PIP, DLA and AA
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Help with DLA to PIP

Tonypiano777Tonypiano777 Member Posts: 37 Connected
edited March 2019 in PIP, DLA and AA
Hello everyone. This is my first post here, and it may take time for me to get used to the  “forum layout”  🙂 hope I’ve posted in the right place! 

I am due to come off DLA (All lower rate) now, and on to PIP -  and I’m  pretty het up about it. 🙈

I’m Not sure if I can post my experiences here (or in another section)  🤷‍♂️ , but I’m an ex-Carer, 58 years old, and now living alone,  who needs help with this Personal independence payment  (I’m currently on ESA [contribution-based/support group] ) too  

Thank you.

TonyPiano777🙃

Replies

  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    Hi @Tonypiano777
    Welcome to the community, you have posted in the right place and you can post your experiences here in this post.

    Changing from DLA to PIP can be really stressful, lots of people really struggle with this. I have asked our @BenefitsTrainingCo
    to come and answer your questions so hopefully they will be along soon.

    There are lots of members here who have been through the same thing though, so do ask questions and get chatting. There are no silly questions here!! We all understand just how confusing and distressing the benefits system can be!
    Scope
    Senior online community officer
  • Tonypiano777Tonypiano777 Member Posts: 37 Connected
    edited March 2019
    Thank you Sam 👍

    RE: PIP.  I received my letter to say “my DLA is ending”  (last Thursday), and I am yet to make a phone call to request a PIP form, as need to take this in stages, as I haven’t  got a lot of information to go on, meaning carers/care professionals, psychiatrists/therapist  (this alone is creating anxiety)   All i have is my GP.

    My GP is ringing me today 5-7 pm (telephone appointment) as I’m unable to get out of the house through ongoing-agoraphobia/claustrophobia/Chronic anxiety (which was on my doctors last letter 2012 - but this was for  Claimmg  ESA). So i need to get a supporting letter (I think) from my doctor before i ring the DWP, at least thats what I’m going to do (as probably wont receive the letter till next week). 

    Its assuring to know you aren’t alone with  mental issues, (and yes, it does sometimes seem your the only one in th world...) 

    its an extremely long story (as a former carer for my brother (11 years) and my mother (5 Years ) severely mentally handicapped (brother) and Alzheimer’s (mother but wont burden you with that, however it’s taken its toll. I filled in A PIP form  for for my brother 18 months ago, but he was in a nursing home anyway, At this time, but even this was very difficult - with all the care professionals/therapist etc to fall upon. I collapsed and was taken to A&E. 

    Thanks for your reply.  

    TonyPiano777



  • BenefitsTrainingCoBenefitsTrainingCo Member Posts: 2,692 Pioneering
    Hi @Tonypiano777 If you are being moved from DLA to PIP you should claim PIP within the timescale PIP says in their letter, that way, while your PIP is being decided and processed you can continue to receive your DLA payments.  When you call PIP they will take some initial basic information and issue you with a PIP2 questionnaire.  This gives you a month to return (the date for return will be on the form)  If you feel you need more time to complete the form you can call PIP and ask for a 2 week extension.  You can get help from a local advice centre with the form: contact your local council, look for a Citizens Advice or search here for an independent advice centre near to you: http://www.adviceuk.org.uk/looking-for-advice/find-advice/
    You should not delay claiming PIP simply due to waiting for medical evidence or information, this can be sent in either with the PIP2 form or later still.  If you see an adviser about the form, they should also be able to guide you on getting more evidence.  I hope that helps
    As an aside, if you are on contribution based ESA  and are in the Support Group, if you are single and have no other income (other than DLA) and have no savings over £16,000 you should also be on income related ESA - you should contact ESA and ask to be sent an ESA3 form.  Do not let them tell you that you should claim UC - this is not correct. If you need more advice, the local advice centre can help or of course I am sure you can post again on here if you wish.
    Sarah
    The Benefits Training Co:
    Paul Bradley
    Michael Chambers
    Will Hadwen
    Sarah Hayle
    Maria Solomon
    David Stickland
  • Tonypiano777Tonypiano777 Member Posts: 37 Connected
    edited March 2019
    Hello Sarah (BenefitsTrainingCo )

    Thanks for your reply. 

