PIP help??

Mandy1983

Hi how are you all

Mandy1983

I'm on an on going award pip at enhanced for both daily living and mobility.i need help I got it 3 yrs ago along with a ds1500 they never took into account.im terminal.they reassessed me 3 months plus ago.examined me .along with my support of doctors and transplant specialists and gastro specialists who gave me a ds1500 renewed.he told pip as the others did I was permantly disabled ECT and they backed my claim.im a wheelchair user from community care at home. I've been left with no washing facilities or toileting facilities since 2015.No ramps or adaptations.now pip claim their result of my review was to assess me in my home after a long fight with my mp ringing them to get one done at home.Pip now say they habe lowered my on going award from 2015 to a standard rate of care as I have upper body strength?? All lies.they say they have gave me it for a longer period until 2024.yet I was given it indefinite on dla then transferred to pip for on going award in 2015.now they have taken the daily living to standard dropping my money obviously from the enhanced rate.ive a sever chrohns colitis .have a hospital bed and commode in living room.i also have stage four nafld with chirrhosis after multi organ failure due to azaithioprine toxicity. I'm so depressed tho no one can help me.ive no quality of life.im treated like an animal in my own home.im in constant pain.can pip do this to me? I was told they were in contempt of court for changing my award after only 3 yrs as on going was for 20 yrs.as you can have reviews but not have the award changed without going to court. Is this true please?? My advocate filled in a no change form and I sent it off before they asked me for a review.they have stopped my money without warning twice.its stopped now from Thursday.im paid weekly.can anyone help me please as I don't know how to respond to a mandatory reconsideration. My avacado is not available atm.im panicking as they took since begin July to give me their decision and I've only just got it.They now say I owe them the money back coz they dropped my award .what can I do .please help .

Ami2301

Hi @Mandy1983
Welcome to the community! You have come to the right place as many members of the community have been in a similar situation as yourself. I'm sure they will be more than happy to help you and will be in contact with you soon. Please try not to worry, we are here to help you

jane1973

@Mandy1983 hello there im so sorry you are going through this it really is awfull,  i opted for a mandatory reconsideration but it didnt change anything so im now going to appeal, have you any family or friends that could support you through this? Hopefully someone will be along soon to advise you better than i can, stay strong x

BenefitsTrainingCo

Mandy1983,

DWP can change a PIP award if there is evidence that their previous decision was wrong. They can't do it JUST because there is a further medical - they should show how the assessment led to the conclusion that you scored fewer points AND how they can show that this goes back to 2015 (ie rather than being a more recent change). 

So it is possible that the DWP decision hasn't taken account of some case law which says that a new assessment is not enough by itself to reduce an existing award of PIP. That's not contempt of court as such, but it may mean the new decision isn't lawful.

I'd suggest you request a mandatory reconsideration as soon as you can. If you have a current DS1500 then refer to that again (it's not for the DWP to decide what your prognosis is). In addition (and if your DS1500 isn't current for any reason) explain what points you should get. You can use the PIP self test to do this. Do talk about any pain the activities of PIP cause you, as this is relevant, plus whether the activities make you very tired, or take ages, or are not safe for you to do.

So the MR would have 2 parts:
1. you have changed my PIP following a review but you haven't explained sufficiently why the evidence from my recent assessment means the previous PIP decision was wrong
2. I believe I am entitled to PIP at the rate I was originally getting it because.... (tell them again about the DS1500 plus the points you should have scored).

As regards the overpayment they say you have to pay back, do NOT pay any of the money back whilst you are challenging the decision. Tell them in writing that you are not going to pay it back, and if they are making deductions from your benefit, tell them to stop because you are challenging the decision about your rate of PIP. I think that in any case, even if you were overpaid, it wasn't because you failed to report something or misrepresented anything. So they should NOT take it back. But for now, concentrate on challenging the decision about your entitlement. 

I hope you get this sorted out soon. As your advocate isn't available it may be worth trying to get some other help, eg from Citizens Advice or from your MP (the more people contact their MPs, the more likely we are to eventually get the PIP system improved, so this is worth considering). 

