Ataxia UK
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When they come back to you after a couple of years to see if you're still the same, they can't take away your pay can they?

13 Replies

Hi Cara,

I have just received my letter after my face to face assessment and it has stayed the same for another 3 years unless my condition changes then I have to get in touch with them. Have you just had the form to fill in or have you got an assessment due?


Hiya, no I've had the assessment 2ish years ago, I'm just wondering the next time they see you (which will be next year for me) does the pay change as in does it go less even if your conditions the same?


I was wondering that when I filled in form and had the assessment again, because of the changes they have made to these benefits. I was awarded 0 points for mobility 3 years ago and this time I got 4 points. I do get daily living rate I got 8 points for that.that is what I got before. hope this helps.


Why did you have to take the assessment again? I thought you only had to fill the form out once


No, you have to start over each time like a fresh claim.


When I first applied in 2014 for PIP I had to fill form in and have face to face assessment when


Sorry sent before i had finished. What I was saying after that first time I was awarded PIP for 3 years then you have got to fill forms and have assessments again before your find out if you are awarded it again. they need to find out if your condition has changed.


Hi, unfortunately when they reassess you, your pip can stay at the same level, or they can decide your entitled to more or less.

My daughter's claim isn't due to be reassessed until next year but as she was only given low care and nothing for mobility even after mandotory reconsideration, I was advised to put a new claim in by her consultant as he had diagnosed her with a new condition.

He laughed when I told him the result of her pip and said the clues in the name with her having ataxia. How could they not give her anything for mobility?! Plus she had this other condition at the time also even you thought didn't know what it was! She has a problem with her blood pressure which causes her to collapse!

Anyway although we've asked for her claim to be assessed again because of her new diagnosis they've just set us a letter saying if we don't get the form back in to them within a few days her benefit can be stopped. Her claim isn't due to run out until next summer but they hold all the cards.

It is frustrating, when the assessor came out, she said my daughter failed the memory test which was obvious anyway, but then that was changed in the report. The other reasons for failing her were that she could use social media, that she had attended college, they ignored the bit where she left as she was so unwell after a few weeks! Also that she had been out to the cinema and the shop with a friend. This happened 3 times over the space of a year and was made to sound like she did it every day.

The assessors appear friendly but don't necessarily record what you say accurately, it can often be changed so be aware of that fact.

I'm hoping by putting in all of my daughters medical information from years ago this time and her current consultants letter they will award her full rate this time but they are no guarantees in this life.

Good luck with your claims but Keep all your doctors letters so you can send them in because pip will not bother to request them!

Take care everyone

Love lucy


Here is a guide to how the points are awarded,

as you will see if she can walk/stagger the distances mentioned she will only get the points within the categories stated. It's terribly mean for those who can walk a bit, rest and walk a bit more.


Thank you for that, it's helpful. It is a really challenging problem trying to get high mobility, especially when you conditions are variable from minute to minute. In my daughters case apart from her ataxia, one of the illnesses she has means she can lose consciousness when her blood pressure drops too low which is why we were told to reapply for pip for her as she is safer in a car than walking, and you can only apply for a car if you have high rate pip!

They are supposed to take account of variable conditions s but it doesn't seem like they do a lot of the time. She currently only gets low care , yet when she was younger and on dla she got high care and mobility. She now has more things diagnosed and gets less benefit which makes no sense!

Pip is certainly not as customer friendly as DLA which I am still on currently. My 22 year old son has advanced liver disease and he was still turned down for pip.

It is just an exhausting system and I think they just wait for you to run out of energy rather than appeal. That's why we didn't go to formal appeal last time. I was ill and we were too tired.

I would always advise people not to make that mistake as many people do win on appeal and they do backdate the money. I really regret not pushing my daughters as we did have a strong case.It does sap your energy though!

Talking of lack of energy though I need to have a bit of a sleep now so take care and thanks again for the link


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Remember to put the case of your worst days not the days when you can do more as that is what they will focus on.


I have just had a re-assessment and am waiting for the decision. This is 2 years after my original award and a year before it ends.

My husband has written to our MP to get him to ask why, given that my condition (Spinocerebellar ataxia type 6 (SCA6) ) is incurable, un-treatable and progressive (i.e. can only get worse) are the DWP wasting public money on a re-assessment (I am already on enhanced care and mobility).

If everyone in my position hassled their MP they might stop this nonsense.



Who knows though! HOPEFULLY not.

The whole process has been horrible - thank goodness I have Ian.

To date -

So on Wednesday 5th April (several months ago) I had my home assessment (horrible and lots of VERY personal questions). I cannot use the phone so my husband Ian rang last week to find out the latest. My case was not in the system!! After several calls by Ian they did find it but it is wrong and needs to be referred to a manager, so Ian asked to speak to one and they promised to ring back at 3pm (my husband has work to do and would be in a meeting. He explained and they said they would leave a message). None! He is ringing them back AGAIN!!

This whole process has been and is horrid. We have written to our MP and complained. I have an illness that will only get worse so what is their problem? x


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