It was a note in Boojum's blog that got me thinking about this, it's probably pure paranoia on my part but does anyone know if refusing treatment can lead to benefits being stopped?

Background in brief is that I unwillingly went on one of the "big 4" Disease Modifying MS treatments (basically major immunosuppressants, supposed to cut relapse rate) in June 2003. After a year of self injecting and nasty side-effects the only noticeable result of the treatment was that my relapse rate had actually increased, and I had sunken patches at my injection sites where the fat cells had been killed off By last July I'd had enough of it and decided to stop taking the damn med altogether, and I certainly haven't felt any worse for it.

Fast-forward to a couple of weeks ago, when I was called in for a brain/spinal MRI. After I'd had it I asked why they had wanted one (they don't usually do them other than for diagnostic purposes because they are so expensive for the NHS) and was told "if it shows a lot more damage has occured since the last one then the neuro will want you to go back on DM treatment"

I said that I'd just wait and see what the results were as they might be better than expected (thinking that would be a good argument that I didn't need DM treatment) but was then told "yes but if they are better than expected the neuro may feel that's because you were on treatment for a year and so you should go back on it"

FFS! I feel like I'm being set up here ("That's some catch, that catch 22") and I can see a bit of a war of wills on the horizon about the issue as I really don't want to go back on DM treatment, especially given what I've since read about how unwise it is to suppress the immune system long-term in this way.

I don't mind going against medical advice particularly as I feel that it's up to me what I do or don't put in my body, but what I am worried about is that I have a Disability Living Allowance check coming up this year, and they get a report from my neuro as part of that. So could they possibly argue that I am making myself worse by refusing treatment and take my DLA off me for that reason?

msmj

damn

Sorry if my ranting has worried you. I reckon in the case of actual, meaurable physical illness the choice of what meds you take is your prerogative, and you can't (or at least shouldn't be able to be) penalised for that - that's my gut instinct, but it's only a guess. I was only worried about my meds cos my illness isn't phyically measurable, so I was worried that if I didn't go back on the meds, then a report from my doc to the DSS could possibly be twisted by them into "he's not taking the medication, so he can't be that ill." Whether or not you take the medication recommended by the doctor, there is still documentable physical evidence of your illness, so even if they wanted to try and pull something, I honestly don't think they'd have a leg to stand on. I reckon it's only with mental illness that the question of refusal to take certain meds arises, cos that does bring up a nice little catch 22 for them to use - if you are so ill, why aren't you taking the drugs ? there's no evidence that you are ill, and your refusal to take medication suggests that you're a malingerer. get a job But I really don't think they could succesfully argue that kind of twisted logic with an illness that actually causes quantifiable changes in the body, because whe all's said and done, they can't argue with charts & X-rays and the like, so I think you'll be fine.

MS?MJ! hope you are alright. I think you will be, I have refused certain surgical procedures, and had no come-back.
But you Specialist Team sound very arrogant. Bugger what the specialist "wants", the real issue that he should be addressing is what you want. Its your body, and you alone have the right to decide what does and does not happen to it.
I do think some medics are just too damned arrogant. Need their grip adjusting.

It wasn't that you actually caused the worry Boojum, it had kicked around my head before but it was seeing your blog entry that reminded me of my original paranoia if you see what I mean.

I know where you're coming from with the mental/physical illness thing, but I also wonder if there's a bit of a case with me for them to say "well your neuro says taking these drugs will help you, but you won't take them therefore you are willfully letting yourself get worse that you have to be" or some such old twaddle. I just have a deep, deep mistrust of benefits peeps, IME they are always looking for a way to to stop paying out by any means necessary.

However, I will concede that after only 4 hours sleep I am feeling a bit fuddled so 'tis probably just me getting in a tizz about nowt - definately wouldn't be the first time

msmj

p.s. Just seen your post Arnold and yep, I'd say arrogant is a pretty apt description of the neuros I have seen. Can't help thinking they wouldn't be half as quick to fill themselves with the kind of toxic rubbish they push on us, and I know for a fact they are influenced by the drug companies in question as one of them is actually employed by them to administer the DM drug scheme in my area, as is my MS nurse. So much for impartial advice eh?

As far as I'm aware, could be wrong so don't quote me, the checklist in the medical assessment the dwp do contains a space to write medication down but no points are allocated to it. ie. medication is noted for information only.

I don't think your medication has any bearing on your eligibility for benefit.

You & me both

But I think the most important thing to remember is, even with Bliars pogrom on the sick, if you are genuinely too ill to work, then even if you are actively making your illness worse (not just passively creating a possibility thet it may worsen, which is what not taking meds you don't want to qualifies as), that doesn't change the fact that you are unable to work which is, ultimately, all you need to qualify for the related benefit. Sure, they can and do screw people with red tape, using the rules against them, but the flipside is that they are bound by those same rules themselves.

if all else fails, DEMAND a second opinion, if possible from a homoeopathic doctor - you have that right!
It is YOUR body, you say what's put in it! - if you have any problems with your quack, tell him where to shove it!

