Hello... Would welcome advice ,tips for navigating the PIP Krypton Factor — Scope | Disability forum
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Hello... Would welcome advice ,tips for navigating the PIP Krypton Factor

Sillymoo007
Sillymoo007 Community member Posts: 33 Connected
edited October 2021 in PIP, DLA, and AA
Hi all. Life is hectic. Mum of 5 .
My now 16 year old has ASD, DCD, depression, anxiety and an ongoing complicated pilonidal sinus. 
Have to move him from DLA to PIP. Yay. More stress ?.
Thought I'd stop lurking,sign up and chat.?
Would welcome advice ,tips for navigating the PIP Krypton Factor.
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Comments

  • chiarieds
    chiarieds Community member Posts: 16,007 Disability Gamechanger
    edited October 2021
    Hi @Sillymoo007 - & welcome to the community. I can well imagine life is indeed hectic with 5 children! As far as PIP goes, we will all try & help you along the way. :) The first thing to remember is that PIP is not about any diagnoses, but how your son's disability affects certain activities of daily living &/mobility......tho if you've been lurking, you might already know this.
    Next, have a look at the activities/descriptors that are looked at with PIP: https://www.cambridgeshire.gov.uk/asset-library/Personal-Independence-Payment-Descriptors-and-Scores-April-2021.pdf
    Then, give a couple of detailed examples as to the difficulty your son faces for each applicable descriptor; what exactly happens, when did it happen, did anyone witness this, & were there any consequences, i.e. how did it leave your son feeling after attempting/doing an activity?
    Can he do an activity safely, to an acceptable standard, repeat it as often as one would reasonably expect, or does it take him much longer than someone without his disability? See this mentioned at the end of the first link above.
    Lastly, do please come back with any questions.

  • Sillymoo007
    Sillymoo007 Community member Posts: 33 Connected
    Wow. Thankyou so much. I had a quick nosey at the mental health link and it's laid out,in easier to understand language. 
  • chiarieds
    chiarieds Community member Posts: 16,007 Disability Gamechanger
    Yes, I edited my post to add the mental health link, which I'd nearly forgotten. Do also try keeping a diary for a week or so; it's easy to forget how much support, & or prompting, your son might need, as you're so used to providing this.
    Just try & complete a few questions at a time, & you can always add extra pages at the end. Just ensure you put your son's name & National Insurance number on each page. You can also ring the PIP enquiry line on 0800 121 4433 to ask for extra time to complete the form, & you will be given another 2 weeks without question. Do however remember that there can be postal delays, so try & post his claim form in good time. Keep a copy of everything 'just in case,' & get a free Certificate of Posting from your Post Office when sending the form off.
  • Sillymoo007
    Sillymoo007 Community member Posts: 33 Connected
    I have a telephone appointment on Tuesday morning with a local welfare rights place. I tackled the DLA for him myself and he got HRC LRM award. I'm not so confident this time.i know I know him best but I feel I need help. Thankyou for the quick ,insightful responses. Why didn't I join sooner! ?
  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
    Hello @Sillymoo007

    Welcome to the community, good to see you joined us after a bit of lurking :) 

    It seems as though you have a lot on at the moment, and I hope the replies above from other members have been helpful. Do you and your son receive all the support you need to manage his conditions?
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  • Sillymoo007
    Sillymoo007 Community member Posts: 33 Connected
    edited October 2021
    Morning @Ross_Scope
    Very recently,my son lost both his mental health practitioner and psychologist at Autism services. The trust has no plans to replace. Funding issues apparently.He has started to see his psychiatrist more as he recently had a suicide attempt. He also has daily wound care visits from children's community nurses. But that's about it. 
    We do our best,but our son lives in a constant state of panic/low mood etc. It's not easy.
  • Sillymoo007
    Sillymoo007 Community member Posts: 33 Connected
    Also I apologise in advance. I'm still trying to navigate my way around this site and I'm not sure if I'm tagging people correctly. ?
  • Sillymoo007
    Sillymoo007 Community member Posts: 33 Connected
    Thankyou @Username_removed I wear certainly bare that in mind. 
  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
    Hello @Sillymoo007

    Thank you for your response, I'm sorry to hear that your son recently had some support removed, and it's concerning to read about the suicide attempt. 

    Please ensure you call 999 if you ever feel as though your son is a risk to himself, and if he ever wants to access immediate support and advice, the below resources may be useful:
    • Samaritans, who you can contact on 116 123
    • The Shout text service, which he could access by texting "Shout" to 85258.
    • This page on the Mind website, which covers a range of coping techniques.
    • The National Autistic Society (NAS) who offer a free helpline
    I have sent you an email from community@scope.org.uk to see if we can offer you any further help at all.
    Online Community Coordinator

    Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Did you receive a helpful reply to your discussion? Fill out our feedback form and let us know about it.
  • Sillymoo007
    Sillymoo007 Community member Posts: 33 Connected
    @Username_removed thankyou for the links. I've spent a few hours reading the pipinfo.
  • dittydora
    dittydora Community member Posts: 13 Listener
    Im so glad i found this forum the advice is so spot on an helpfull and its nice to be heard understood feel less alone trying to navigate this pip form ? as crps is so not black and white but the questions are!!
  • dittydora
    dittydora Community member Posts: 13 Listener
    I hear youv? thankyou
  • dittydora
    dittydora Community member Posts: 13 Listener
    You lol i blame my crps
  • dittydora
    dittydora Community member Posts: 13 Listener
    Anyway update ive now answered 2 questions with this online pip form 2 days that took only 13 more to go ?

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