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Rare condition, given no points for PIP

annieblackannieblack Member Posts: 9 Listener
edited February 2018 in PIP, DLA and AA
Hi my daughter was born with a very rare condition lymphangiouma circumscripta of the tongue.this condition results in large swelling of her neck and tongue also bleeding of her tongue.when she was little we were told it was very rare and the only known case in UK.after numerous hospital admissions and laser treatment nothing helped her condition.she has been on dla benefit since the age of 8 she is now 35 .They said she had to change over to pip and had a assessment the results were she got no points whatsoever and lost her middle rate dla.we have just been to an appeal and results were the same no points.she suffers lots of pain and when she has a flare up it's very scary her tongue triples in size and there is a chance her airways will be obstructed.noone knows how often this can happen it can be several times a year and any cold or infection can set it off.at the end of the day this is a disability and shouldn't be scored on points she could do things what they are scoring her on all the 27 years she was on dla.this whole system is wrong they are awarding the wrong kind of categories this benefit and the real disabled people are losing the benefit altogether. 

Replies

  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    You can reapply for PIP.  Try and get some f2f advice locally,  Scope Helpline might be able to advise you about CAB or similar locally.

    Disabilities have to fit the PIP descriptors.  Claimants usually get some points for using aids especially if they struggle even using aids.  PIP points are awarded not for conditions themselves but how they affect the claimant's daily living and mobility.

    Disability Rights UK site has a good guide to all stages of PIP including a draft diary.  Include a 7 day diary with your claim.  There is also the Disability Rights Handbook available to buy from Disability Rights UK website.
  • mikehughescqmikehughescq Member Posts: 6,006 Disability Gamechanger
    Do not reapply for PIP as it will limit the length of any award off the back of your first claim which is not yet dead. It sounds to me as though ghe trununal erred in law by not taking a recent decision on how to interpret the word “safety” correctly. So, you need to apply for a statement of reasons AND record of proceedings and then get face to face advice about an application for leave to appeal to the upper tribunal.
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    The trouble with PIP is that it was badly thought out by people with absolutely no experience of disability as a whole, let alone rare cases. I have a unique problem and cannot locate another case anywhere in the world like it, which explains why it has no name I guess. I constantly worry about how I will be scored by PIP. It does seriously affect my physical mobility though so I suppose I will be all right.

    In your case I am not surprised the assessment failed but the appeal should have worked out better. However, I have come across a tribunal team in my area that outright refuse to find anyone disabled by the law definitions and are constantly overturned when people have the strength and courage to keep pursuing the case.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • mikehughescqmikehughescq Member Posts: 6,006 Disability Gamechanger

    There was plenty of user involvement and testing with PIP as there was with DLA but the government were determined to involve private providers and make their 20% savings. Granted, neither have exactly worked out well.

    However, I would not be worried about having something unique from a number of perspectives:

    1) No two people with the same condition have the same consequences so in that sense we are all unique.

    2) There is no requirement for you to have a diagnosis or a named condition for either AA, DLA or PIP. All that matters is that the symptoms are accepted as being real and derived from a mental or physical disablement.

    3) You will be scored on the consequences and impacts of your condition regardless of what it is or how unique it is.

    I am intrigued by your comment re: a "tribunal team". There's no such things. A panel of three is put together by HMCTS and whilst several members will eventually have worked together previously and recognise each other it's very unlikely that the same three would sit together twice let alone on a regular basis.


  • annieblackannieblack Member Posts: 9 Listener
    Thankyou all for the advice but this is all head banging to me.how can someone's benefit be taken away completely because they want to change the name to pip.she still has the same complaint.still suffers the same.sometimes can't eat or talk for days when she has a flare up.but just because she can make a sandwich she's not eligible anymore
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    It's not just a name change.  The Government (DWP) changed the criteria from DWP to PIP to make it more difficult for people to qualify for PIP than it was for DLA in order to withdraw benefit from as many disabled as possible to save money.  

    Other people have lost points because the assessor decided they could prepare a 'simple meal' unaided.   Your daughter probably would be awarded at least two points for food prep if she has to use adapted cutlery to make a sandwich.

    Your daughter has to show that her disabilities meet the relevant PIP descriptors.  That's the only way she'll get PIP points.   

    Disability Rights UK site (and other sites) have a list of the descriptors. Plus a draft diary that shows in practice how descriptors are met.

    And think about the aids your daughter has to use and put these down on the claim form and in the diary.

