel forgotten about.

4 months ago

More publicity to ensure awareness of this debilitating disease – especially in the young. I don’t think Joe Bloggs knows enough.
I’ve not heard it mentioned on radio or tv and while it’s not in itself a death sentence like some neurological conditions , it can devastate lives, families, & hopes for a future.

4 months ago

@lukezni I can imagine how frustrated you must feel.

There are 2 sides to this, and a third suggestion.

1 – V. Poor expectation management, nothing I can say to help that. There may be many reasons. Irrelevant as you are flailing around.

2- you are so fortunate to be on what all the data shows is the drug that works the best to retard the progress of MS.

3 – if possible just drop by the hospital in person to ‘check’ with the infusion tram that you intend to present yourself first thing on the 14th day after your first infusion.

Failing that, take the initiative and call around a bit. Be polite but don’t take no for an answer. Call your concultants NHS secretary and explain to them that you are having follow-up issues and unless you hear otherwise you will be present and correct 14 days from day 1.

Sometimes, only when you become an ‘issue’ to be dealt with do things happen as they should. If I wasn’t off ro Canada tomorrow I’d offer to ring round as your patient rep. I guarantee things would happen. I have dealt with the NHS as MS patient for 26y. In that time I have also had 10+ operations (active lifestyle, broken bones and needed much metalwork!) And I have worked at the NHS interface area of the pharmaceutical and IT industries.

Get on the phone, work your way around the system as the lost and worried patient.

Good luck.


4 months ago

@merfield – did you ever watch the West Wing?

The fact is that there are relatively few people with MS means that it isn’t that big a deal.

For us it is, understandably, everything.

People like easy things to understand, even if the are wrong. Heart Disease, Cancer, Obesity etc are all things people feel they ‘get’. MS is quite complicated and has had relatively little publicity, hence not ‘sexy’.

Remember the ice-bucket challenge? That is the exception that proves the rule. It came and went. No Internet craze now. Their donations spiked and have now tailed right off.

I am not sure of the answer.

4 months ago

I’d also like to throw in the MS nurse contact service closes at 1pm I feel that’s too early to end your form of contact. I’ve phoned previously at like 12pm to be told my nurse would get back to me but it got to 1pm and no call back so knowing they are closed and you won’t get a call back until the next day is a bit stressful and you may not even get a call back then

4 months ago

@dominics, no, I didn’t see WW – I guess it was featured on there. I just feel that a cure or the cause and cure, would more likely be forthcoming if it was more spoken about & ‘sexy’. All other shortcomings would then be negated.xx

4 months ago

Family genes must a have bearing, must give a predisposition to getting MS. But I’m no scientist so I know nothing. But other than in my case there seems to be a connection in many. xx

4 months ago

@dominics; I would change the way folks with SPMS/PP are jettisoned into the void and left without follow-up for years on end. I can’t remember if you and I are Shift friends or not, but would like to be as I have some strong views on this matter!

4 months ago

?? Just one ..🤔 .. but which one, there’s so many…GP, neurologist, nurses, follow up, communication, treatment availability & constancy, symptom management……

OK ..
As it’s the first point of contact for many people perhaps GP’s being more proactive in referral to rule out MS as first line.
It would be more cost effective than sending people off in every other direction for years..
We’ll certainly would have been for me. 😉

Perhaps some kind of “one stop” diagnostic clinic could be created ?

4 months ago

Great topic. In my area it seems everything is just for the newly diagnosed. Those who have had PPMS for 40 years get forgotten about.
The MS nurse seems to have far too many people to look after so despite trying their best, I don’t get much input from them either. I just muddle along the best I can.

4 months ago

SImple. Mental Health provision and support. I’ve never met a therapist or any other type of mental health professional who had any sort of specialisation in MS. There are no CPDs for helping us.

4 months ago

No-one – at any point – told me that I needed to be on medication – my Neurologist or my MS Nurse. No-one explained the urgency or had the ‘hit it hard and hit it fast’ approach. They’re the professionals – if they don’t know, how the hell was I supposed to find out that I needed medication? Since then, I have been on Avonex, Copaxone, Betaseron and Fingolimod.

4 months ago

I hope this means NHS and CQC & other evidence about poor neurology provision in the UK is going to be acted upon.

Personally:- my one thing would be to prevent UK neurologists doing their own thing (and for a lot of them that means not keeping up to date, and not doing the best thing for their patients) leading to the variance across the UK.

Similar was an issue in Oncology until the Cancer plan was introduced to prevent it (2000) then the Cancer Reform Strategy (2007) to improve services. The latter could be a starter for the MS services. It is not necessary to reinvent the wheel. There is so much Neurology could learn from Oncology I think.

PwMS need to get fast diagnosis and fast access the most up to date treatment. Bare minimum.
thanks for all that you’re doing @dominics

4 months ago

Just one thing – that, in my humblest of opinions, would be understanding. Not understanding as in sympathy, empathy and so on. Just an understanding that everyone who has MS of any “category” is different to everyone else but the one underlying common factor, or denominator, is Multiple Sclerosis. This sounds right in my head but the point – or just one thing – I am trying to make is that those in authority (the government) need to understand that is exists and is not categorised to the vacuous, one could almost define as loaded, questions they misunderstand!
Sorry, that may all have sounded angry but it’s not how I felt when I typed.

4 months ago

Here are some books read them, from the ms nurse and bye bye.
So had to complain to get an appointment with neurologist.
Eventually got one… here is a list of meds pick one, but if it’s past this line we don’t do them here, and you have to wait a year to be considered in an other hospital. Bye bye.
So I picked Tecfidera.
So almost a year later got told recently that if I don’t get my bloods checked no meds, pointed out that they filled the forms out wrong….
Oh well here’s some more, we have rules we have to follow, so get your bloods checked or no more Meds.
You couldn’t make it up.

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