    My “deadline” to call for the PIP form is March 22nd, but ill Call  ASAP.  Thanks for the heads up on info required when calling (though I’ve been through this process before whilst claiming my disabled brothers PIP, but was over <1.5 years> ago. 
    I’ve got a Doctors’s letter coming in about a week, with just a bit more info needed from me before he types one out, as my condition as changed since the last letter. (For example, i now have claustrophobia AS WELL as agoraphobia) but I’m rest assured it’ll go back with the form on time 

    Ive had a letter re Income related ESA - but have over £16,000 (or combined at least) so i rang them about this, and they sent me a letter of confirmation but told me i can always apply should i need to (in the future )

    Thank you for the Citizens Advice Bureau link. 

    Edit: had to type this out twice, as hit the refresh button, not knowing it deletes all your text 🙈

    Tony. 


  • Tonypiano777Tonypiano777 Member Posts: 37 Connected
    edited March 2019
    Please help me. I’m totally stuck. 

    Ive received a second letter today (two weeks after the first letter to move from dla to pip) but my brains just locked up.(i have very bad memory problems, and need to read a paragraph MANY times to understand, let alone the large documents.   I dont know what to do. I am supposed to ring up, and give details etc which I’m ok with but stuck on the question i will get asked for “supporting evidence” as i have my doctor (only) who’s updating me with a letter next week. will I get asked these quastions of supporting carer workers/social workers etc? As i have none I’m afraid, but  only my audiologists (i am an hearing aid wearer and very hard of hearing, even on the phone, and takes me several listens to take in information, as cant remember sentences etc unless repeated).  

    Its making me more anxious than ever, and not slept more than 2-3 hours per night this past fortnight (my sleeps bad as it is) I’m too mentally  tired at the moment (2.20 pm) to converse on the phone confused 🤷‍♂️  And with my brothers pip form which is ongoing (and came this week is making things worse, though its more straight forwards as he’s in a nursing home now ) 

    Edit: could i get a  social worker to help me? But times running out (got till 22nd march to claim, and DLA tempory being stopped till 19th April.(if i dont claim this time that is)  Should i just ring anyway as dont want it to affect my claim.

    Tony (sorry on mobile device so forgive spelling etc) sorry for bothering as other people on thes forums also have needs Ive read. 

    Is there anyone i can speak to from tcommunity scope today? 

    Tony. 

  • Tonypiano777Tonypiano777 Member Posts: 37 Connected
    edited March 2019
    Double post sorry 
  • yanniyanni Member Posts: 42 Courageous
    edited March 2019

    Hi Tony

     I have hearing difficulties as well and I found out that you can apply for a claim form (PIP2) by post  

    Claim by post

    You can get a form to send information by post (although this can delay the decision on your claim). Write a letter to ask for the form.

    Personal Independence Payment New Claims
    Post Handling Site B
    Wolverhampton
    WV99 1AH

    (From https://www.gov.uk/pip/how-to-claim)

    I just wrote:

     ‘Please take this letter as confirmation that I want to apply for PIP. Please send me the necessary forms to do so’ 

    I provided my name, address and NI no and sent it to the above address.

    I would recommend sending it by recorded delivery so you have proof it was sent.

    You might also want to look at the NGT text relay service https://www.ngts.org.uk/ if you need to phone the DWP (or anyone else) at some point. A relay assistant will type what the other person is saying and then you can either speak or type your response. I use this when I contact the DWP as I struggle to follow what people are saying on the phone.
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger

    Hello @Tonypiano777 Pleased to meet you. Sorry what you are going through.

    I know you are experiencing lots of issues and problems.

    This is difficult for you and to deal with it on your own is never easy.

    I have mental health issues as well. Sometimes finding the support you need to cope right now.  Could be useful to look at.

