Forum

NICE GUIDELINES

I see from the Home Page NICE Guidelines say:

A yearly review by a specialist for all

and

Properly co-ordinated care

How do can I get this, I don’t get either at the moment.

If only!

Neither do I Flowerpot. I await with interest but I’m not holding my breath

I got dx to on monday at neuro appointment, got a letter on wed for next years appointment with neuro, Some areas mst be quicker than others in bringing in the guidelines. C

It’s about ten years since I had the privilege of seeing a consultant, I won’t be holding my breath though.

Cherrylips I believe if you’re RR you now get offered DMDs in that case you will need a consultant to prescribe. An awful lot of us have never had the option of DMDs and fall under the radar of a consultant. I am fortunate in that I do have an MS Nurse.

Jan x

1 Like

Thanks jan, keep me right, am a total.novice at all this. I am getting DMDs soon, I hope. C

Cherrylips that is only my experience of MS, others have different experiences. For years I wondered if I was the only one who didn’t have a consultant, till I joined this site about four months ago and I learnt i am one amongst many.

I believe everyone gets offered DMDs now, good luck with yours I hope it keeps your MS under control.

Take care Jan x

Thanks jan

As far as I know, the DMD prescribing criteria haven’t changed, so it’s still two relapses in two years, unless the MS Soc. haven’t updated their info elsewhere on this site: http://www.mssociety.org.uk/what-is-ms/treatments-and-therapies/licensed-disease-modifying-drugs.

​Add to that, the small print for the individual drugs usually specifies clinically significant relapses, which is not defined anywhere, so some consultants won’t count a minor, non-disabling relapse.

Having a consultant is not conditional on being on DMDs - at least, it might be in some parts of the country, but isn’t universally so. I’ve never been on DMDs, but have always had a consultant, although I don’t find our six-monthly meetings especially fruitful. I suppose if neither he nor I feel developments have forced a review of the DMD situation, there’s not a lot more to be said, really, except: “Well, take care of yourself, and see you again in six months. Ring if anything happens in the meantime!”

This time, I did agree to a two-month trial of Gababentin, which they’ve been trying to push on me ever since diagnosis, four years ago. I’ve never been convinced my most troubling pain is nerve pain, but finally agreed to a trial, just in case I’ve been wrong all these years, and it really might help. I even hoped I’d been an idiot to refuse it so long, as it would have been lovely just to get rid of the pain.

Unfortunately, apart from making me feel extremely intoxicated the first week, it’s doing nothing at all. If anything, I think I’ve been getting through even more conventional painkillers. So I’m not sure whether to stick it out for the whole two months, or cut my losses and start weaning off early. There doesn’t seem much point persevering with symptom relief if I honestly can’t feel the difference.

So I suppose all we’ve achieved is tried something, and proved it doesn’t work. What else can he do? Not sure it was worth the effort of getting there, although he is a nice man, and an interesting conversationalist. Why are all the interesting men off-limits, because they’re my doctor? If I’d met such an earnest young neurologist anywhere that wasn’t a Neurology Department, I’d have been delighted!

Tina

1 Like

I count myself as lucky in a lot of ways. I was diagnosed in just 3 months as my symptoms came on suddenly and couldn’t be attributable to anything else once the tests ruled out all the MS mimics. Due to having 2 significant relapses in that period I qualified for DMDs immediately and was referred to a prescribing centre, Addenbrooke’s, where my care has been excellent. I see a nurse every 6 months and the neuro annually (unless I desperately need to see him before the year is up). Of course, if I’ve started a new DMD I have more regular appointments as part of the monitoring process for the first year on the DMD. There are several nurses and if I leave a message they will ring me back the same day with advice and support. They even told me I could ring for support after my mum died which I thought was beyond their remit but shows how much they care about their patients.

