Forum

MS the NHS and ageism

Do you think the NHS is ageist in its treatment of patients with MS? I was diagnosed just a few months short of my fiftieth birthday, although I had symptoms going back a number of years. The neurologist dithered a bit as to whether it was PPMS or SPMS, before settling on the latter. Either way the result was the same, no treatment, other than an ineffective course of steroids. The two other neurologists, one an MS specialist trotted out the same line and I’ve been discharged now. I sometimes wonder if I’d been twenty years younger if I would have been given the chance to try some of the drugs I’ve read about but have always been denied.

Yes!

It worries me a little. I was 43 when I had my first symptoms and was dx with RRMS just 3 months later so I was lucky and went straight onto DMDs as my symptoms were quite severe.

I’m now approaching 50 and on my second DMD. The information leaflet states that it has not been tested on over 65s and is not recommended for patients of this age. If it works for me as well as I hope it does and I am on it long term then what happens as I enter my 60s? Do they leave me on it and use me as a guinea pig or do they take me off it because we will be entering uncharted territory? Even worse, if it fails me as I approach my 60s, will they say there are no drugs that have been tested on people of that age and throw me on the scrap heap?

Surely, with the better care we receive now there must be more of us to test these drugs on in our OAP years so why are the drugs not tested on this age group? It probably comes down to cost - again!

So I agree with you, Flowerpot (and your dx is probably due to cost as well). I hope my neuro doesn’t retire while I still need his help because he’s happy to prescribe the best drug irrespective of cost.

Tracey x

I did reply to this once already…weird - whats the betting I give 2 replies now that basically say the same things with a few different words!

I said:

Yes!! And all other kinds of “ists” too!

I was diagnosed at 24 and within 3 days of first symptoms. I was given the line “youre young, no kids, in full time employment - an excellent cadidate for treatment”

My husband however is slightly older and was medically retired the year he was diagnosed with MS. He gets nothing - an annual review if he is very lucky! The GP does perscribe him some pain meds. Yet in my opinion he ismuch worse with MS than I am.

Its crazy and unfair.

I don’t feel I was discriminated against. Diagnosed at 44 - only borderline for DMDs - offered them, but declined.

I don’t feel anyone tried to block or dissuade me from DMDs on grounds of age - or any other reason. I felt completely free to choose them if I wanted. But AFTER I’d declined (so it didn’t influence me at all), my neuro freely admitted he’d have done the same. He’s not anti-DMDs at all, but didn’t think mine was a particularly compelling case. To his credit, he shut up about that 'til after the event, so as not to deter me if I really wanted them. I don’t think there was the faintest hint of discrimination. If I’d said yes, I’m sure he’d have prescribed them without hesitation, and never let on that it wouldn’t have been his choice.

Tina

x

It is not just MS patients…I have heard two consultants discussing their waiting lists whilst sitting in staff dining room.

One said he had halved his waiting list and was asked by the other if he had worked weekends to do it… "no said the first consultant, I just removed anyone over 70 "

This is the honest truth, I was a nurse sitting withing 3 feet of these men…several of us nurses heard clearly.

Plus when my hubby needed knee surgery at 45 he was rushed through due to being quote " a useful member of society " ie he was a full time worker.

Now at 67 the other knee needs surgery…he is told lets watch and wait…translated means you are at the bottom of the list and will stay there.

I have in my lifetime of nursing seen ageism over and over and feel extremely worried for the future

Hi I was dx PPMS and then my consultant revised it to SPMS. I never got any DMDs either but I like to think it is because damage has already been done. I don’t think I would have taken them if I had been offered. On the other hand my husband needed a hip replacement when he was 52 and got it no problem at all. I suppose it might have been a different story if he hadn’t been working. I do think there is some difficult decisions to make in the NHS, and it does worry me as I get older. Magsxx

Hi, I dont feel I have been a victim of ageism. am 61. BUT

One thing I have never felt good about is when I read here how so many people have been discharged after diagnosis. Why on earth is this?Okay there may be little or no treatment for them, but surely they should at least, be seen annually, for monitoring and referral to other NHS services, such as physio, continence, pain clincs etc.

I suppose I am living in cloud cuckoo land with this eh?

pollx

They’re discharged after diagnosis because the neurologists they see are rubbish.

To be fair Sewingchick, my neurologist was excellent. Its the CCG for my trust that made the decision, that if you are not on DMDs then you don’t have access to a neurologist or ms nurse.

x

Flowerpot

I too was diagnosed with SPMS in my fifties and take no drugs (other than amitriptyline for neuropathic pain and LDN which you can’t normally get on the NHS).

I know it is frustrating but I am afraid the research shows that there are, as yet, no effective disease modifying treatments for progressive forms of MS whether SPMS or PPMS. As it is not always easy to diagnose when somebody moves from RRMS to SPMS sometimes people remain on DMTs for quite a while after they become progressive. Also a minority have relapses even when progressive and therefore may be given DMTs. For most of us with progressive MS however it is pointless stuffing ourselves full of drugs which will do nothing for us. This is about the facts and the research, not ageism.

If you are denied drugs or treatments for symptoms or denied access to an MS Nurse that is a different matter. The MS Society’s current Treat Me Right Campaign covers access to drugs such as Fampyra and Sativex which seem to be out of reach for most of us, irrespective of age. The Society is also campaigning for everyone to have access to an MS Nurse.

I have been discharged by my neurologist but that is fine by me as I am being referred to the neurorehabilitation team here in Reading and also have easy access to an MS Nurse. I know that everyone is not so lucky and that is why we need to get behind the Treat Me Right campaign.

It is up to us to demand access to services and treatments. And if there is genuine ageism against older people with MS then let’s gather as much evidence as we can and engage the MS Society in campaigning against it. I am sure there is ageism against older patients within the NHS but let’s not imagine ageism where it doesn’t exist.

Hilary

Slightly off thread but my daughter aged 25 has a heart condition. At her last review dispite her tests revealing a worsening of her condition she was discharged from the consultant’s list with the comment “if you get any worse just see your GP and he can re-refer you” Must say I was dumb struck which for me is a rare event! I strongly believe she was just removed from the list just to meet targets. Outrageous.

Agreed Dinks, disgraceful.

Ell

I have had PPMS over twenty years and whilst there ain’t owt they can really do they keep trying. I love our NAH and think it is marvellous. You can always go privately if you think what they say is no good I know I ain’t ever going to improve PPMS just gets worse most drugs available are for RRMS . I am 58 and have seen the specialist today and because we have never seen each other before I am back next week for a full MOT he has booked me in for a one hour slot so her can fully assess me. Also have urology problem they do test after test to get it sorted.