PIP, DLA and AA
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New User wanting some advice re PIP please.

sooze77sooze77 Member Posts: 20 Courageous
I have spina bifida, split spine, tethered spinal cord and neuropathic bladder (unable to wee without catheters). I have recently made a claim for PIP. First time l have ever claimed anything so am very new to the system.

I have completed the form and have a face to face assessment next week. Do not really know what to expect. I walk with a stick as constant pain and the problem is my left leg can collapse at any given time without warning. I do not really know how to describe this in the assessment and how this would fair me with the mobility part of the award. Because of the collapsing leg, does this mean they would take it that l can not walk at all without risk?

I use aids at home such as shower seat, grab rail, extendable sponge for lower limbs as unable to bend, perching stool for cooking and prepping food etc.

Any advice or comments are gratefully appreciated. Thanks in advance.

Replies

  • CressidaCressida Member Posts: 700 Pioneering
    @sooze77 others are better qualified than me to help but I believe that the assessors will ask whether your aids to help came from an OT assessment or whether you bought them yourself. Remember PIP is all ability your to meet the 'descriptors' not about the diagnosis. 

    I claimed PIP for the first time this year and was successful so good luck with your claim.  

  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    HI and welcome,

    No, your collapsing leg will not be taken that you can't walk at all because you can walk. The moving around part of mobility PIP is about standing and putting at least 1 foot on the floor and moving, if you can do this then you can walk. It really depends how far you can walk repeatedly and reliably, as often as reasonably expected.

    Aids at home may score you points in the daily living part, if you need those aids but it does depend if you installed them yourself or whether they were installed and recommended by an Occupational Therapist. Extendable sponge possibly won't score you any points because people use this even if they don't have a disability.

    During the assessment you'll need to verify what you wrote on the form that you returned, as well as answer any additional questions that maybe asked.

    Good luck.

    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • Holly_DHolly_D Member Posts: 1 Listener
    I went through a hard PIP claim last year, had to take it to tribunal but eventually I won.

    Be aware that the moment you are on the property of the assessment office you will be watched & they will try to use anything they witness against you.
    So sit down asap, have someone with you who will stand & check in at the desk for you.

    My assessment was basically going through what I had put on the PIP form, over & over, the same type of questions just slightly different. It did my head in.

    If you’re feeling worn out when in there tell them you need to stop & ask for a break.
    You do not have to do the physical tests if you are in too much pain.
    Tell them no, it hurts too much & stick with it.

    Also they do have a thing to record the assessment but each place seems to have different rules.
    Check what rules they have before going & prepare what you need.
    Call them in advance asking for it to be set up if you need to.

    Since it’s your first assessment I personally would ask for it to be recorded & before posting off the completed PIP form I would scan it / take a picture of each page for your own records (if not you can request a copy).
    It’s best to keep a record of not just the assessment but your health issues too as unfortunately things can get worse as you age.

    For example, it’s been so long having side effects from my meds that I forgot that they are side effects.
    In reading my old DLA forms I was like: “Oh yeah, this isn’t me, it’s my meds”.
    It’s really useful to have those forms to see how my illness & side effects have progressed & changed over the years.
    Keeping them as a record can help if you need to take it to tribunal too.
    Especially if you get an awful assessor.
    Remember that at the moment (I've had to censor myself here due to the election & this poop neutrality thing) assessors are motivated by bonuses if they can keep claimants off/ on as low a payment as possible.
    So some will try to take as many points from you as possible.
    This is why I had to take my case to tribunal. I wish I had it recorded as it would have proven my case so easily.

    I know saying: “try not to get stressed” isn’t that useful as it’s a very stressful situation but do your best.
    Good luck x
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    @Holly_D unfortunately, they don't record PIP assessments for you, they will only record work capability assessments. If a claimant want to record their PIP assessment they will need to use their own appropriate recording equipment and get permission before the day of the assessment.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • sooze77sooze77 Member Posts: 20 Courageous
    Thanks lm confused as if they say you have to walk safely and reliably surely the fact my leg collapses means l can’t do this? 

    The aids I use were recommended by my consultant but were bought by myself. 

    Such an awful process you are made to feel like you’ve done something wrong at every stage, no wonder so many sadly give up! 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    You may not be able to walk safely and reliably but  based on what you've said above you can definitely walk.

