hi sorry for asking for some advice but I was diagnosed about 4 to 5 months ago with cerebellar ataxia and I received pip of standard rate living allowance and standard mobility but my balance and gait has taken a turn for the worse already I cant walk more than 20 m without an aid my doctor has noticed my condition has changed and has referred me back to the neurologist do I tell the pip people my condition has worsened or is it to soon because I only received the payments 4 mouths ago thanks anyone all advice taken on board

12 Replies

  • Hi tino1234

    Thanks for your question.

    First of all never apologise for asking for advice! That is what the site is here for!

    I don't know the rules surrounding PIP as I am still on Disability Living Allowance (DLA). If you go to the website and scroll to the bottom it tells you how you can get help with PIP. I would advise doing this.

    My gut instinct is that you should tell them that your disorder has deteriorated, whatever the timescale, but I think you should hear that from someone who is more sure than I am.

    Best wishes


  • ok thanks for your reply I will look into it best wishes Harriet

  • always tell them if you get worse they can only say no

  • thanks I will I think you never know

  • Yes you do tell them them.

  • I will I think thank you

  • Try to get a case worker involved as this may form part of your renewed claim. I think the distance you can manage with an aid still places you in the standard mobility part of the award.

    You must then be not able to walk with aids for that distance, so at the moment you are at the beginning of this process, it may change quickly or things may settle for a while, but if you report into a case worker over the coming months and years you will have a record accumulated for them to see.

    By the way, you are lucky to have been given a diagnosis so early on, not many people do so do keep your consultant in the loop, you can ask to go back to see someone again if there are any worries.

    For my condition, which may or may not include ataxia as well as Mitochondrial Disease, I found a quad cane gave me effectively an extra 'foot' to walk with and the stability to lean on it when I lost my balance more and more. Got a really nice from with an ergo handle and a nice shade of pink(!)

    Be aware, though, that leaning too heavily into the quad cane over time may well damage your shoulder, when you would then have to think rollator or wheelchair.

    We have struggles as I am not allowed a wheelchair assessment until I can no longer walk indoors, it's OK to be housebound until that time comes. Consequently we have bought equipment, wheelchairs etc that have been unsuitable. We found that no matter which showroom we visited people will only sell what they stock regardless of how suitable to me it might be. My current wheelchair has nice big bouncy pneumatic front castors to help with vibration, only problem is hubby can't push it without the castors locking at odd angles, it's ok just doing straight flat smooth surfaces. BAck to the drawing board...

  • thank you again for the advice

  • Hi

    Just checked on the site, they have an online assessment guide that might help you.

    If you can manage to walk for more than a metre but less than 20 metres, either aided or with an aid, then you should get the 12 points needed for Higher rate PIP.

    You will probably need to see your neurologist again and get a letter to forward to DWP as part of your re-assessment. Do try to get a case worker assigned to yourself as they will be able to keep a record of communications and get in touch with the people at Capita (or whoever deals with your payment authorisation).

    If you honestly feel that you are unable to do the 20 meters test then be prepared to demonstrate this at appeal if it gets that far. I had a really hard time of it and almost gave up, but am mighty thankful that I didn't.

  • thank you ever so much for that I am going to see my neurologist soon so I will ask him see what he says either way thanks alot

  • Hi there,

    not sure what pip benefits are. I am in uk with cerebella ataxia and dont get any benefits but now have trouble walking and talking. Am I entitled to any? I am in my 60's and live alone and have real problems managing financially. I live alone.


  • hi sorry for the delay you should be entitled you have to talk to your gp and go from there hope that helps good luck

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