husbands PIP claim got 0 points — Scope | Disability forum
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husbands PIP claim got 0 points

rosieTx Community member Posts: 3 Listener
Hi! Long term reader but first time poster. My husband has Huntington’s disease, he is age 30 but has had symptoms for 3 odd years up until now. He got his definitive diagnosis last May. He tried as hard as he could to carry on as normal but unfortunately work started getting hard due to physical symptoms and his mental health due to the disease is terrible. He suffers with OCD, anxiety depression and has considered suicide on multiple occasions. He is unstable in my opinion but as his wife and carer I do what’s possible to support him and help him access help. Despite taking an entire week filling out his PIP form on his behalf he has today been awarded 0 points for every single category and if I’m honest I’m flabbergasted. This is enough to send him over the edge if it cannot be rectified. I cannot believe the system can be so cruel to award him absolutely nothing for one of the most serious diseases there are, when we’ve clearly said what difficulties he has and how things are more difficult / take longer. 

We have a copy of the report and it largely focuses on the fact that he can still drive a car and therefore cannot be disabled. I think this is terrible! He’s driven for 13 odd years and at this point it’s muscle memory I’m sure. His mum has HD and drove late into the disease until she had a crash. There has been slight changes with his driving and the DVLA have been notified and we are waiting for an assessment. They have lied and said the DVLA have said he can drive fine.

basically what I’m getting at is there are SO many lies in the report. I’m going to take it all the way to tribunal if necessary but if anyone has some words of advice or encouragement please send them my way. Living with HD everyday in our house is so damn hard already without this extra pressure to prove it. We are under so much financial pressure as he is out of work and have a young family.


  • chiarieds
    chiarieds Community member Posts: 16,098 Disability Gamechanger
    edited January 13
    Hi @rosieTx - welcome to joining in with the community by beginning to post. I'm very sorry to read your husband has Huntington's disease, & the poor response you got with his PIP claim.
    This issue with driving is one of those standard 'cut & paste' comments that rarely have any basis in determining what difficulties, or not, a claimant actually has. All the more ludicrous as many people have been awarded PIP & drive. Your thoughts on this are mirrored in this discussion:
    Anyway, the important thing is this can be rectified. The first stage of appealing is a Mandatory Reconsideration (MR), where another decision maker will look at everything again. Altho the success rate of these isn't great, the success rate with appealing to a trbunal, if necessary, becomes 68%, which is far more hopeful.

    Please put your husband's decision letter away, & concentrate on where he should have gained points with his MR, which is best done in writing (a letter is fine).

    Remember PIP is not about any diagnosis, but rather how your disability affects certain activities of daily living &/mobility the majority of the time. Have a look again at the activities/descriptors that are looked at:

    With your MR you should say where you think he should have got points, & why giving a couple of recent, detailed examples as to the difficulty he facse for each applicable descriptor, i.e. when did it happen, where, what happened, did anyone see this, & were there any consequences to attempting/doing an activity?

    Say if he can't do an activity 'reliably,' i.e. safely, to an acceptable standard, repeat as often as one would reasonably expect, or if it takes him much longer than someone without a disability. See this mentioned at the end of the link above.

    This link may be helful in considering your husband's mental health, & still appropriate for a MR:

    You might also find this helpful to read through, altho it is rather lengthy:

    Put his name & National Insurance number on each page. Keep a copy, & get a free Certificate of Posting from your Post Office when sending it off.

    Please come back with any questions.

    Edited to add: I meant to mention try a benefit checker to see what other financial help may be possible. Try here:

  • rosieTx
    rosieTx Community member Posts: 3 Listener
    Thank you so much @chiarieds . The thing about driving was written word for word the same as the link you sent me so you are right, stock copy and paste answer. I find it offensive and hostile but now not so as it seems to be there go to reasoning to refuse PIP. I have saved the “comebacks” on the thread you sent and will use them in husbands MR. You are a star. 

    A lot of the other things on there are blatant lies so I’m planning to call PIP first thing Monday morning and request the transcript of the telephone assessment he had. I’ve also got photos of every page of his PIP form which I will print and highlight every relevant part of it that was disregarded.  

    The whole process of PIP tore me down the first time and it caught me off guard today when the letter came saying Nil award. It felt like all for nothing. If he was on his own without anyone to help with PIP I don’t know what he would do at this point. But I just stay strong and I think I’ve got this. I will talk to citizens advice too. 

    Thanks again!
  • chiarieds
    chiarieds Community member Posts: 16,098 Disability Gamechanger
    May I politely say why I hope you don't concentrate on your husband's decision letter & what I'll term the 'inaccuracies' it contains. Firstly, it would be very difficult to prove his assessor lied, as you don't know what they were thinking, nor their intent. Secondly, an assessment is for the assessor to get a better understanding of the claimant's difficulties, & form their own opinion. Yes, I know they can get it wrong, but they're not there to just write down what has been said. Lastly, if it gets to the tribunal stage, tribunals are very much aware of the often poor quality of assessor's reports.
    That said, if there are one or 2 irrefutable errors, then it's fine to mention them with your husband's MR, but leave it there.
    If you do call the DWP, please be aware you'll be speaking to a call handler, & unfortunately they sometimes give incorrect advice when they shouldn't be advising in the first place. Make it clear you'll be writing the MR, & don't let them start one by you ringing up. You wouldn't know if they'd be taking things down correctly, &, once a MR has started in this way, a decision could be made at any time.
    We do know how these decision letters can make you feel, so do try to concentrate on where he should have got points & exactly why, giving those detailed couple of real world examples (as to the difficulties he faced at the time of his assessment) as mentioned above. This is the way forward. If you want to complain about his assessment, then do make this a separate issue.
    You have got this, & you can do it. Even if unsuccessful with a MR, all that you will have by then written with it will be available for a tribunal to see, so make it count! Remember tribunals are not interested in assessor's reports, & won't want to discuss them.
  • rosieTx
    rosieTx Community member Posts: 3 Listener
    Thank you again @chiarieds - I don’t think I worded what I said right so my apologies. By lies I mean, for instance, they have said he can make financial decisions independently with no difficulty. This isn’t true and I manage the household finances solely because he finds anything to do with money too stressful. His HD leads to poor decision making and has previously got us into lots of debt so I oversee all the finances. We put all this on his form so I don’t understand how they came to that conclusion.

    we have also said he has balance and coordination issues and struggles to get in and out the bath without fall risks. More often than not he also needs help bathing. They have said he can get in and out of the bath with no issues which again is the complete opposite of what we have written. 

    You were of course right and I can’t know whether they were intentionally ignoring this information or maybe don’t understand the disease properly. Or maybe I didn’t word the “how your disability affects you” form right. Who knows. I’m just hoping I can put my best foot forward and get him the result he deserves now!


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