    I used this charity if this helps you. You were talking about a social worker.

    https://www.richmondfellowship.org.uk.

    They offer support and help with your mental health plus access to floating support or an out reach worker.

    Also help with benefits, welfare and anything else.

    Something to consider.

    Hope that helps.

    I am one of the team of community champions who guide, advise and help members.

    Please if I can help with anything further. Wish for a chat . Ready to listen and be supportive.

    I have been through the assessments many times and it is never easy to deal with.

    Please keep in touch.

    Take care.

    @thespiceman

    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • Tonypiano777Tonypiano777 Member Posts: 37 Connected
    Thank the thespiceman and yanni. Lots of good info there to take on board. Will check the links later on thanks you.  The NGT is new to me Yanni, so will explore that more.  

    I will look at the charity link you provided thespiceman and appreciate the help you’ve given me.  

    TonyPiano777
  • Tonypiano777Tonypiano777 Member Posts: 37 Connected
    edited March 2019
    Hello again.  

    I rang up for the PIP form last week (not come yet though) and it wasn’t a  good start, as the person on the phone was getting rather annoyed having to repeat questions (like tick-boxes i guess). And was shouting at me at one stage though we ended up ok at the end of the conversation,  though after 35-40 minutes of this call, i hope these people are a bit more cordial than this in the future. I told the person  Before-hand as an hearing aid wear i may have difficulties. The person was VERY “rushy” 


    What I’d like to know now though, and have more information on is  the “pre PIP form ” that’s coming, with  tips on how to fill it in, and templates i saw on this website somewhere (but cant find them now)

    For example, I can make beans on toast, and do boiled eggs, but i need a reminder on my phone to let me know when they’re done.  And other things like operating  washers. My sister has to help with that as i just dont have a clue, sorry. And my hearing and dizziness. I get it a lot of the time, but not necessarily ALL the time, so what would I put etc. ?

    I have a welfare rights team who live nearby, (dealt with them before) would i be best ringing them to help fill my form in? Or (like before when i had them) help me with possible tribunals.appeals  etc?  (This was for my ESA 6 years ago) 

    Thank you everyone.


    Piano777 




  • poppy123456poppy123456 Community champion Posts: 22,214 Disability Gamechanger
    When filling out the form you need to put as much information as possible about how your conditions affect you. Adding 2-3 examples of what happened the last time you attempted that activity for each descriptor that applies.

    Operating a washing machine isn't part of any of the descriptors and won't score you any points.

    Preparing food. This activity considers a claimant’s ability to prepare and cook a simple meal for one from fresh ingredients. It assesses ability to open packaging, peel and chop, serve food on to a plate and use a microwave oven or cooker hob to cook or heat food. So for this, do you need to use an aid to help you, maybe you can't stand for long periods of time so you need to use a perching stool?

    No one can tell you what you should put because only you know how your conditions affect you. This guide may help but if you're still not sure then yes, face to face advice would be a start.



    Community champion and 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.
  • Tonypiano777Tonypiano777 Member Posts: 37 Connected
    edited March 2019
    Thanks @poppy123456

    Its a “mixed bag “ in the kitchen etc, as can open cans etc, but cant peel potatoes (for example) and if using a microwave oven is pat of the descriptor (same applies for timing etc) then why not a washer? Thanks for the link/Guide much appreciated.  Ill look at that now. 


    Piano777
  • poppy123456poppy123456 Community champion Posts: 22,214 Disability Gamechanger
    You need to explain why you can't peel potatoes, what happens why you do peel them. Not being able to cook isn't part of the descriptor and won't score you any points.

    A washer isn't part of any of the descriptors. Having some understanding of what the descriptors are all about and what they mean will certainly help. This link is a very long read but i'd recommend you to at least read the descriptors that apply to you.


