Pip renewal after being awarded enhanced care at tribunal

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I am my daughters appointee and carer (she is 23)..she is an extremely rare (she is only person in world at the stage her illness is at) 10yrs ago she claimed dla, had to take it to tribunal and won, high rate daily living component. When it came to being transfered over to pip, she had a face to face and got awarded 2 points!!!!... Once again, took it to tribunal and once again got exactly same outcome, enhanced care on pip. The 2nd trial was long (over 1hr) and had to be stopped half way through for my daughter to be seen to as she needed medical attention/care. Her renewal is now due and i am windering if anyone can sged abit of light on this...surely my daughter isnt going to have to endure another f2f or even worse another tribunal ( same outcome in both dla and pip tribunals) surely she has proven time and time again that she needs full time care..has anyone else been in this situation?? I need to be able to give my daughter some answers as she is understandly getting extremely anxious about this!!! Thanks for reading guys.

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  • Posted

    Hi,

    To start with you can't compare DLA to PIP because they're both completely different benefits, even though she was awarded highest care on each of them they're still completely different.

    Even for a review you will still need to send in as much evidence as possible. Once they have the form and the evidence they will then decide if another assessment is needed. Most people have to have an assessment, even for a review. It's extremely rare to have a paper based assessment.

    My advice to you both is to expect to have a face 2 face assessment and if you have a paper based one, then it's great news. No one can answer your questions as to whether a face to face assessment will be needed or not but you have to prepare to expect one. Aim to send as much evidence as possible, that way you're doing everything you can to try to avoid one.

    Good luck.

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    • Posted

      One thing i forgot to add is with PIP the award lengths are shorter than they were for DLA. There's no life time award for PIP so these reviews will happen regularly, depending on the award length.

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    • Posted

      As i have been an appointee for over ten yrs for both dla and pip i do thoroughly understand the difference between the two, i understand the points system and how pip is needed help once a day opposed to the most of day for dla...i was not saying they are similar i was merely saying that in two totally different benefits, we got the same result..i was only asking if anyone had to endure a tribunal again on a renewal for pip...i do know how the pip system works and represent alot of people...i have never represented in a renewal from a tribunal win before and this is why i was asking..however it just seems that the renewal system is just same as a new claim system...i will take it as she has to do it all again, which will be a travesty to have to prove herself in court for a 3rd time, especially when there will never be a change, she will never get better and will never be able to live independately..i am also unsure as to why she has never had the yearly checks like most people on pip have...thankyou for your reply though

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    • Posted

      As your daughter is 23 then you wouldn't have been an appointee for her when she was 13. Children under the age of 16 do not have an appointee because they are under 16. Once they reach 16 then the appointee takes over, once the forms are filled in.

      PIP isn't about needing help once a day, it's about needing the help at least 50% of the time but i won't argue with you.  You posted wanting advice about whether another face 2 face assessment is needed and i advised you correctly. Most people have to have these.

      I have heard of people having to take a PIP decision to Tribunal for the 2nd time yes. Reviews aren't always done every year for PIP, like i said it depends on the award length. Award lengths can be anything from 2-10 years with reviews done 1 year before the award is due to end. Sometimes those that have been awarded by a Tribunal will not have a review 1 year before, they will be sent a letter 3 months before the award is due to end.

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    • Posted

      Yes that is corect i was appointee from her being 16..my mistake..by me saying ten yrs i merely meant she has been fighting for her right to these benefits for over ten yrs...i sould have referred to a generalisation at the beginning of my reply and said carer/appointee in last ten years.
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    • Posted

      No worries. It is very sad that we have to fight for what we're entitled to, i totally agree with you. I'm my daughters appointee and she will never be able to live independently either and her review is also after 1 year. Thankfully i didn't have to take it to Tribunal for her and she was awarded first time.

      Good luck and i really do hope you won't have to fight this time.

