93% to 50% Drop

Just reading on bbc that the Victoria Derbyshire programme made a freedom of information request and have published that people with MS getting benefits have dropped from 93% to 50% along with many others like Parkinson’s sufferers and many others.

Well not surprised but worried.


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Well Tories have to pay for tax cuts to the rich somehow and I suspect the poor and disadvantaged don’t vote for them, so they couldn’t care less.

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Parkinson’s UK now set up a dedicated team to deal with PIP benefits cases.

Perhaps the MS Society should do the same.


Don’t hold your breath!

I have MS, my wife has Parkinsons.
Parkinsons UK comes across as the better organised.
Maybe the problem with MS is that there are too many organisations competing for funding (MS Society, MS Trust, MS-UK come readily to mind).
One bigger organisation would surely have more clout.




i filled my form in with a lady from welfare rights advising me.

she told me that if i said that i could walk more than 20 metres, i would lose my motability car.

when i got home i read the letter from my ms nurse which i am going to enclose with the form.

horrified to read “carole completed the 25 metre timed walk in 19 seconds”

i’m going to go back to welfare rights before i post it.

my ms nurses are so helpful and supportive, i wonder if they are aware that the pigging timed walk means no motability car.


carole x

Hi Carole

I think before you get someone (e.g. an MS nurse) to write you a statement in support of your PIP or ESA application, you should make sure they understand the rules of the benefit concerned. So in the case of PIP, I would print out the CAB table of descriptors and the points associated with each activity: https://www.citizensadvice.org.uk/Global/Migrated_Documents/adviceguide/pip-9-table-of-activities-descriptors-and-points.pdf

That way, they understand the ramifications of what they’re writing. I’m in no way suggesting that they should lie on their statement, just that they should be aware of what they’re doing. They also need to keep in their minds that you should be able to do that walk (or other activity), reliably, safely and repeatedly. So the fact that maybe you once did a 25 metre walk in 19 seconds (if in fact this was correct, she might have been guessing the distance, or mistaking feet for metres) doesn’t mean you’ll be able to do it again, or that it was something you could only do safely once per day, or maybe that day was unusual.


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the difference was that it was in a hospital corridor and i even had to stop for a consultant to come out of his office!

just checked again and the letter said “twenty five metre timed walk 19 seconds” blimey that does sound fast!

i hadn’t asked for a letter in support of PIP but i am always copied into their reports to my gp.

anyway i’ll give her a ring.

i’m calmer now, not best pleased but calmer .

carole x

But this example indicates how important observations of healthcare professionals have become - the new Stasi.

Watch out Carole 25 metres in 19 seconds is as close to 3 miles per hour as makes no difference.

3 MPH is a normal walking speed for an able-bodied person - and you do not want to be in that category!

I would ask for the distance to be checked. Distances that long require a very long tape measure, and usually only a surveyor will have a really long measure (my longest is 50 ft, and that is a hangover from a previous life).

Then, if I was really feeling like an argument, I would want the stopwatch checked as well - and I have a range of stop-watches that I could do this with. Note that any good stopwatch should come with a certificate of accuracy, and the date on this - if they even have it - could be informative.

Challenge that timing!


I definitely think you should talk to your MS nurse about that statement. And get the, to change it. It sounds like what they’ve written is actually impossible for you. Therefore, something about the test was wrong. Either they’ve misjudged the distance, and from what Geoff has said, it’s actually quite likely the marked out distance is feet rather than metres, or the timing was wrong. But if you did in fact sprint 25 metres in 19 seconds, then you still need them to reword the letter. Just because you did it once does not mean that you can do it again. Definitely don’t send that letter with your clam form.