    Your daughter can reapply for PIP.

  • [Deleted User][Deleted User] Posts: 215 Listener
    @annieblack it's how your disability affects you it's not the illness itself
  • mikehughescqmikehughescq Member Posts: 6,006 Disability Gamechanger
    If you’ve been to an appeal and lost there’s no merit in reapplying until you have exhausted the appeals process and unless there’s a significant deterioration in the consequences. Get yourself face to face advice and ask for a statement of reasons and record of proceedings, if you’ve not already done so, with a view to appealing to the Upper Tribunal on a point of law. 

    You may have had a poor tribunal or it may just be that she does not qualify based on the amount of care needed. What points do you think she ought to have scored? 
  • annieblackannieblack Member Posts: 9 Listener
    It's very difficult to say how many points she could get we do not know when her flare ups are going to happen it just comes on.when this happens she won't go anywhere 1 because she can't face people because the swelling is so large she can't talk 2 because she is in a lot of pain and just wants to close the door on people seeing her and she just needs to rest.it can be life threatening if too swollen her airways are at risk of being affected.in my opinion it is a  discrimination of a disability to take off the disabled.im not being funny but my sister fits the bill for mental issues but she's nowhere near disabled she can cook she can bathe she can walk she can dress.where is the justice in this
  • annieblackannieblack Member Posts: 9 Listener
    Oh I forgot to mention my sister gets pip and a lot of people I know are feigni g having mental health issues to get the benefit.its easy to go to a doctor and say you are depressed and get prescribed tablets I've seen it happen.i would just like to make people aware I'm not having a go at the mental health patients here.i know they are some genuine cases of mental health Nd of course they need help.im saying I know people who are making a mockery of the system first hand and are in receipt of pip. Does this all mean people with real disabilities should just be forgotten about.
  • mikehughescqmikehughescq Member Posts: 6,006 Disability Gamechanger
    I’m afraid claiming that there are people making a mockery of the system whilst simultaneously claiming discrimination when you haven’t figured out what points she ought to score is doing you no favours whatsoever. Let’s hope no-one judges your daughter in the way you seem keen to judge others. There’s scant and unreliable evidence of what you describe beyond anecdotes which are usually laced with misplaced assumptions. Perhaps let’s not go there!!! Your misplaced anger would be better directed to asking yourself what the specifics of your case are.

    Disability benefits are not about disabilities. They are about the consequences. There’s no injustice in that. If you haven’t assessed how many points your daughter ought to score, and why, then you’re doing a disservice and have built no case for her to qualify. If you didn’t identify the specifc points and provide the evidence to support that then it’s wholly unrealistic to expect a decision maker or appeal tribunal to do so. They’re inquisitorial but they can’t perform miracles when they’ve been given nothing to work with!

    Apologies if this comes across as harsh but you need to urgently rethink your approach and get some face to face advice.
  • annieblackannieblack Member Posts: 9 Listener
    Yes it has come across as harsh I'm not directing anger at anyone I'm merely stating a fact of life which is true.i did point out I'm not directing it at people with mental issues I said I know for a fact this is happening because I have proof in my sister and 2 friends who receive pip and i guarentee you they  have no mental issues.yes I'm angry that my daughter lost her benefit  and just wanted to share my experience on here.bad thing I'm sorry I speak the truth l won't use this site again. 
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    @mikehughescq I am assuming here that you are connected to or work for the system in some way as your defence of a system that is flawed, staffed by people totally unsuitable and unqualified for the tasks they do and has been plainly shown not to work is ludicrous.

    I mentioned a team because the judge, doctor and social worker I faced 3 times in a row ALWAYS worked together at ALL times. They were well known to the CAB who once referred to them as the team for deciding that disability only started when you could no longer breathe. They ALWAYS either refused benefits or took them away.

    It was patently shown that the initial PIP questions made no allowance whatsoever for mental illness and there were changes made at that time as even the government agreed that some of the questions were totally unsuitable. Defending a system that has seen an increase of 600% in appeals and an overturn rate by those appeals rising form 5% to over 60% is pathetic and inexcusable. Waiting times for appeals has risen from 3 months to over 2 years ensuring that first time claimants have to cope for literally years with no support.

    I am sure the government is happy at the savings but if the trend continues perhaps this country will see another revolution, perhaps as bad as the 'War of the Roses'.