I am pleased to see that NICE have included the phrase about properly co-ordinated care. I dread to think what my care would’ve been like if I had had to remain under the diagnosing hospital. They were happy to discharge me after a 3 day course of IV steroids when I could only just walk again but gave me no contact numbers for a nurse, no referral to physio and knew that I lived on my own with a 15 year old son. They also knew my hands were affected and my fatigue was overwhelming so caring for myself for the next few weeks while my body gradually recovered proved extremely difficult, not to mention the fact that I could not drive until my feet regained full feeling and my emotions were all over the place from the shock diagnosis and the steroids. Even when I returned a month later for a check-up I had to ask if there was someone I could talk to and then the neuro remembered to give me the leaflet about the local MS nurse and said he would make a referral to her! I often wonder if they are still treating MS patients in this way …

Tracey

If you want to see a neurologist, then you should go to your GP and ask him/her to refer you to one. I have posted on here (a while ago now) about neuros who are real experts in MS - you can ask your GP to refer you to one of these if you want.

I am very interested to know whether doctors have refused requests from the people who have posted about not seeing a neuro (which would be a bad thing) or whether those people have just never asked. You know what they say, if you don’t ask, you don’t get …

1 Like

My first neurologist was abrupt and apparently disinterested but I did see him every six months. My GP then, at my request referred me to a MS specialist fifty miles away. It was a generally more positive experience, at least he listened to me, and talked to me, but having gone straight to a dx of SPMS there was nothing on offer. I was making a 100 mile round trip to say “I’ve got worse” and get the reply, “I’ve still nothing to offer you.” I didn’t even get an annual review, there was eighteen months between my two final appointments with him. So I asked my GP to refer me back to my local hospital less than two miles away. There I saw neurologist number three, a nice enough chap, who declared, " I’ll see you once more in twelve months, because I never see a patient just once, then I’ll discharge you, we can’t do anything for you." Sure enough I got an appointment a year later and true to his word he discharged me. That was two years ago. Presumably discharging a patient gets him a tick in a box for a successful outcome. So, perhaps you’ll see why I don’t expect a review any time soon.

In my opinion this discharging people is more about politics. When it comes to people claiming ESA/PIP, getting supporting evidence will be a big problem for many of us. I depend solely on my gp, luckily for me she’s great!

My MS Nurse tells me I do not need a consultant. I told her I was concerned medication would become available and I would fall under the radar, she assures me this would not happen.

Jan x

I agree with you Blossom. My long term GP retired 18 months ago, he was a great support and I was sorry to see him go, fortunately his replacement is shaping up well and I’ve got confidence in him.

Falling under the radar worries me too, I don’t have an MS nurse.

I would be very worried if I didn’t have a nurse to call if necessary. I’m sure you have already spoken to your GP about this but if not have you considered his requesting a yearly or six monthly appointment with a Nurse?

Jan x

I have the telephone number for the MS nurses 25 miles away in another health authority area for advice, but I don’t have a named nurse who knows me, I’ve never been offered an appointment and from what other msers locally tell me it seems they don’t have time to offer reviews. I think the only patients seen regularly are those on DMDs so I don’t think there’s much point asking, but thanks for the advice.

To be fair when I’ve rung for advice they’ve usually, but not always, returned my calls and given advice over the phone.

There are already drugs available for progressive MS. The doctors know these drugs are safe but they are not sure how effective they are. I would take a safe drug hoping it was going to slow down progression.

I know this because I see a neuro who is one of the top people working on slowing down progression in MS. That’s why I think people should try and get a referral to a top neuro. But no-one has to do this - it is up to each person.

What I meant to say is, you should not expect MS nurses to know about drugs for progressive MS. The better neuros will know about them, the cr*p ones (and there are plenty of those out there) won’t know.

I have always been told there are no drugs available for progressive forms of MS.

Are any of these top neurologists in the north of England?

Are the drugs that only top neurologists know about expensive?

If so it’s likely to be a lottery whether they’d be prescribed.

I couldn’t even get funding locally for FES, so as someone said earlier, I’m not holding my breath!