hi everybody
do you all have a timed walk at each appointment?
that and a peg test?
i’ve always thought these were standard tests.
just want to warn you that the timed walk is 25 metres.
the enhanced rate of PIP is only for 20 metres max.
i could lose my motability car so just be careful.
carole x
The answer to both is never. I’ve never even seen the peg test (and had to look it up to find out what it was), I’ve never had a timed walk as part of a neurologist or MS nurse appointment either. The physios at Odstock have tried to get me to do a 10 metre walk but I don’t because I’m not trying to increase my walking: it’s impossible (I’ve tried, failed and made everything worse). In fact the only timed walk I’ve ever done is a 10 metre one.
This is one of the big problems with the NHS, the postcode lottery, and of course the end result when it comes to collecting evidence for DWP benefits.
They are comparing un-alike and unfair tests in order to make standardised decisions. It all seems so flipping random.
I am sorry you’ve had this experience Carole. It makes me bloody angry at the difference from one area to the next.
We should all be entitled to benefits once it’s clear that we have a progressive, disabling, permanent diagnosis. Obviously the decision becomes harder when people have such differing symptoms and when people are undiagnosed. And to some extent the DWP have to make some distinctions around our various levels of mobility and care needs. But this scattergun approach just does not work.
Sorry, you’re the one having had the crappy experience / report from the MS nurse, and I’m getting annoyed by it. It just flipping well in-bloody-fuiates me.
Sue x
Falls in MS are common but not always documented, with this new 20m rule one needs to mention every fall, bump and wobble to a GP or MS Nurse, because it is evidence that you cannot walk 20m or less safely.
If you fall report it.
PJ
The neurology department at Birmingham’s Queen Elizabeth hospital used to be in an old building where they had a measured 50m walk. You could actually do 100m in total, out and back. In those days I did a timed walk every time I saw my neuro. My walking speed certainly wouldn’t have had me doing 50m in a timely manner. I haven’t done a timed walk since the neurology department moved to the new building a few years ago. Either my neuro doesn’t think it’s necessary (my walking ability hadn’t changed much over the years), or they forgot to lay out a measured distance when the department was moved.
Thinking about it, my neuro and MS nurse have no way of knowing how far I can walk, other than what I tell them. The distance has dropped sharply since I last saw my neuro in April. The measured walks may feel like an imposition, but at least they give an ‘official’ record of what you can do. And if the distance is too much for you, say so. Then that will be on the record too.
thanks for your useful advice.
to be honest, i have mentioned the number of falls i have had.
oh double damn PIP
i have a lot of very inappropriate words which i won’t use in polite company.
in fact they roll off my tongue so easily, i can even do rhyming cusses,
like a rapper!
Dr Dre does the PIP rap?
carole x
ps making light of it won’t stop the F*g Ps from taking my car!
Gosh, I feel deprived!
I have never done a 25 metre timed walk - or a 9-hole peg test.
I only know about the peg test, as it is a fairly standard test for a range of psychological conditions.
I always thought that the standard timed walk was 25 ft.
The FES Clinic still use the 25 ft measure “as that is the one that the CCGs ask for”.
I assume that the change to 25 metres is either an admission that the 25 ft walk is not a sufficient test, or a change by some junior Civil Serpent who has been told to “go metric”, and really does not know the difference between feet and metres.
The test used my the physio at my local MS Therapy Centre is to rise from a chair, walk round a marker at about 12 feet (with whatever walking aid is normally used), return to the chair and sit down again.
This must be a better reflection of movement ability than just a straight walk - and is yet another area where the MS Soc could be campaigning for standardisation. The precise form of the test does not matter, as long as it reflects overall ability, and as long as it is standardised.
Geoff
Cheerful Dragon are you a wheelchair user?
If you can walk to the doctors appointment from the hospital car park (I’m sure they know the distance) there is no need to see a timed walk, but if you are in a wheelchair they might want to see how far you can walk as it indicates the progression of the disease.
However, this is not compulsory. If you feel unsafe or having a bad day don’t do it.
The same goes for ESA and PIP assessments - if you feel dizzy or too fatigued to walk - don’t walk.
Although I had high rate mobility DLA, I never used it for a car. One reason was that I preferred to have the money rather than the car, another was the fear of losing the vehicles if they changed my DLA rating.
I agree with your sentiments about PIP. I dropped from high rate mobility to standard rate, and yet my mobility is worse. If you feel like letting rip with a mouthful, say some for me. My vocabulary of expletives and cusses isn’t very good.