    Everyone knows that to be a good politician you have to be a consummate liar and also that government employees are in cushy jobs, protected by each other and with retirement benefits some people would kill for. No one is going to believe any of them when they claim they are "Doing their best".

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • mikehughescqmikehughescq Member Posts: 6,006 Disability Gamechanger
    Yes it has come across as harsh I'm not directing anger at anyone I'm merely stating a fact of life which is true.i did point out I'm not directing it at people with mental issues I said I know for a fact this is happening because I have proof in my sister and 2 friends who receive pip and i guarentee you they  have no mental issues.yes I'm angry that my daughter lost her benefit  and just wanted to share my experience on here.bad thing I'm sorry I speak the truth l won't use this site again. 
    So all you have is anecdotal then. Don’t suppose it occurred that maybe facing such a judgemental approach your sister is maybe reluctant to disclose everything to you! Just a thought.
  • mikehughescqmikehughescq Member Posts: 6,006 Disability Gamechanger

    Topkitten said:
    @mikehughescq I am assuming here that you are connected to or work for the system in some way as your defence of a system that is flawed, staffed by people totally unsuitable and unqualified for the tasks they do and has been plainly shown not to work is ludicrous.

    I mentioned a team because the judge, doctor and social worker I faced 3 times in a row ALWAYS worked together at ALL times. They were well known to the CAB who once referred to them as the team for deciding that disability only started when you could no longer breathe. They ALWAYS either refused benefits or took them away.

    It was patently shown that the initial PIP questions made no allowance whatsoever for mental illness and there were changes made at that time as even the government agreed that some of the questions were totally unsuitable. Defending a system that has seen an increase of 600% in appeals and an overturn rate by those appeals rising form 5% to over 60% is pathetic and inexcusable. Waiting times for appeals has risen from 3 months to over 2 years ensuring that first time claimants have to cope for literally years with no support.

    I am sure the government is happy at the savings but if the trend continues perhaps this country will see another revolution, perhaps as bad as the 'War of the Roses'.

    Everyone knows that to be a good politician you have to be a consummate liar and also that government employees are in cushy jobs, protected by each other and with retirement benefits some people would kill for. No one is going to believe any of them when they claim they are "Doing their best".

    TK
    @Topkitten You couldn’t be more wrong. I work in welfare rights and have done so for 32 years. At no point have I defended anything and nor would I wish to. I’m the person who challenged ESA to establish case law which says that you don’t have to make separate claims for contributory and means-tested. I’m the person who established case law which entitled people with agoraphobia to DLA mobility. I’m currently working on cases to establish that a sat nav is either a specialist navigation aid or the reg is meaningless and im working on a case to establish apps on a smart phone as similar. I think you’ll find little doubt whose side I’m on!

    What I have done is said that some of your statements were incorrect. I stand by that. 

    The only circumstances in which you could have the same tribunal repeatedly would be for entirely different benefits or if your appeal was part heard and adjourned. HMCTS do not list panels as “teams” in any area of the UK and never have. It’s entirely based on availability of individual members. Citizens Advice may be aware of the problems with those individual members and you may have been unlucky to get all three but it’s logistically near impossible for you to have what you describe unless it was for different benefits or involved adjournments where the case was part heard and the judge directed that it had to be heard by the same 3 because you can’t have a tribunal where 1 member has more knowledge than the others of the appellant at the outset.

    The PIP process is no poorer for mental ill health than it is for physical disability and sensory impairment as the many posts on here show. No changes were made as part of the consultations to improve that and none of the independent reports have produced any positive changes. Only case law has produced rule changes where the government made it worse and thus led to legal challenges like the RF “overwhelming psychological distress” case.

    The increase in the success rate of appeals is more a reversion to the norm. It’s normal for the success rate to be low with a new benefit until case law is established. It was the same with DLA, Income Support, Incapacity Benefit and ESA. It doesn’t in itself show how the benefit is just as an appeal process where nobody win wouldn’t show how good decision making is.

    So with all due respect you’re completely wrong in your assumptions about me; about what I said and in what you said in response.
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    Well lets start with the FACT that I applied for DLA 3 times. Had to appeal 3 times. Got exactly the same tribunal team 3 times. and got turned down twice and had minimum benefit removed the third time. Challenged it under law as the woman judge's statements were ridiculous and got a new appeal initiated by the clerk to the high court (not the court itself) who stated that the team consisting of the 3 people involved (his or her words not mine) were not allowed to participate. I finally got assessed correctly at the next appeal and received DLA.

