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pip review coming up in June

shazier
shazier Community member Posts: 82 Pioneering
Hi everyone I'm shaz and new to the group.
Can anyone advise me, please. Is there anywhere i can get help to fill in my review form at home? I was taken over to pip three yrs ago after having dla high living and mobilty rate indefinite award.
my daughter who is my carer filled in my pip form and i had a medical assessment at home due to having severe agoraphobia for yrs. 
a little about myself, I have several medical conditions, fibromyalgia, cfs arthritis severe copd asthma  heart disease osteoporosis eating disorder and a few other conditions which are mental health conditions.
I know its not what diagnoses or conditions you have but how they affect you.
i am affected on a daily bases by most of my conditions, i suffer severe pain on a daily bases and never free of it, the pains  in  my muscles joints back and neck making it extremely difficult for me to  manage, i also live on my own. i suffer with fatigue anxiety panick attacks and other symptoms all of which affect me daily. i have help with day to things, ie dressing bathing taking nutrition medication and my health is monitored to. this is all done by my carer who is my daughter.
when moving over from dla to pip i was given the high rate enhance on both the care and mobility, and i know that doesnt mean im going to get the same result at review again next time.
  i believe it a much shorter form but, i really need some help in getting it filled in properly as my daughter, got just as stressed out as me trying to with filling the  last form out.
  i find it difficult to put into sentences and express myself. i  really dont want to put her under the same pressure that we went through before, she looks after me, her own family  then goes on to care for the elderly in the community and really doesn't have the spare time needed.
She prefers that i at least try and find help for a home vist to help fill the forms that are due in , i don't mind paying if thats what it takes.
 I still have my old evidence but not any recent evidence as i no longer go to any appoints due t the severe agoraphobia. It is very very rare for me to step outside the house, i manged to see a cardio 6 months ago, but the stres and anxiety that caused was tramendious, I have a recent letter from the gp confirming my diognoses and that i would reqire a medical assessment at home due to not being able to leave the house, and a cardio letter staing my new condition of heart disease 
my gp of many yrs that did home visits and knew me extremly well has recently re tired, my new gp doesnt know me at all and has only visited me at home due to severe chest infections my copd and asthma on 3 ocassions. On all 3 occasions she wanted to admit me to hospital but i went into an instant  panic attack and refused to go and have treatment at home so, she knows what im like when it comes to leaving the house but thats all she has personally experienced with me. when v had sever falls it takes me ages to agree to get checked out and very rare i will go to the A n  E departs. i get to anxious panick and  on many occasions got there and my daughter has had to turn round and bring me back. 
MY daughter has explained all this on my first pi form, do we repeat what has already been said? or just tick the box with no change, if we need to write and explain again i need someone to come and help me but, don't know who would come to the house and do the forms for me. any advice please and should i send in all the evidence again that iv already sent. most evidence sent already is over 5yrs old
thank you in advance for any replies. i know i have until June but im panicking and getting very stressed and anxious already.





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Comments

  • simonsable
    simonsable Community member Posts: 75 Connected
    It difficult to know what to say as I am aware that PIP is differently assessed. My advice is tick No Change, and write in the relevant box about your disabilities on your worse day. You should explain very cleanly as possible what you struggle and need help with, what sort of pain you are in and how often.

