Relatively new to Ataxia: I have not posted here... - Ataxia UK

Ataxia UK
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Relatively new to Ataxia


I have not posted here very often, just making queries really, and here is another one.

I have just received the PIP forms, and they have to be returned by 20th July. I have a social worker who said her team would fill them in, and just spoke to the Dr's, and any letters that are relative to ataxia, will be sorted. Is there anything else I should know? I am just asking , as have only this week, been put on the sick for a hernia, but that's another matter. I am just worried that if I get assessed, the so called health panel will NOT take the ataxia as a long term condition, but will just "live in the now". The form says that any general correspondence would not be helpful (like the info pack I got from Ataxia UK)

worried Peter from Harrogate

15 Replies

I wàs the same but I have now learnt that ataxia is classed as a long term condition.You mày be ònly awarded the lower rate of pip as I was but gets renewed 3yrs later mine is due next year and I have gotten worse so thinking I should get higher rate next time 😀

Hi Peter - we went through pip assessment last year when they changed my daughter over from DLA. You can get information online on how the assessment is " scored " and get a fair idea of if your are eligible . We were also worried , you hear a lot of criticism around pip and we were prepared to be defensive . The assessor guy was great ( also had a disability ) and actually she was awarded high rate mobility and care which was higher than her previous DLA- good luck !

Hi Peter we have just been through it. My advice is when answering the questions answer as if on a bad day when you have your assessment. Let your social worker team fill it in for you and get them to visit you at home for the actual assessment. Include the hernia also. As said before you can get a list off the internet about the descriptors. We we had to write an appeal and last week heard it got upheld. Our social work team arranged for a benefits advisor to handle our appeal and it sounds like your social worker is doing the same so sounds like you are in good hands. All the best

sadly, I will not have the hernia, as I just today got my date for the "op", its next wed

are you allowed to have another person with you at the assessment, as support?

My daughter was turned down for PIP and felt that the lady interviewing her at the assessment was not qualified enough to complete the claim. Eventually after building our own case and including letters from ALL consultants as evidence was the decision overturned. My daughter felt let down by the system.

peterallison in reply to Haddav

this is what I am afraid of, and is why I AM getting the bundled guide to ataxia, just to show the people concerned, I know its not what they want, BUT its what I want, as do not want to be let down, like you daughter was.

as a side line, are you able to take another person with you, when you attend an assessment?

Yes, you can take another person with you, have you got a letter from your neuroligist , if yes take a copy with you or send it to them, be calm, avoid eye contact, take your time answering questions, be polite, be yourself as if it is a bad day

thank you very much for the quick reply. I just asked, as my speech at times gets a tad slurred, and having a confident person with me, will make me more at ease...... hopefully

good luck, its not as bad as you think it will be

Just be totally honest and don't try to exaggerate anything get all your letters together from consultants care workers etc you should be fine more assessors now know about ataxia compared to a few years ago

thank you for the info

Yes take someone with you I spoke for my husband and he was penalised for making eye contact they said he didn't have difficulty communicating even when he stuttered when he did speak. As said by someone else here don't lie but always remember the questions are very leading and you need to remember to ALWAYS answer their questions as if it was how you feel on your worst day.

how on earth can one be penalised for "making eye contact"? its how us humans communicate, our body language, eye contact and verbally..... that was either said as a bit of humour, OR if a serious thing, then that would be a serious breach of something. If that was me, I would seriously "kick off", and the few friends I have, in the same situation, would take it VERY personally.., and do more we live in 2017 and not 1945

peace and love

Didn't want to be pessimistic just trying to show you the system can be punitive and inhuman at times. As I said we did get pip but had to go to appeal and tribunal. Try to get the person you take to speak for you if it's gonna stress you out. Sounds like you're well prepared letters from GP or neurology or specialist nurse would have much more weight than the pack about how your condition affects your day to day. I am sure your social worker can advise you and get them to send your care plan. All the best. Try not to fret just follow advice given all the best

I used my walker, looked around for a high enough chair with arms. Said my next car would be an automatic. Said could not use public transport, my sister drove me there and answered some questions for me. I got someone else to write on the form who knew me as my handwriting is illegible to me!

When asked about preparing a meal, scored zero, have not made a meal in years. Planning a trip was asked many times. That is what satnav is for. Be pessimistic with your answers. Having someone else there, corrected my enthusiastic answers. Your view of yourself might be better than others see you.

Best of luck at your interview. Ask when to expect results by letter. Even half PIP gets RFL car tax at 50%

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