    The statement I made about the government was reported in the press at the time. I assume then that if your statements are correct, which I find doubtful, then the government reneged in it's aims to correct the problems.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • NystagmiteNystagmite Member Posts: 609 Pioneering
    It's very difficult to say how many points she could get we do not know when her flare ups are going to happen it just comes on.when this happens she won't go anywhere 1 because she can't face people because the swelling is so large she can't talk 2 because she is in a lot of pain and just wants to close the door on people seeing her and she just needs to rest.it can be life threatening if too swollen her airways are at risk of being affected.in my opinion it is a  discrimination of a disability to take off the disabled.im not being funny but my sister fits the bill for mental issues but she's nowhere near disabled she can cook she can bathe she can walk she can dress.where is the justice in this
    It's meant to be how you are half the time. Have you (or your daughter) kept a diary for a month or two? The help your daughter needs just has to be reasonable and doesn't need to be help she's actually getting.

    Undauntedly when I was assessed, it was just based on that one day and a lot of assumptions were made that are physically impossible.
  • mikehughescqmikehughescq Member Posts: 6,006 Disability Gamechanger
    Topkitten said:
    Well lets start with the FACT that I applied for DLA 3 times. Had to appeal 3 times. Got exactly the same tribunal team 3 times. and got turned down twice and had minimum benefit removed the third time. Challenged it under law as the woman judge's statements were ridiculous and got a new appeal initiated by the clerk to the high court (not the court itself) who stated that the team consisting of the 3 people involved (his or her words not mine) were not allowed to participate. I finally got assessed correctly at the next appeal and received DLA.

    The statement I made about the government was reported in the press at the time. I assume then that if your statements are correct, which I find doubtful, then the government reneged in it's aims to correct the problems.

    TK
    So, it wasn’t that they worked together at all times. It was that they erroneously sat on a UT re-hearing having heard the FTT. Anyone who sits on an FTT which is subsequently re-heard, having been referred back for a re-hearing cannot sit on any subsequent FTT with the other 2 or with 2 different members. So, what you were given was a set aside on the basis of a clear procedural error. Fair enough but none of that evidences a panel which consistently sit as a team. They just happened to in your case. It’s also likely that you have been confused as to who made that decision because all letters from HMCTS come from a clerk to a tribunal rather than a judge. You’ll also find it definitely wasn’t the high court. You’d have been set aside by the FTT  or the UT.

    If you find it doubtful that someone working in welfare rights for 32 years would make correct statements about how PIP was introduced and progressed then you’re not really going to listen to anyone as far as I can tell. Why would you think I would do such a thing! Feel free to post any links up to demonstrate I am wrong.

    You were also poorly advised to make 3 claims, unless you’re referring to renewals.
  • annieblackannieblack Member Posts: 9 Listener
    Mikehughes  my sister will not keep anything from me  she is quite happy to share with me how easy it was to get pip.you are arrogant and don't seem to be on disabled peoples side's..you are quick to jump when people say anything bad about the government or pip itself.let me tell you something my sister laughs at the way this system is run now.like I said it's so easy for some to get pip and i know for a fact they are laughing all the way to the bank.i only came back on here to comment back to you.i do not wish to speak to you again .it popped up on my messages you had commented so i thought I'd have a look 

  • mikehughescqmikehughescq Member Posts: 6,006 Disability Gamechanger
    @annieblack the “side” I am on should be obvious from my role. There are huge negatives about the PIP process but huge positives for many groups about PIP itself. In light of the fact expenditure is running at about 118% of DLA when government were looking for a 20% cut I’d say that’s objective evidence that both statements are true. However...

    You don’t appear to have read my previous posts on the subject nor understood them. Whole host of evidence on this site alone that what you describe simply doesn’t square with anyone’s experience. Evidence of benefit fraud is misrepresented by DWP and the government and is way below stated levels. Still, generally people believe what they want to believe. I doubt anyone else on here believes anyone on here is laughing all the way to the bank as regards PIP and if you’re naive enough to believe your sister has committed fraud so easily then coming on here and saying so probably wasn’t the best move for her or you given that knowledge and failing to act are potential offences.
  • annieblackannieblack Member Posts: 9 Listener
    Mikehughes It's not up to me to act in any way regarding people I know who has got the pip award.i was stating a fact on how this system is run.i am only interested in fighting my daughter's corner I just can't understand how a panel can determine how my daughter's illness affects her when it is so rare and there isn't a cure.shes going to suffer for the rest of her life unless a cure is found.in other words how can someone speculate on her illness who knows nothing about it.was it because she looked ok.what are you trying to say I should report the many people I know who is receiving pip .I am no snitch .im not the one who's awarded them.im merely saying there are taking the benefit from people with real physical conditions.if they thought the mental health patients are being discriminated then so are the disabled  but they are taking the benefit from one category to give to another