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    • Posted

      To be fair i thoroughly understood the first ime it went to tribunal as her illness is that rare most gps never see a case of it in their entire medical careers, its also prinarily found in the elderly so by time they picked it up it was at such an advance stage that all operations failed and as its not being actively researched its very unlikely that any kind of cure will be found..then the switch over to pip again a new benefit so understood a 2nd tribunal..she now has to live off machines, sleep on hydrolic bed riser and has to be monitored at all times when resting as she wil choke if in certain resting positions and so on and so on..thankyou for taking the time to reply especially with u being in a similar boat i thoroughly appreciate you taking the time out to help...massively appreciated x
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    • Posted

      Hi Alison can't add anything else to your post as Denise has put it exactly how it is, like she said DLA was actually much easier to get an award than PIP but obviously things change.

      I hope your daughter manages to get through this without too much stress, we wish.

      Do you mind me asking what your daughter suffers with.

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    • Posted

      She as achalasia...its a narrowing of the oesophagus, completely uncurable and causing regurgitation of anything taken orally whether thats food, hydration or meds...there are two medical routes to help eleviate symtoms but only temporary...daisys has all these ops (twice) and all have been immediate failures..her oesphagus is now completely closed and she cant even swallow her own saliva what it has to be regurgitated back up..regurgitation is totally different from vomit..vomit is from the stomach, daisy regurgitates from the oesphagus ..when daisy started being ill she was accussed of all sorts from it being psychological to it being an eating disorder..but i stuck to my guns an demanded a baruim swallow it come to light that she had this disease at 13yrs old but by then ( iit took me over a year to olead with them to do tests) it had advanced so much that there is nothing left for her now medically...it causes so many side effects..mimics heart attacks, causes fluid on the lungs, exhaustion etc etc...she is now on a owrmanent peg, for everything(eating, drinking, taking medication etc )...i could go on and on but u get general idea..nhs did apologise and said with it beimg so rare they really under estimated the speed in which it progresses, that this is her for life now...in other countries america and australia, its immediate ops uoon diagnoses..but not in england..she ia the only recorded person for treatment to fail on, in the world...upon this happening nhs had to train me in peg, hydrolic machinery and how to get her out of apserating wen displaying signs..i had to sign lots of things before they wiuld release her from hospital into my care and it really is a 24hr a day job..i could go into mich more detail but i would be here all night so i hope you get the jist of what i am saying...to prove twice in two completely different benefits, which gave the same outcome..i really dont know if daisy cold be put through another trial not for a 3rd time...tribunal were livid it had been brought to court a 3nd time and praised me for the unquestionabble evidence supplied by medics involved..and now it seems she may have to do it all again a 3rd time..(i cannot stress enough that i do know the difference between pip and dla) i merely mention both as we got the same result for both seperate cases and thats all..thankyou for replying and thakyou for asking about my daughters illness..all massively appreciated xx
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    • Posted

      I apologise for all spelling mistakes as well..i am on my fone so my eyes are seeing it big enough ( old age for ya that!!) but i hope u get my drift x

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    • Posted

      Nhs also flew an achalsia exoert from australia in to help..he did her last hellars procedure and was absolitley dumbfounded that the op failed immediately..so she has had all experts and still no success..she has no life as its all dealing with heart attack sypmtoms daily for around 3hrs at a time, which then causes the exhaustion, her body doesnt like any kind of movemnet and when she gets the chest pains, it triggers the regurgitation..she as been asked to leave public transoort as she is upsetting other passengers as it causes her to foam at thw mouth when starting to aspirate and peopl think she is on drugs..she was abudding rigby player at 13, that good she was pick to train with womans england team once she hit 15..she is a very clever lady and got all her gsces, from hospital school and then went on to complete A LEVELS with the help of disability team and private room etc..and she cant even walk down street now without it aggrevating symptoms..such a sad life changing stage she as been at since diagnoses..lost all her teenage urs as was in hospital for most of them..to be told..and these are the exact words..so sorry nothing as worked, we underestimated the severity and quckness of the disease but we will train your mum up to provide safe care and use of equipment and go home and spend time with your family!!!!..and now she has to fight every two yrs for something that is at end of line medical wise and just upkeep care to keep her alive and not not choke..i feel so much for her but i will fight for her like i have doen for over ten years with evwry last breaht i have..my local mp as shown an interest so may even have to go down that route if i have too..x
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    • Posted