Indeed. And once you have appealed and won, they really do tend to back right off. I have not been called for a medical now in over, urm, blimey ......... 9 years now.
MS?MJ! I have found it pays to confront the arrogance, gently but firmly. Last time my GP said "I am putting you on..." I stopped him there and explained very quietly that I regard myself as the final arbiter of what I do or don't take; further, I explained that in my view doctors are advisory. He was very relieved, to my surprise. Turns out most patients expect the "Doc" to be a sort of Divine controller of health. Makes it very hard for them sometimes not to sound arrogant. Now when I go in he relaxes, sits back and we have a good old chew over what to do. Much better for both of us.
Maybe time to take your consultant aside? Remind him he is there not to control, but to be consulted for expert advice. Once he/she has done that, decisions over what takes place are ------ yours.

Hvyfuel: Yes I noticed that box when I first filled in the form and I think you are probably right that it has no bearing on points. I was more worried about what my neuro's report might say if I've gone against medical advice regarding treatment.

Boojum: What you said definately makes sense, I am actually able to work part time (3hrs a day) but my benefit is DLA which is just for general things-I-can't-do i.e. walk very far, lift heavy things etc etc so thinking about it I wouldn't be able to do those things regardless of whether or not I was on treatment.

Hopefully it'll all be OK, it's just that I've heard some horror stories on the MS boards about peeps getting their benefits cut for spurious reasons and I'm scared they'll do the same to me. Although I also heard horror stories about people not getting it in the first place and I was absolutely fine so hopefully mine is a straightforward case

msmj

Thanks Vlad and Arnold, it's only recently that I've started standing up to them a bit more and some docs do react quite well to it, whereas others seem to find it an insult, like I'm telling them how to do their job or something.

Good example was when I stopped the DM drug last year - one neuro and my MS nurse made out that it was a terrible decision, but then I saw a different neuro and explained why I wanted to stop and he went along with it quite nicely, he wasn't particularly happy about it but did say "it's your body so it's up to you" Like Arnold said he even seemed quite relieved that I was making the decision and he didn't have to - I just hope he's the one that writes the report for the DLA.

So I will definately stay calm and firm when I go to get the MRI results, and again if the DLA peeps get funny about it - it's not like they can prove the DM meds would help anyway, they've been using them for years now and they still can't decide if they actually work long-term or not!

msmj

if it comes to it, you can always lie, and say you are taking the meds they prescribe -just dont.

i was thinking of doing something similar recently, inasmuch as im sick of being drugged up to the eyeballs all the time and still constantly suicidal, so i decided to stop my meds...

its sent me well bonkers, these last couple of weeks with alsorts of very unsavoury side effects, but ironically, im getting better and my depression and anxiety has improved and im no longer suicidal!!!!!

if youve got a pushy doctor, either get another one, or failing that, lie!

i hope you get it all sorted out.

mu

hehehe, I did that once before as well MU but only with some tablets they were being really pushy about. The one they are talking about this time is injected, so they come and check your technique regularly, and peer at all your injection sites and all sorts, so I don't think I'd get away with it

Glad you're starting to feel better - it's no fun stopping brain meds, just coming off prozac did for me for months and months afterwards, it was really horrible

msmj

I refuse treatment ALL the time I have MS, HIV, HEP-C and chronic vascular disease They usually tell me what new drugs they want to put me on, I then go home do some research and then usually say NO! For some reason the SS and Benefits people have never bothered me in 10 years I'm sure they think I should be dead

My consultant fought hard to get me on the Pegasus trial for HEP-C and HIV taking Beta Interferon and some other drug, I told him NO after doing some research, he was not amused Fuck them that's what I say! I know my own body!!!!!! I did try some HIV anti viral drugs a few years back and I was sick for 5 months, qaulity is what I want now! I have recently started a NEW combination for my HIV, been doing good too! My consultant just about fell over when I said I was ready to start

I have also changed consultants twice! It's very important to me that I understand the Dr, but more important that I'm understood.

You're dead right Scotlander, we do know our own bodies. It's just difficult when they say things like "even though you don't feel any worse without DM treatment, the damage could be being done without you knowing until it's too late" because they can make you doubt yourself. But sod 'em, it's not them that have to live with the repercussions of their crappy treatments is it?


That bit really reminded me of when my neuro got me onto an american MS drug trial a couple of years back, it all sounded good until they told me that I'd have to have regular mammograms during the trial as the drug was linked to breast cancer FFS! Needless to say I didn't go ahead - I'd rather have the relapses, thanks

Glad you're doing well on your new drug combo

msmj

the body is the healer, not any remedy! - usually "chemicals" just interfere with the body's natural rhythms, and the natural healing powers of the body...........
We evolved as hunter/gatherers, living off fresh, pure, organic meats nuts and berries - we evolved to deal with natural substances - we did not evolve to be poisoned with crude chemicals...........and the sooner the medical profession starts rereading little things like the oath they take, the better - and start looking for REAL cures, which imho will be found in the natural world - some are already known, we need to find the rest!

have the mri results , if they want you to go on dm ijections say yes but its up to you isnt it if you stick yourself or not wink wink....

say what they want to hear msmj and do your own thing until it doesnt work for you.....

good luck

mj