I’ve done a number of measured walks, all more than 25m, but I have never done a 9 hole peg test. I’d never heard of it till now. I think it’s something neurologists should do regularly. There’s more to MS than the ability to walk a given distance.
What is the purpose here??
Just say NO to testing MS - we suffer enough.
Remember hospital test are not compulsory - yet.
[quote=“PJday”] “MS Soc could be campaigning for standardisation.”
What is the purpose here??
Just say NO to testing MS - we suffer enough.
Remember hospital test are not compulsory - yet. [/quote]
You do seem to have a little problem understanding just what is meant by the word “test”.
If you refuse all testing, shall we start with blood tests.
Then shall we move on to hearing tests and eye tests.
All of these are for the benefit of the testee in that they are intended to help the clinicians diagnose what your problem is.
And, on the subject of diagnosis, how do you think MS is diagnosed?
MRI Scan? That is a very sophisticated test that may or may not be conclusive.
Lumbar puncture? That is another one.
Visually Evoked Potentials? Another one again …
Would you rather the neurologist went by the colour of your eyes, or your shirt, or your nail varnish?
Prejudices like those are illogical and emotive, but they are still tests.
So you suffer from dropped foot and have been recommended for an FES. If you want the Care Commisioning Group to pay, you need their funding. If it does not make enough difference to your walking, the funding is not available. So, what happens?
There is a test.The one I get (every year) is the timed 25 ft walk - with and without FES aid.
Ever heard of the Post Code Lottery? That is a quick test of eligibility for for funding. It is blatantly unfair, but it is a test. People who live in Wales and who want Sativex are quite happy to be tested this way, because they know they will pass. Now carry this thought on … …
Geoff
Geoff my comments are in the context of walking tests - we were discussing the lose of PIP mobility.
The NHS walking tests are not compulsory at the moment - but the DWP PIP application and ESA tests are.
The sharing of data between the DWP and NHS means, if ATOS observes you seem better on the day of a walking test or the GP notices you walked into the surgery a short distance from the drop off car park, could mean the lose of your car/mobility scooter even though you have an award for a fix time.
The ESA and PIP assessments are already deeply flawed “standardised tests”, and are being used to cut payments to the sick and disabled.
My point is - there is no therapeutic outcome here for MSers. I am opposed to work capability testing and using peg walking test to cut mobility payments.
PJ
OK, PJ, I accept that you were writing in the context of walking tests.
Your comment:
“The ESA and PIP assessments are already deeply flawed “standardised tests”, and are being used to cut payments to the sick and disabled.”
really proves my point.
Some years ago (in the days of the old forum) rizzo and I challenged the statistical basis of the old ESA test, and demonstrated that it was a load of insupportable rubbish. A few month later the whole basis of ESA assessment was changed Obviously, I do not know how many others challenged their pseudo-statistics to get this result.
It should be for the national societies (all of them, together) to properly assess the assessment procedure, and publicly challenge any flaws.
I doubt if the current ESA or PIP assessments could be considered as “standardised” by any scientific means.
The first thing you do when developing a test is to look at “test/re-test” reliability:
If a random sample of (say) “normal” office workers can cover a 25 metre distance in a mean of 19 seconds, then the same thing should happen with a few more random samples.
So, lets design a test - something anyone witha background in experimental or occupational psychology, human factors work, or cognitive ergonomics can do …
You take your random sample and give them a standard colour-blindness test.
You say “walk to that bookcase and bring back the green folder”
They are timed over the distance to the bookcase, for the time to pick up the folder, and the time to return.
And yes, this means setting things up before hand with distance markers that are not obvious, and will need three people with stop-watches.
Starting with the colour-blindness test will make it look like some sort of vision experiment.
But, do this a few times and you have data that will generate stuff like mean times and then standard deviations.
Now, you can test people with one stick, with two sticks, with 3- or 4- wheeled walkers, and even wheel chairs.
At this point you are able to say something like:
“No-one with two sticks could complete the task within 3 standard deviations of the mean able-bodied time”.
You are now on the way to a true test of mobility.
Maybe you think that a diagnosis of MS is sufficient to get a handout from the state.
“Sorry, I saw XXX compete in the Paralympics and she won despite MS. You are wasting my time”
Now prove otherwise!
Geoff
hi
geoff knows a lot about standardised tests.
pity he doesn’t work for the DWP.
as for that paralympian who has ms, she ROCKS!
she’d probably be gutted to know that ATOS are using her achievement to the detriment of other people with ms.
ah well there are good people and bad people in this world.
we belong to the good side.
carole x