      That sounds horrendous, I couldn't cope with it as your doing, it's possible that when you first claimed DLA it wasn't a recognised disease and now your hitting the same problems because it's symptoms aren't recognised, to some they will possibly see it as say a really bad case of GERD, horrible but not worthy of daily care, also as you say your daughter can walk, again with PIP they see it as if you can walk from a to b so you can't have mobility, do you get my drift up to now, I am not downrating your daughter's illness I'm just trying to imagine what the assessor or the DWP decision makers are maybe thinking when they are reading her report or seeing her them selves.

      I do think that they are stumped when it comes to anything that's not absolutely clear cut and a name they recognise, say like RA or maybe ME etc

      My friend has EDS obviously another fairly rare disease but she lost her mobility and out of sheer exhaustion didn't fight it, I'm sad that it comes to this but you fight for your daughter even though it's draining, I hope though that whoever does your assessment is a little more clued up

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    • Posted

      That's an awful lot to be dealing with. Does your daughter have any support workers? or a PA? Do you get respite care?

      I agree with Alexandria here and say that with PIP as you most likely already know if a claimant doesn't fit the criteria for the descriptors then they'll have a fight on their hands. Naturally PIP doesn't apply to everyone, even with care needs and i'm not saying they don't fir your daughters care needs, far from it.

      I have come to realise though that for PIP whether it's a review or a first claim then every claimant should treat a review as a first time claim. The form you'll recieve, if it's a review will be a shortened version of the PIP2 form, simple multiple choice questions of stayed the same, got better, or got worse. Don't just tick the relevant boxes, make sure you put down as much info as possible. Use extra paper if needed. Send every single piece of evidence you have, even if you've sent it the first time just send it. Add extra if needed. The more you send the better. Also send a copy of the Statement of reasons, if you've got a copy of that from the Tribunal as i'm sure this could help.

      I know being a mum you'll fight all the way, just exactly like i have done for the past 14 years. Hopefully this time you won't have to take it to Tribunal.....good luck.

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    • Posted

      Honestly i do know my stuff s like say i represent so i know whats required, ive just never done for a re claim, its always been mr or tribunal new claims..no its just me left to do it all as all medical proffessions have never seen daisys case before, nor are they likely to again, they wont train a disteict nurse up to help as they said it would be a waste of money as the nirse will never use them particular skills again and its not worth it or one patient!!!..i even have to be in recovery and do part of the care when she has had operation in the recovery room as they dont know what to do if she starts with her side effects and obviously she cant communicate when she is having chest pains...there is alot more to it and could go on for hours about this disease..but i won't..i appreciate every comment and will jist have to hope they wont put her through it a 3rd time as like i say..there is no cure and no more operations to be had so there will never be a change, this daisys life for life x

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    • Posted

      Its not a mobility illsue...never has been..i have never applied for mobility on either dla or pip..she cant travel alone as she needs help with syringes and soeaking if her chest pains start but never even filled that part in..its a care issue..if daisy isnt monitored when sleeping, she will apirate and choke amoungst lots of other things, also she has to have a certain amount of fluid a day even if she is sleeping, which obviouslty i have to do, as daisys illness, due to regurgitating 20plus times a day, causes extreme dehydration so its imperitive she has the right amoint of fluid per day and it also has to be documented in fluid charts and care plan etc...oh i could go on alot more about all the other things this horrible disease causes..i have good gp support though, a fabulous team of district nurses and dieticians and she is under a brilliant gastroteam in our local hospital...i get around 3hrs sleep per day as daisy as to be monitored at all times whilst sleeping and she sleeps over 6hrs a day on and off due to the exhaustion (its a few hrs at a time as this is exhaustion and not jist tiredness) so if has slept most of night i have been awake, but then she could be back asleep within 2hrs for another 4hrs so obviously i have to be awake so my partner has changd jobs to split shifts so i can grab abit of sleep at lunchtine whilst he monitors daisy xx..
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