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We have nobody who knows the person best

parksyparksy Member Posts: 19 Listener
Hi any advice please, my daughter has a chronic lung condition and aspergers and her pip review papers came in last tuesday. I only have until the 28th to have the forms back so with Xmas that has left me more or less a week to get everything. A little unreasonable i think but the main problem i have is that I have years of medical evidence but as my daughter has just gone through the transition from child to adult care, there is nobody who knows her best, she has seen her new consultant at the Brompton once, he said we will carry on her treatments, he needs to request her full medical history and won t be seeing her for six months while they wait for this then there is her respiratory nurse who I have only spoken to on the phone this afternoon, her old nurse stopped seeing her last month. Her gp have never had much to do with her care except to make repeat prescriptions, what do I do, I have to put down somebody who knows her best also her respiratory nurse did this last time and no f2f was required, I have printed off copies of various medical evidence from now back to when she was tiny bit i really don't know what to do

Replies

  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Hi,

    Do exactly the same as you did the first time you filled out the forms. Even though it's a review you should treat it as a new claim and put down as much information as possible about how she's affected by her conditions. You should put 2-3 examples of what happened the last time she did that activity for each descriptor that applies. Don't just put "no change" and leave it at that.

    You can ask for an extension of time to return the form but make sure you allow for the Xmas post and closing days with DWP when you return it. If it's not received then her PIP will stop.

    I recently filled out my daughters PIP review forms. She has autism, learning disability and social anxiety disorder. She also never sees her GP and the medication she takes come from her Consultant not her GP because she's under the age of 18. She attends college 4 days a week so i just added the name of her disability advisor at her college. This was the same person they contacted when i first applied for PIP for her. I would just put down the person that she sees the most. They very rarely contact them anyway.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • parksyparksy Member Posts: 19 Listener
    Yes I have filled in loads of information and photocopied probably 100 lettersletters, they did phone holly nurse last time but obviously she no longer cares for holly, I thought about emailing and asking her as she saw her until last month but I don't know if she can legally. I am going to tell them that obviously this is a really bad time as she is transitioning and now no longer sees her people that know her best
  • debsidoodebsidoo Member Posts: 327 Pioneering
    Hi @parksy
    if I was in your situation I would add a covering letter in the section for any other information explaining she has just transitioned to adulthood but tell them you give them permission to contact any healthcare workers she has been seeing up till then.Although they are no longer her care team they still have professional knowledge about her needs which will be evidence towards her claim particularly if they have seen her in the last few months.Anyone who has knowledge about her daily needs can give evidence to back up the claim they do not need to be medical professionals.Therefore the input her old nurse can give will still be valid.
    Good luck Debsidoo.x
  • parksyparksy Member Posts: 19 Listener
    So if this bloody form has to be in by 28th then realistically I have to have them sent by Friday at the latest, I am never going to get anything by then
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    You'll need to post it before Friday if it has to be returned by that date. Don't forget the Christmas closing days for DWP and there won't be any post Tues/wed of next week. Ring tomorrow to for an extension of time to return the forms.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • parksyparksy Member Posts: 19 Listener
    I think I will have to at least try, does anyone know how long an extension i can ask for, I shouldn't need much, but then you have all the new year closures as well
  • debsidoodebsidoo Member Posts: 327 Pioneering
    Hi @parksy A friend of mine was granted 14 days extension but you could ask for longer what with it being holidays and difficult to contact people.I don’t know if you’ll get longer but it can’t hurt to ask. Debsidoo.x
  • Firefly123Firefly123 Member Posts: 525 Pioneering
    You can get two weeks and then ask for longer if needed better to call that the form being late 
  • AlwaysoneAlwaysone Member Posts: 15 Connected
    parksy said:
    So if this bloody form has to be in by 28th then realistically I have to have them sent by Friday at the latest, I am never going to get anything by then

  • PhantomscriptPhantomscript Member Posts: 10 Listener
    Hello Parksy,
    Fill in the forms as usual, and do a a general write up enclosing and referring to her medical history as requisite. In doing this keep with the Descriptors as they apply.
  • crackercracker Member Posts: 324 Pioneering
    I am sorry you are under this pressure. Six months? And they refuse treatment because of her transition to adult? How unfair, refusing to treat because of a technicality.

    But it happens a ll the time here, too, usually because of money (payment to medical facilities or professionals from the government).  We are at the mercy of impenetrable walls of rules and regulations, often cruel.