Will

Mandy1983

Will , I thank you for replying .I had read on your forum that an on going award means they can reasess you after ten years as on going award initially mean you can be assessed at any time but they cannot change the award within the ten year period without going to court first or they would be in contempt of court?? .That's why I asked you aswell as I've also been told that but I'm still confused about this as someone said their website which I found last night says and indefinite award is ten yrs but ONGOING with no time limit stated means 20 yrs as you can't get better but they can assess you at any time .? Also I filled a no change form in months before they assessed me with my advocate as there was NO CHANGE. I sent them proof of my d's 1500 and all specialists letters that had recently said I was permantly disabled and it's a life long condition and a GPS letter.They said they were not excepting it the d's 1500 and they wanted to just come and make sure I was on the correct money ? I was on highest of both compartments enhanced.pip from 2015i was previously on dla for indefinite aswell.since 2004.won by tribunal for just my mobility.so when I had multi organ failure in 2014 I was transferred to pip in 2015 for ONGOING .The reason they have gave me now for changing it is saying the nurse who did the at home assessment said I had upper body strength to drive a car .missed and LIED about ALOT of  other stuff out like i am wheelchair bound outside and need someone with me to push me and get my chair out and i have someone else on the insurance to drive for me as im ill and rarely drive the car let alone i couldnt pick my wheelchair  in or out of it .she said I cooked ,I don't as my carers do it for me and we all told her so.i have a chronic bowel disease and chrohns and only have access to a commode an hospital bed in my living room and I am incontinent both ways by community care at home pads ECT.she completely missed all this out.only gave me two points for it. She said I bathed and showered with an aid?? I told her my family also told her.. I don't have access to a shower as I don't have one and I haven't been given adaptations even though I've been passed for them ,so I have no bathing facilities at all.she ignored that aswell .I showed her how swollen I was.....she said in her letter I was not swollen at all .missed the pain bit out completely.I have Ra,oa, opa,fibromyalgia,and severely diabetic suffer depression yet she missed how it all affected me out.including transplant clinic ECT. She said all my letters I'd got of proof for her were not being taken into consideration. As she had read them and disagreed and I would not understand  that.next breath she says I understood everything well,?? Point is her reasons in this letter say in her opinion they find my upper body strong enough to be given now standard care  yet full points for mobility?? The aim of her visit was only to cut me down I know this as my family does .she made it very clear from the start she or the medical professionals were not taking into consideration my d's 1500.my letters were more than explanation of how my conditions affect me on a daily basis.specialists told those medical pip that I was never getting better .There was a law passed in 18 th June this year by the secretary of state minister Sarah saying their would be no more ssessments for those deemed too ill or never get better.they would not have any repeat assessments putting the vulnerable in such distress (like myself) with on going or indefinite awards.An award with no end date I am told cannot be changed unless they go to court it says on your forum?? Or they could be held in contempt. I superseded dla to pip.indefinate and on going.they can see I'm not getting better and can only get worse with evidence provided to them all the way through .with the latest evidence a few months ago of these letters I just cannot understand  how they can break these laws and get away with it.my mp has told them once to put my money back into play while they stopped it without warning.now they have stopped it again without warning yet they say it hasn't been stopped to the mp?? I should of been paid Thursday and I haven't had a penny ,no warning no nothing. The mp has said they haven't replied back to him?? Atm I am totally distraught with no cash .in stage 4 liver failure I need good food to feed my liver.high protein.with no warning they can treat me AN others appallingly. I'm disgusted.I am dying .even though they know and they are not taking into consideration my ds1500 that does not give anyone the right to treat me so inhumanly .I worked once for the terminally ill.i respected them.now I see mps doing nothing to help, no help out there.ive considered suicide on my worst days as I just can't cope with getting no one to actually help me with this adaptations and now harrassement of the pip .I also had to go through was which thankfully they took the d's into consideration. No solicitors will give me legal aid for adaptations  even with the d's 1500 as they say their full to capacity.who looks after us dying then ? I'm totally frustrated.im trapped in my home waiting for someone to help me out into the car.for appointments or shopping my wheelchair which I cannot self propell as the community care at home has told them.yet I'm still harassed .I just want to live the rest of my short life in peace.They have all made my life a living HELL. No respect dignity given and no care why they saved me I have no idea.Thank you for your help .I will take your advice and get back to you.please help with any advice further appreciated. Sorry for long text.i just had to get it off my chest 