    Please try not to get stressed as I am happy to help you fill it in bit by bit

  • shazier
    shazier Community member Posts: 82 Pioneering
    thank you so much for your kindness and support. help with filling out my form and helping to put my words into a sentances would help so much with my anxiety stress and depression. i kow its silly to panick now as  i have until june but, i sit and worry about it everyday and wll continue t do so  until the time comes. thats why if ii  start  preparing it will help with the stress tremendously. i have downloaded example forms which im going to fill then  can just copy it over to the form when it arrives. again thank you so much for offering your help
  • debweb07
    debweb07 Community member Posts: 6 Listener
    If you need any help I'm happy to help I've had three years medical training so I know some of what they looking for despite mine been turned down due to not having evidence ,but that was because I'd moved from England to Wales and they are totally different on how they do things .I too get panic attacks and suffer with depression ,it's not silly and don't feel you can't ask for help even though I say it I find it hard too
  • shazier
    shazier Community member Posts: 82 Pioneering
    Thank you so much also debs the offers of help from you and reply from simon  has  made me feel a  little better already  knowing  i have some support, it makes me feel i am not alone with this, thank you so much i really appreciate the offer. im sorry to hear you were turned down, I really hope you get it back soon, my evidance is old but its all iv got, iv sent of for more evidence from my specialist and physio and notes they wrote on my visits but, if it will help with being so old i dont know, most of my evidance is going back to 2010, and does back up what i suffer with but, they dont know how it affects me on a daily bases  now. my GP that  retired   knew me very well but, new gp  knows nothing much about me apart from my copd asthma and angina.I have found a print out of a letter that says dear gp and askes them to fill it out, all i can do i thnk is, get my carer who is my daughter to put a supporting letter in with it giving details of the help she gives and why i need it. other than that, i haven't got new evidence. i was discharged from all the specialist due to not attending appoints due to the agoraphobia. specialist for my mental health i got my cpn to discharge me when he left as i coudnt face seeing someone new. getting back into the sytem now to see a specialist is very diificult at my end of the country, you have to oeither of taken an overdose or go to the AnE if you feel your going to take an overdose, its madness that you have t get to that point before you can get them to refer you. a big problem for me to is being able to see a female and not a male,, although i find it very difficult stressful and panic at seeing anyone i don't  know and tell them how i feel, im a little less panicky with a female. depends on how im feeling to. on a really bad days  i dont even let family visit,,
     i can isolate myself for weeks and even reluctant having my daughter who caes for me around, i know shes gong to nag me to get dressed eat etc when i just need to be alone, i cant even answer the phone if its an unexpected call, my answer machine is always on, if i dont know who it is that calling i feeze and panick. its dreadful
    . I used to work in a hospital and was alo a trained hairdresser, i used to love socializing and meet different people. i am so completely different, im not the same person that i used to be.at the moment i feel that desperate and anxious over this pip review that iim crying out for help. normally
     i dont have much interest in the internet either. my days are spent either sitting on my patio watching the horses at the back of my house who belong to a friend  when the wether is warm or, just sit watching the cracks in the ceiling. I cant concentrate on watching films and cant sit long enough anyway, im up and down like a yo yo somedays just to change positions trying to ease the pain. thi is the longest i have chatted to anyone in months and, taken me a few hrs to type all this out, but i must add, it has helped to get out how im feeling. thank you for listening and i hoe i havent bored you to much l



  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
    Hi @shazier, just wanted to say hello and thank you for sharing the above. It's great to have you as part of our community, and do let us know if you need any assistance with your forms. 

    On another note, some of our community members have been playing a word association game that you may like to join in with- it's a way of getting talking to people without having to concentrate for long periods of time!
  • shazier
    shazier Community member Posts: 82 Pioneering
    Hi, thank you and its lovely to meet you all. Its really good knowing that i have somewhere to turn to and not sit here stressing on my own. I find it very difficult expressing my feelings and chatting to people normally  and very rarely use my pc anymore due to lack of motivation, anxiety ect   but, desperation has brought me to the pc looking for help and answers ,not something i  can normally do anymore.
      normally I would sit and  worry  yself sick and stress out on my own , but hoping, trying to chat with others in the same or simular situations will help me to through it, and hopefully i will be able to help others to when my mind allows me to,   it takes me a long time to type things out, not easy  typing with hand grips on and feel like im wearing boxing gloves because me hands are really painful and feel like im wearing boxing gloves at the moment, its taken me several attempts todays to type this out for several reasons and started thi morning but, im at the end and feel proud that i have ben able to answer your kind  mesage. thank you again.
  • CockneyRebel
    CockneyRebel Community member Posts: 5,209 Disability Gamechanger
    Hi shazier and welcome

    Getting letters of supprt from friends and family, the people that see you struggle is a good idea. Try to get them a little more formal as a testamonial

    So their letters must include their name and address, they need to explain their relation to the claimant and how often they see them.