    I do hope you get your extension.
  • mikehughescqmikehughescq Member Posts: 6,623 Disability Gamechanger
    PIP will give a 2 week extension no questions asked but it’s an administrative rather than legal deadline so you can ask for as long as you think you will need.
  • parksyparksy Member Posts: 19 Listener
    They haven't refused treatment as such, the proff we saw was thrown in at the deep end a bit, he was only sent a 5 line letter asking him to be able to prescribe her medicine as there is only allowed a London doctor to prescribe it, he said he would contact the nurse and get her to make an appointment to do it, it's the bloody nurses in London who are saying they can't give it to her without her going in for a day to have loads of tests and see another doctor on the day, we only saw the professor two weeks ago and he agreed to carry on her treatments until he has all her medical records, it's a four hour journey there, not fun, so what she goes without vital medication until it suits the nurses to give it to her. On top of that I had a cold last week, now it's gone to a chest infection and sinusitis, my face hurts and I am feeling very sorry for myself
  • mikehughescqmikehughescq Member Posts: 6,623 Disability Gamechanger
    All this is medical evidence. It’s all about diagnosis, prognosis etc. For disability benefits you need to focus on examples of an inability to do the points scoring activities on the date of claim. That’s your best evidence by far. 
  • TardisTardis Member Posts: 214 Pioneering
    I would call and get the two week extension.  That is given on asking.  Even if you think you will manage to post the form on time, having that 2 week buffer will give you peace of mind with the way the post is over Xmas.
  • parksyparksy Member Posts: 19 Listener
    I have just checked the date it was sent, I received it on 11 of December i think, it was sent on 28 november!, I usually send them recorded delivery but at that mail rate i wouldn't get it until new year anyway
  • mikehughescqmikehughescq Member Posts: 6,623 Disability Gamechanger
    Waste of time doing recorded delivery. It’s being delivered to a mail delivery centre and whoever signs for it won’t be from DWP and at the point of signing you have no guarantee it will be scanned; uploaded and linked to your file. Best insurance is to simply keep a good copy.
  • parksyparksy Member Posts: 19 Listener
    Really, what the hell, mind you with recorded delivery of they say I hadn't sent them i can prove i did and then at least they might not stop it all and ask for new claim. I installed them anyway and they have given me until the 11th January 
  • parksyparksy Member Posts: 19 Listener
    I really did think the person who knows them best had to be professional, I know with dla it could be anybody as it stated that but with the pip forms it just lists examples of professional that can be used, I have tried emailing her old nurse but she hasn't responded. It's rediculous, the person who knows her best is her main carer which is me, I am also her appointee, you would think that with what I tell them and with letter evidence that would be enough, my son in laws parents are a nurse and care home manager so quite respectable people and he offered last night to get one of them to do it for me but I don't know if it will help
  • mikehughescqmikehughescq Member Posts: 6,623 Disability Gamechanger
    The whole “person who knows them best” is rarely central to the decision. Most people who do complete it end up doing something not focused on points scoring at all and often undermine the strength of the case. As an adviser I can’t recall the last time I had someone fill something in. It’s peripheral. It’s far more important to have 2 or 3 examples in every “anything else you’d like to tell us” box you think applies.
  • parksyparksy Member Posts: 19 Listener
    The form we have been sent is the 1043mikehughescq said:
    The whole “person who knows them best” is rarely central to the decision. Most people who do complete it end up doing something not focused on points scoring at all and often undermine the strength of the case. As an adviser I can’t recall the last time I had someone fill something in. It’s peripheral. It’s far more important to have 2 or 3 examples in every “anything else you’d like to tell us” box you think applies.
    Sorry can you elaborate a little more, when daughters nurse was her person who knows her best the last time they did actually call her
  • mikehughescqmikehughescq Member Posts: 6,623 Disability Gamechanger
    Elaborate on what? What do you need to know?
  • parksyparksy Member Posts: 19 Listener
    edited December 2018
    Usually i just write a 5 or 6 page letter stating all my daughters problems etc, you said just focus on the descriptors, which would explain things like she got no points for taking medication and treatment last time but she cannot tell the time she wouldn't even think to do them herself and when I give them to her i have to hold her hand while she does them, so I have to pretty much just focus on the descriptors. So write the letter as doing examples of each descriptor one at a time, for example why she needs help with medecines examples, then why she can't talk to people then examples, not just write a letter to better describe that person. I hope this makes sense
  • parksyparksy Member Posts: 19 Listener
  • mikehughescqmikehughescq Member Posts: 6,623 Disability Gamechanger
    Yes, decide which specific points she ought to score; explain why in detail. Give 2 or 3 examples per points scoring activity to show why she can’t do it reliably i.e. can’t do it at all; only with an aid/appliance; only with help from another person and either not safely, repeatedly, to a reasonable standard or in a reasonable time. 

    A letter will usually not focus on these exact things unless you’re a hugely disciplined letter writer.
  • parksyparksy Member Posts: 19 Listener
    Okay so you say decide what she should get for points and provide evidence, would you actually advise writing ,I think she should get x amount of points because, or is it best leaving my opinion of points out of it. Sorry I am new to this pip and it is very stressful. I have already filled the form in and usually use the letter for more in depth information. Any advice on what to do about the person who knows her best as the current situation is difficuilt, will telling them that she has transitioned to adult care in only the last month so doesn't have anyone cut it or should I try to find someone who would be willing to do this for me?
  • mikehughescqmikehughescq Member Posts: 6,623 Disability Gamechanger
    Write it. Your opinion is what the case is. 

    I’m not sure why you think you need a “person who needs her best”. I’ve already dealt with it. It’s icing on the cake rather than the key
  • parksyparksy Member Posts: 19 Listener
    The second page on the form says you have to fill in the medical person who knows her best. But it's ok, I have just had an email from her former respiratory nurse who agreed that it makes sense for her to do it and is happy for me to put her name down, a massive relief
  • YadnadYadnad Posts: 2,856 Member
    Thankfully you now have it sorted.
    There is some argument that you really should not abide by all what the DWP say or write. You have to be satisfied that the request has some legal backing.

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