Mandy1983

Oh by the way I forgot to mention my on going award and my Dali definate was both given me on my mobility only and even though they knew in 2015 I had a da 1500 on transfer to pip they still gave me an ONGOING AWARD BASED ON MY MOBILTY. SO THEY DISNT USE THE DS THEN EITHER.THE FACT I WAS AWARDED IT ON MY MOBILTY SUPERSEEDING DLA TO PIP I SONT THINK THEY CAN SROP ME OFF THE CARE AIDE WHEN THERE'S BEEN NO CHANGE IN MY CONDITION .AS when I was on dla for mobility it was on the fact I have fibromyalgia an all over pain and chronic fatigue auto immune ECT I still have it and there has been no change on transferring to pip .as on transfer they knew I had MULTI organ failure but still just gave it me on my mobility the award states .Do you have any further advice before I put in my mandatory appeal please WILL ? THANK YOU SO MUCH FOR YOUR HELP I just thought I would explain in more detail to you in case they were in contempt as your forum had said.The letters wrote by specialists a couple maths ago told them I get extremely tired with my complex conditions liver stage 4 cirrhosis ,Rhumatoid fibre ECT and I have chronic bowel and URTACARIA. All these things really distress me an cause me ALOT if pain and I have ALOT OF chronic reactions to things as they were told.from foods to tablets I am toxic to aswell which I'm unable to take as the doctors say I could die or would affect my liver aswell ..Thanks will xx

poppy123456

Hi,

I'm a little confused about the DS1500 part. This form is only filled in if you're terminally ill and only expected to live 6 months. It's not filled in for any other reasons and a life long condition that won't get better isn't one of the reasons.

Did the DWP contact you because they thought the 10 year award was incorrect? or did you report changes in your conditions?

Mandy1983

Hi my specialists  say the form is for anyone that's terminally ill prognosis and it even though your meant to die within 6 months it can be renewed every 3 years iff you live to that as a lot of people have conditions terminal and live beyond so it can be renewed if you get to 3 years  The fact I got terminal in 2015 doesn't change I'm told that I was awarded it on my mobillty for fibromyalgia an urticaria obviously walking ability as i wasnt then in a wheelchair but had MOBILITY  problems on dla .so you can renew a d's 1500 which first one was gave me in 2015 as they never MONITERED me on a drug an it was toxic to me and failed all my organs ECT I am lucky to still be here.so my daughter got me transferred to pip though I wasn't due to transfer officially until this year .They gave it me on my mobility  for the same reasons of walking i was told. only this time I  ended up in a wheelchair I am unable to propel due to lack of power that she is now claiming she thinks I have upper body power dispute the specialists telling her OTHERWISE now.i never reported changes as there was none.infact my money just got stopped a few months ago an mp got it reinstated because they said I needed an assessment to make sure I was on the correct money.a 3  months earlier than this I had been sent a no change form filled in with my avacate saying there had been no change .3 months later June they said I had to have this assessment to make sure I was on correct money it's now decided to drop me down to standard care as they haven't taken into account my bowel or evacuations or hep I need with pushing and wheenchaair or care given me.its scandalous .Thanks will xx I hope I've explained properly so u now umderstand

poppy123456

I must admit i've never heard of the DS1500 being issued unless you have a terminal illness and not expected to live more than 6 months. DWP have most likely questioned this. We do have an expert here with us and therefore i'm going to tag him and i'm sure he'll advise you further regarding this.

@Username_removed any advice on this please? Sorry to bother you!

Mandy1983

I know also quite a few people who have it renewed as I was ill in hospital for from one year to the next and met ALOT OF terminally ill who had has them renewed.its even on the d's 1500 website aswell about renewal of them x

Mandy1983

If they use the d's they will only award you for the time frame of 3 years as I've had it indefinitely to on going on superceedind it in not about to let them off with lowering an award when I'm terminal an will never get better as I would have to go through this iff  I allowed it all over again in 3 yrs.i just can't face that .I want my original award to stay .Do you  then lose your severe disability premiums  on was if they lower you to standard will ?? Thanks so much your help is great to talk about it x

poppy123456

SDP is payable on either rate of daily living PIP.

Mandy1983

THANKS poppy five just managed to get hold of my avacate who is doing a mandatory reconsideration for me .xx

Mandy1983

For those interested please read "d's 1500 explained" it clarifies the dwp except a terminal illness that means you have an illness and it cannot get better or get progressively worse.The form  states you are only expected to live for six months but is valid for 3 years and can be renewed.Basically because there are many people with different illnesses that live longer but could die at any point given their state of their terminal illness.As for example I am in stage 4 but they cannot say what date I'll die as no one knows.i am too weak to have a transplant as it's already been determined and written out to the dwp proof that I can't have operations or even anaesthetic by my specialists in letters to my gp.This puts me at risk category because as I have reoccurring pneumonia and such chronic conditions that I could die at any point even through a simple infection or bout of bronchitis .I am also restricted on medication as allergic to many and some can just stop my liver and make it fail again.like painkillers ECT. Hence GPS have to be very careful on my prescribing an run it through my transplant clinic first.i hope this helps .as I say go on the website I've given " ds1500 explained " to get a better picture if it ❤❤