  • [Deleted User][Deleted User] Posts: 215 Listener
    @annieblack Hi if your daughter can walk unaided , cook and bathe herself with no problem she will be given 0 points PIP is different to DLA , pip is how your condition affects you , DLA was a condition .
  • annieblackannieblack Member Posts: 9 Listener
    I know that budgie2 thankyou for the info .its just a corrupt system because they must expect disabled people to just accept this situation and just sit in a corner forgotten about.nothing has changed regarding their conditions just because they decided to point system it. Thanks budgie2
  • [Deleted User][Deleted User] Posts: 215 Listener
    @annieblack yes its a tough one 
  • mikehughescqmikehughescq Member Posts: 6,006 Disability Gamechanger
    Budgie2 said:
    @annieblack Hi if your daughter can walk unaided , cook and bathe herself with no problem she will be given 0 points PIP is different to DLA , pip is how your condition affects you , DLA was a condition .
    Er, DLA was also based on the impact of the condition not the condition itself. There are multiple changes but that’s not one of them.
  • mikehughescqmikehughescq Member Posts: 6,006 Disability Gamechanger
    Mikehughes It's not up to me to act in any way regarding people I know who has got the pip award.i was stating a fact on how this system is run.i am only interested in fighting my daughter's corner I just can't understand how a panel can determine how my daughter's illness affects her when it is so rare and there isn't a cure.shes going to suffer for the rest of her life unless a cure is found.in other words how can someone speculate on her illness who knows nothing about it.was it because she looked ok.what are you trying to say I should report the many people I know who is receiving pip .I am no snitch .im not the one who's awarded them.im merely saying there are taking the benefit from people with real physical conditions.if they thought the mental health patients are being discriminated then so are the disabled  but they are taking the benefit from one category to give to another

    You believe that if you wish but not only does the law say differently but you are factually incorrect in suggesting that anyone erroneously awarded benefit somehow prevents someone else from getting it. This forum should be no place for the sick arguing that there are somehow less deserving sick people. If you think that's the approach to get PIP or support with claiming PIP then you are sadly mistaken. As I said previously, evidence of PIP fraud is negligible at present. Feel free to prove me wrong. Anecdote is nothing more than anecdote and as I've again already said, given that fraud is so low, it's weird how everybody "knows somebody".
  • annieblackannieblack Member Posts: 9 Listener
    Mikehughes I am closing my discussions on here as from now.we seem to have our wires crossed.i do not want to get into an argument with anyone.we all have our own issues.i will wait to find a group who is able to fight these cases.good luck everybody x
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    DLA was also, though in a less formal way than PIP, about how conditions affect people, for example about mobility and help needed during the night, amongst other issues.  And the DWP-appointed doctor who came to my house completed a long assessment form, as did my GP.  Yes, for DLA I was assessed by a doctor who made a home visit as routine!  And DWP contacted my GP as routine!  Unlike with PIP where I was assessed at a centre by a paramedic (who looked as though she'd just got out of bed), plus it is difficult for people now to get home assessments.  At the centre I attended there were two claimants in wheelchairs, with their carers.
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Hi @annieblack, I just wanted to say how sorry I am to hear about your experiences with PIP. In case it helps, Citizens Advice have a more detailed breakdown of the points system and how points are awarded, in case it helps to clarify things.
  • [Deleted User][Deleted User] Posts: 215 Listener
    @mikehughescq ER you come across has a very angry person and not just on this post 
  • mikehughescqmikehughescq Member Posts: 6,006 Disability Gamechanger
    Far from it :) but one does wonder is there some reason to not be annoyed when someone believes that someone is not getting PIP and then launches into stuff about fraudsters including, allegedly, their own relative and somehow connects that to why PIP has not been awarded. It's abject nonsense and it needs to be challenged as it arises. Government has set the disabled against the sick and vice verse and it's a complete red herring and utter distraction to a failing process and poor advice.
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