    As the aids were bought by yourself and not recommended and installed by an OT (unless you have proof they were recommended by your consultant) then you may not score points for these. It maybe a case of choice rather than need.

    What you need to remember is that a lot of people successfully claim PIP without any problems at all but were rarely hear the good stories. Naturally those that have a decision they are happy with have no questions to ask so we don't hear their story.

    Have a read of this link it will hopefully give you more understanding of the PIP descriptors and what they mean.

    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • sooze77sooze77 Member Posts: 20 Courageous
    Thank you. Have had a read and now more confused than ever! I will see what happens. What will be will be, I suppose no point in worrying about it. Like you say you never hear good stories of which l am sure there are many. If l am not entitled l will accept that. Thank you for your help. 
  • mikehughescqmikehughescq Member Posts: 5,419 Disability Gamechanger
    Holly_D said:
    I went through a hard PIP claim last year, had to take it to tribunal but eventually I won.

    Be aware that the moment you are on the property of the assessment office you will be watched & they will try to use anything they witness against you.
    So sit down asap, have someone with you who will stand & check in at the desk for you.

    My assessment was basically going through what I had put on the PIP form, over & over, the same type of questions just slightly different. It did my head in.

    If you’re feeling worn out when in there tell them you need to stop & ask for a break.
    You do not have to do the physical tests if you are in too much pain.
    Tell them no, it hurts too much & stick with it.

    Also they do have a thing to record the assessment but each place seems to have different rules.
    Check what rules they have before going & prepare what you need.
    Call them in advance asking for it to be set up if you need to.

    Since it’s your first assessment I personally would ask for it to be recorded & before posting off the completed PIP form I would scan it / take a picture of each page for your own records (if not you can request a copy).
    It’s best to keep a record of not just the assessment but your health issues too as unfortunately things can get worse as you age.

    For example, it’s been so long having side effects from my meds that I forgot that they are side effects.
    In reading my old DLA forms I was like: “Oh yeah, this isn’t me, it’s my meds”.
    It’s really useful to have those forms to see how my illness & side effects have progressed & changed over the years.
    Keeping them as a record can help if you need to take it to tribunal too.
    Especially if you get an awful assessor.
    Remember that at the moment (I've had to censor myself here due to the election & this poop neutrality thing) assessors are motivated by bonuses if they can keep claimants off/ on as low a payment as possible.
    So some will try to take as many points from you as possible.
    This is why I had to take my case to tribunal. I wish I had it recorded as it would have proven my case so easily.

    I know saying: “try not to get stressed” isn’t that useful as it’s a very stressful situation but do your best.
    Good luck x
    The HCP assessors guidance is explicit in saying that the assessment starts outside the assessment centre.

    There are no bonuses for preventing a successful claim. That is an urban myth which gains currency through the likes of Facebook.

    Recording an assessment will never prove a case. There’s no such thing. At best it would reduce the credibility of the HCP report but that doesn’t get anyone PIP. PIP is awarded on a weighing up of all the evidence not the discrediting of one aspect.
  • sooze77sooze77 Member Posts: 20 Courageous
    Well had my f2f on Friday and went much better than l expected. Think l had built myself into such a state after reading all the horrendous stories. Will call for a copy of my assessor report next week. Lady was nice, very respectful and understanding. Will see what the outcome is. Thanks for the advice. 
  • Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,951 Scope community team
    I'm glad it wasn't as bad as you anticipated @sooze77. Best of luck with the decision and please let us know when you receive the assessment report. :)
    Senior Community Partner
    Scope

    If you have a few minutes to spare, we'd appreciate your feedback on our online community.
  • sooze77sooze77 Member Posts: 20 Courageous
    Ahh thank you. Merry Christmas! 
  • Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,951 Scope community team
    Merry Christmas to you too @sooze77!
    Senior Community Partner
    Scope

    If you have a few minutes to spare, we'd appreciate your feedback on our online community.
  • sooze77sooze77 Member Posts: 20 Courageous
    Well I have had a copy of the assessors report today. Recommended standard care and enhanced mobility. Let’s hope the DWP agree. Although maybe not the final outcome l am feeling very relieved. 
  • Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,951 Scope community team
    It's rare for them not to go with the assessor's report @sooze77, fingers crossed the DM will follow the recommendation!
    Senior Community Partner
    Scope

    If you have a few minutes to spare, we'd appreciate your feedback on our online community.
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