Mandy1983

With total respect to you Mike about this information provided please read "d's 1500 explained " their rules NOT mine. I've had mine renewed and know others who have to weather you think that or not hun.its the truth and that page will explain it to you iff you look . I've stated.ohh and it's actually on your forum ( your own forum that is about the the on going period and meaning of indefinite awards of 10 years aswell.your own advises on here told one of the people on here I was actually reading it yesterday when I joined your site.. my friend investigate about the rules of it and the contempt of court bit .It's all been got from your website advises.aswell as you can google it and it comes up with how long these ongoing and indefinate awards are intended to last for amd when it is legally correct to have an assessment or then change an award within that period..google it and you will see ,aswell as take a look on your own website here please.i ask you to do this as it lead me to see this on your site when one of your advises where giving advice out yesterday and mentioned the contempt of court .This is exactly WHY I ASKED YOU ABOUT IT ASWELL ,AS ON FURTHER INVESTIGATION IT WENT ON TO SAY ON 18TH JUNE THIS YEAR SARAH DIVULGED PEOPLE WITH ONGOING ILLNESSES WOULD NOT BE ASKED TO DO REPEATED ASSESSMENTS AS IT CAUSES STRESS to the vulnerable.you can review anytime but that doesn't mean your allowed to have repeat assessments and the award can be changed either if there is no time limit on the award.both I'm saying applies to myself.Thers no time limit on my award .iff you look up on going awards and these facts were made by the supreme court not myself.as the same with indefinite.it has no end date. I'm not hear to upset anyone or argue either.im here to respectively ask you questions about what was found on your own site here yesterday also to ask about what I could do.i have obviously upset you .I don't talk rubbish though .I may be terminal but I would not say I have a ds1500 iff I didn't renewed.what would be the point ?? I know they can be renewed so I won't even try to argue that.i have found out ALOT OF legal things since I've been in this situation.i don't want to upset anyone as I've been upset enough .Anyway I'm amazed you say the contempt of court thing was rubbish actually because your advisor talked on here about it yesterday and about sarah and law .It's said before the dwp can change and award with no end date iff it's within the ten years ( tge indefinate award is valid for 10,yrs )they have to take you to court first. Read it yourself please.Then come back to me iff at all possible an explain what it means then?? Have a good day i look forward to your reply.i only wish I could show you my second d's 1500.aswell.just Google it and see for yourselves.id take 10 yrs over 3 any day. I want my award to stand.i may not know everything but I know what I've read about the law and Sarah since last night after I read it on your site.i do think you'll be amazed???

Mandy1983

Thank you for that Mike. No one had abused me about the contempt of court thing on here hun lol.I did read your advisor telling someone in convo about this this yesterday as I thought I must join and learn more.?? they mentioned the supreme court bit and the fact of you can be assessed is it? But not dropped down on the award until the due date comes without dwp going to court first ( confused now lol) as I had a no date which is classed in the regulations of dwp if you Google the odd later on as 10 yrs indefinate award and on going is classed as 20 yrs because you can't get better they say. Iff it's a progressive illness.This may help you too have a look at it.just type into your phone HOW LONG IS AN ONGOING AWARD FOR AND AN INDEFINATE AWARD FOR .IT EXPLAINS THE LAWS ECT ON IT TOO. PLEASEtype in also 18th June 2018 changes on pip assessments and review's.laws , You'll be amazed.i never have been to supreme caught.i think and can see I've confused you too .I'm sorry Mike.im not good at putting stuff down explaining stuff .? .my award was indefinate on dla and then transferred to on going on pip they wrote proof of entitlement out to me and stated I had got it for my walking ability.thats what I meant.They never gave it me for the d's 1500 in 2015 as they said they wouldn't except it..I hope I've explained it better now..my renewed ds1500 was given me a few months ago and they said the same thing."we're not excepting it" on a point after they had been given a filled in form of no change by my avacate months earlier.now I was going to do a mandatory reconsideration as you said before but he said he will do it an fit me in now and has given me a DATE  .im nervous as he filled in my other forms .Anywaythere has been no change in my conditions they can only get worse.but pip have dropped the care part and lied about the assessment and ignored how my illnesses affect me in their reasoning of dropping me.for instance I was told I didn't have to have a face to face  and they couldn't examine me on a ds1500. They did make me have one and they did examine me at home .Then went on to lie in their report of their conclusion to drop me They evaded how I suffer pain from chronic illnesses,the incontinence parts,the washing and bathing parts they said I have but I don't have any and they know this as she seen herself.she wrote I have upper strength which is a complete lie as I'm wheelchair user that has to be pushed as I can't self propel.it basically was them telling lies to demote my care to standard in stead of the enhanced.Truth is those lies have really annoyed me .I hope I've explained better.thanks Mike have a good evening xx