    Then they need to explain anything they see the claimant do or not do in regard to the relevant benefits activities and any other comments that they have.

    Lastly they need to attest that the information that they have provided is correct to the best of their ability.

    CR 
    Be all you can be, make  every day count. Namaste
  • shazier
    shazier Community member Posts: 82 Pioneering
    Hi and thank you for your advice. 
    I see my daughter daily as she is my main carer, she did write detailed information on my first pip claim and went into great detail. I have spoken to to  her about writing out another letter as she says, the letter is going to be almost the same as noting has changed apart from, i now have ischemic heart disease. I havent reported a change in circumstances as though  i would add this to the review form
    . my needs are still the same even with the new diagnoses and I aim really worried out, we will have to get help next timim because my gp has retired and she knew me very well and was very supportive,
     she had known me for many yrs and saw the decline in my health over the yrs.. new gp i have now  knows very little about me and only really see me on a home visit when i have a severe chest infection or my copd or asthma is bad.. I did, however, i  managed to keep the appointment to see the cardio and have m y heart scan but, i havent manage to go for my follow up appointment, i did try but my daughter had to bring me back home i totally lost it and panicked, no way could i go into the waiting room. I stressed and was extremely anxious for days before that appointment, i couldnt even think straight. I cant give the dwp any more evidance than the evidance they already have which we sent 3 yrs ago,
    I have sent for all my medical records from the hospital but all my notes are 6 and 10 yrs old, i cant give them what i havent got but i am worrying myself sick about this ans alo filling the forms in, im usless at explainging things and writing it down, my daughter works to and its not easy for her either, when she completed my first form she said, im never filling another one of those, we will have to find help to get them filled in for me? i cant even go down the local Cab because i have agrophobia. im getting extremly  anxious and stressed just chatting about it.
  • CockneyRebel
    CockneyRebel Community member Posts: 5,209 Disability Gamechanger
    Hi shazier

    Please don't stress, we are here to help, only chat when you want.
    I sent no evidence at all with my PIP application,

    Try keeping a diary for a week or month.This will give you the best evidence you can have, PIP is concerned with "HOW " you are affected, medical evidence can only help with the "WHY"

    Anecdotal evidence in the form of testimonials should also add as much weight to your claim as medical evidence.

    Why is a testamonial different to a letter ?

    So their letters must include their name and address, they need to explain their relation to the claimant and how often they see them.

    Then they need to explain anything they see the claimant do or not do in regard to the relevant benefits activities and any other comments that they have.

    Lastly they need to attest that the information that they have provided is correct to the best of their ability.

    CR
    Be all you can be, make  every day count. Namaste
  • shazier
    shazier Community member Posts: 82 Pioneering
    thank you so much for the advice. If you dot mind me asking did they not ask you for medical evidence or gp letter and was this your first claim or review?
    My daughter wrote me a very lengthy testimonial, it was like a book, she wrote everything down that she could think of and explained why i struggled with the activity, it took her ages, she wrote a full account on each activity,  she struggled with putting words into a sentence.
    she did say after the last form that next time we would have to get help 

  • CockneyRebel
    CockneyRebel Community member Posts: 5,209 Disability Gamechanger
    hi shazier

    My claim was a change from DLA, but I have helped with 3 reviews so far. The DWP or HCP seldom ask for medical evidence. If your GP is willing to help that is good but not essential. If you can get trained help from CAB or similar, with filling in the you should do so

