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Rare condition, given no points for PIP

annieblack

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.

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Comments

Matilda

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.

Topkitten

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

annieblack

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

Matilda

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]

@annieblack it's how your disability affects you it's not the illness itself

annieblack

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

annieblack

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.

annieblack

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.

Topkitten

@Username_removed 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

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

Nystagmite

annieblack said:

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.

annieblack

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

annieblack

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]

@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 .

annieblack

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]

@annieblack yes its a tough one

annieblack

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

Matilda

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_Alumni

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]

@Username_removed ER you come across has a very angry person and not just on this post