Mandy1983

THANKS for my badge too xx

Mandy1983

Ok I wasn't under a d's 1500 on Dla.its was an INDEFINATE AWARD. Based on one illness won unanimously by a tribunal.for years.award given for my fibromyalgia 

2. I then had multi organ failure in 2014 and in 2015 my family got me transferred to pip ONGOING AWARD. 3 .I got then a ds1500 first one.which pip refused to accept. They made my award on going based as in my letter on my mobility for walking aided or unaided .even though I was wheelchair user by this time
4.This year I was sent no change forms.my avacate filled them in with me as No change.
5 my money was stopped ,no got it back as it was with no notice and they decided to assess me .
6 had a home assessment ,nurse LIED about everything.Didnt take into account anything and told me that pips medical assessor were not accepting my renewed form which included ,
7 a second ds1500.signed off by the specialist who saved my life and 2 other specialists
8.pips decision 13weeks later I owe them money back and they have dropped my enhanced to standard
9.My illnesses are progressive.i need a transplant but I'm too ill to have one.
10.my care package for home put in place by the hospital is ignored by pip.
11.They have just done their lies again stopped my money without warning and my no is furious but cannot seem to get an answer from them.
12 I was on weekly money.They were trying to make me have it monthly,my own opinion is that's why I have no money now from PIP as they are trying to force me to have it monthly .alas obviously I've don't know either as yet why there's no money there .. .unless they are taking the money they now say I owe all at once OR PAYING ME IN A MONTH.
Either way I'm not going to sit back and let them change my award for .D.L.WHEN THERES BEEN NO CHANGE. I STILL HAVE MY ENHANCED MOBILITY.
13 .IFF THE 20 YR AWARD FOR ONGOING HAS NOW CHANGED, ISNT IT TRUE THAT I SHOULD COME UNDER THE OLD RULES 2014 AS THATS WHEN I TRANSFERRED TO PIP ONGOING? SO I WOULD STILL QUALIFY FOR IT BEING 20 YEARS I IMMAGINE.AM I CORRECT MIKE? 
14 .IF I AM CORRECT WHAT GIVES THEM THE RIGHT TO DROP MY AWARD ON D.LIVING ,WHEN I AM SO ILL AND WEAK AND THERE HAS BEEN NO CHANGE.??
15 WHAT WOULD YOU SAY TO THAT ?

poppy123456

Hi,

Please can you turn caps off as on the internet it's classed as shouting and is difficult to read, thank you.

You keep referring to your DLA award but it doesn't exist anymore. There are no 20 year ongoing awards, i believe the longest is 10 year ongoing. When you were transferred from DLA and awarded PIP what length of time did it state on your award letter?

As they refused the DS1500 claim then you will have been assessed normally.

Ticking the no change box and adding no further information wouldn't have done you any favours here. You should make sure you write as much information as possible and ignore the shortened version review forms.

It's not clear in your posts why you owe DWP money.

Mandy1983

I'm so sorry poppy I never knew about cap locks until you just said.
2.my award was ONGOING given on change over to pip.no time limit.
3 pip said I now owe them money because they took 13 weeks assessing my assessment to come to a decision to lower my daily living from enhanced to standard.Pip says in taking so long I have been overpaid.Thing is I rang them twice and got my mp to ring them asking how long I would have to wait.They were paying me enhanced rate as that was my award but they just took too long making their minds up to change it.They said there was backlogs of work and I had to be patient.
4.motorbility was pestering me to put a new order in for my car but I rang pip up as I was waiting for a decision  before doing so. I hope this clarifies things better for you.my previous dla award was indefinate.im told I come under the  rules As was at the time of them giving the awards out for ONGOING.if that's the case in 2014 ONGOING awards were then 20 yrs.As Mike just said and yourself they are now 10 yrs .ONGOING was my award in 2014.Thank you x