    CR
    Be all you can be, make  every day count. Namaste
  • shazier
    shazier Community member Posts: 82 Pioneering
    Thank you so much CR I would prefer to get help with my forms on here, not only do i feel more comfortable but also dont have to leave the house which is a major issue for me. I don't like putting on anyone but any help will be very much appreciated and i would be grateful to you and a couple of others that have offered there help. can i just ask also, I want to start  very soon and im going to fill in the samle form so that im ready for when the form arrives and lesson this nxiety that its causing, my mind will be out at ease if i get started no, maybe just go though a couple of quetions a day and help to put into word what im trying to get ver, i am absolutely useless when i t comes to writing things down, it all comes out wrong and my handwritting is terrible, somedays i cant even hold a pen never mind write things down, it will be much better for me to type on a seperate piece of paper and staple it to the form, it might take me ages to type but at least the will understand my sentances:) so im going to type it out..on  speaking to my daughter earlier, she asked if my last assessment for pip which was the long form and the medical assesment form from atos that i havea copy of would  be evidence.?
    I have also found this today and think many would be intersted in watching it. It may of already e seen but thought i would share but didnt know where to share it
    https://www.youtube.com/watch?v=OpP12AhIXWE
  • shazier
    shazier Community member Posts: 82 Pioneering
    Hi mikehughesq. thank you for your reply. I do have a copy of my form and my daughter did suggest that we did that but i wasn't sure if it was such a good idea, even though things are just the same apart from i now have angina attacks. Im afraid to tell them about that, to be honest after reading about, people being turned down at there the second review, how can they say your entitled to it in one review and not the second when nothing has changed? im shocked at what i have read. I thought this second form was just a tick box, i thought this was just to clarify that you still need the pip and meet the critieria, so why have a form with a tik the box and still have to go int as much detail when they have your orignal copy. Don't make sence to me and sending people on  face to face when nothing has change is costing them more money. If your ticking you have got better since the lst assesment i can understand them wanting you to go into detail and also if your condition has deteriated, but when nothing has change, iwhy send a tick box form out in the first plaace? I though this was so it was less stressful to the claimant to, obviously not. I dont go on the internet like i use to so have pretty much lost contact with what is going on in the outside world. im horrified at the way they are treating geniune disable people. Anyway i have got side tracked at what i was replying to. I have a coy of my original form and the atos assessment report. my daughter was just wondering if we could use this as evidance to show that i was entitled last time and with nothing changing it should be the same out come. 
  • shazier
    shazier Community member Posts: 82 Pioneering
    Thank you mikehughscq.
     my daughter has said the same. i suffer badly with my anxiety anyway, so where we need to declare this is on the engaing  with others or/ and going out 
     the agoraphobia and stress together when i had to go to the hospital to see the cardio and have a heart scan was very distressing. I had already missed two appoints because of the stress and anxiety and going out and having to see a stranger....the first appointment was just cancelled, no way could i bring myself to go.  , second appoint my daughter did talk me round eventually but what a nightmare that turned out to be,
    i managed to get to the out patients department i was so stressed and anxious then panick struck me, as i re call it, i was boiling hot, i started being sick, my heart was racing and i thought i was having a heart attack, to make things worse people were surrounding me askiing if i was ok, my daughter starting panicking to as she had never seen me panick this bad before. great help she was. next i remember being sat in a room with my daughter and a doctor.   I didnt make the appoint to see the cardiio or have my echocardiogram. my daughter brought me straight home, it affected me for days,this was the worst panick attack i had ever had, no way was i going back there ever again...Anyway It was only my family nagging and pushing me.that much that i agreed for my daughter to re book the appoint if they let me sit in a room rather then sitting  in the waiting area.,. the third appoint i wasnt  told about until the day before i was going. I could of dropped through the floor, i i couldnt believe she would  do this to me again,  she did this  to me when i had to have a face to face for my home medical re view with atos three yrs ago. 
    I knew she was sparing me from stressing and worrying for days or weeks before appointment but its like a brick being thrown at you in the chest.
    anyway to cut a longer story short,  the day of the appoint they let us sit in a room on our own and wait until it was my turn, I had an ecg my heart scan and then saw the cardio. I didnt have the results from the heart scan that day but had the ecg results
    Prior to that my  gp had suspected that i may have angine and gave me treated for it.
    it was comfirmed by the cardio.
    so not sure really where i would put the change, would this be  going out or enging with others or both?
  • shazier
    shazier Community member Posts: 82 Pioneering
    thanks again mikehugescq. so would u write this down for going out, and on the engaging with people activity say refer to the information on going out?
  • Deb57
    Deb57 Community member Posts: 9 Listener
    Hi, I would also have  a look  at the Benefits and work website, there are lots of guides on there. Just write everything on your  very worst day. As you have described on here. You  and  your  daughter are both entitled to have  a care needs  assessment  done by  Social services. You can request  a home assessment for PIP. Have you also claimed  ESA. And the best advice I would give is to record your assessment!! So, many lies are told on their reports!  A cassette recorder can be bought  from Argos for £25. You must have 2. so you can  have 1 tape each afterwards. 
  • shazier
    shazier Community member Posts: 82 Pioneering
    Hi deb 57. thank you for your imput. I am on esa support group and also had social services do an assessment about 4 yrs ago and then another at the beg of last yr. it was them that arranged to have my bathroom and toilet knocked into one with there being such limited space, im still waiting on that to be done. they have provided an electric bath chair and electric bed, grab rails which i cant always use but, there when i can, they tried for a stair lift but my stairs are to narrow, the perch stool that i could have that would fit they wont allow it because i have dizzy spell so deemed as unsafe. i have frame around my toilet, they were very helpful. i did have a care package put into place but, but we cancelled after a few months, i had to contribute £98 a wk and they put the rest but, i just coulldnt afford it, i didnt know my pip was means tested. by the time i had paid my daughter i could afford to have help with the cleaning, having my garden maintained and keep the insurance up on the car or petrol cost  that i pay for my daughter to get to me each day.my gas bills are high with having to stay as warm as i can, my electric bills are higher because i never leave the house and also other household bills and personal stuff that i need each week. yes they were very good and they helped me allot. on my last assessment, i did record my home visit but, this was done on my phone in secret, i had a paramedic and she wa lovely, although she didnt put everything down that was mentioned, she pretty much covered enough to get me the enhanced rate. she did miss out a few answers though. i will take your advice on the recorders.I think this is a fab idea especially after some of the things i have read, its pretty scary. both me and my daughter are not brill at explaining things on paper but have been told tat we can, copy from my first form as long as it still applies, nothing as changed re the help i get so, im going to get my daughter to sit with me and go through the form that we copied, i also have a copy of the paramedics report, i was wondering if i could use her report towards evidance.
  • shazier
    shazier Community member Posts: 82 Pioneering
    I have just looked up the cassette players where do you get the cassettes from? ad i wonder if you can buy a double cassette player still
  • Deb57
    Deb57 Community member Posts: 9 Listener
    Thank you for  the clarification on that  Mike....  You may be able to get a double one, second hand. But, you may run the risk of it not working on the day.  Blank, new, tapes you can get from Ebay. Oh and  you must tell them, in writing before hand that you will be recording it.
  • shazier
    shazier Community member Posts: 82 Pioneering
    I fillled my form in as honestly as i could, i have two types of arthritis osteo and fibro that cause  me pain, im not affected by all of them all at once every day 24/7 mornings and early evening are the worst time for me although, i always have some degree of pain throughout the day. colder days are worse than warmer days to thats why i always have my heating on, i always have oor grip strengh and worse in my left from being eletricuted some yrs ago, i was told that i would never be able to use my fingers again and they wanted to amutate three of them, for cosmetic reasons i want to see how i manage, doctors advise that i would be in that much pain with them i would be begging them to remove them, they we so wrong, after months of physio, i got some of my grip back not great but enough to get by and the pain eased. sorry ive gone of the subject, im terrible for doing that

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