    Community champion and 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.
  • Tonypiano777Tonypiano777 Member Posts: 37 Connected
    edited March 2019
    Thanks poppy. 

    had a look at the first link,  and whilst Large, is Very helpful.  My main problems arise from Q9 onwards (getting out, mixing with public, going out in cars etc) I’ve not walked in a town centre for example for over 20 years due to chronic anxiety and agoraphobia.

    Also bathing problems too, in which i get “claustrophobia” (since 2007) which means i can’t shower/ bath all at once, as have to do it in stages. (Wash hair downstairs for example) 

    Thanks. 
  • poppy123456poppy123456 Community champion Posts: 22,214 Disability Gamechanger
    For the mobility descriptors then moving around is for those with a physical condition and planning and following a journey is for those with cognitive/sensory and mental health. For mental health then it's very difficult to score points for following and planning a journey unless overwhelming psychological distress (OPD) is present.

    Washing and bathing, 2 points is possible if you need prompting.
    Community champion and 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.
  • AranAran Member Posts: 18 Connected
    edited March 2019
    Hello and welcome to the community @Tonypiano777 im one of the new champions for Scope to help people find information , this link might help you https://www.google.com/url?sa=t&source=web&rct=j&url=https://www.gov.uk/pip&ved=2ahUKEwjxk6j56qDhAhXwXhUIHX-dA2IQFjAHegQICBAD&usg=AOvVaw2gSEm8XUsfgvPsjmFZoUFD 
    All the best Aran 
  • Tonypiano777Tonypiano777 Member Posts: 37 Connected
    edited March 2019
    Thanks Aran,  thanks for the  link much appreciated.  👍

    Thanks for the welcome. 

    Tony. 🙏
  • WaylayWaylay Member Posts: 911 Pioneering

    If you can't get help, please consider joining https://www.benefitsandwork.co.uk/ . I've found it extremely helpful. It costs 20GBP to join for a year, but it has amazing guides which guide you on how to fill in the form, step by step. There's also a really helpful forum.

  • Tonypiano777Tonypiano777 Member Posts: 37 Connected
    Thanks waylay for the link.  Much appreciated.


    Tony 
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger

    Hello @Tonypiano777 In response to your post please I may suggest some helpful advice.

    I know it is difficult for you with your mental health.

    One of the reasons I added the links to the charity .

    When I first replied to you was because not only could they help you with your mental health.

    Also help you with benefit forms. They have experience of filling in forms like PIP. Know what to put the correct and right information.

    Also help with assessments attending with you.

    It might be worth contacting them. 

    Another suggestion is to contact CAB who also have had expertise and knowledge in form filling in.

    I have been doing this a long time.  More than twenty years ongoing.  On benefits and never  fill in a form.  I know I need to get the form right.

    Then I need to contact the right people who know and can offer guidance.

    One other suggestion is I do is notes before filling in a form. Give my answers on a paper. What is needed to fill in. My health history and descriptors.

    This then helps any one who I have to fill in the form.  Together we come up with answers.  Word this correctly. Short and to the point.

    Last visit was to CAB two ladies aided me. While one wrote it in.  I could do that but have decided never.

    Do ask at the assessments. Answer is have problems with forms.

    Other times floating support or outreach worker filled it in with my assistance.

    Please what I forgot to add. The floating support then adds we will put in a report with the form.

    Describing my problems, issues and how are am doing the descriptors.  Why I need floating support.

    Does help.

    Hope this gives you some suggestions.  Some guidance and advice.  Wish you the best in a successful outcome.

    Pleasure to meet you.

    Take care.

    @thespiceman




    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • cristobalcristobal Member Posts: 965 Disability Gamechanger
    Thanks @poppy123456

    Its a “mixed bag “ in the kitchen etc, as can open cans etc, but cant peel potatoes (for example) and if using a microwave oven is pat of the descriptor (same applies for timing etc) then why not a washer? Thanks for the link/Guide much appreciated.  Ill look at that now. 



    @Tonypiano777 - I think that there was another post on here, which I can't find now unfortunately, that said that the descriptors were chosen as they were thought to be the best test of functionality without repeating the test unnecessarily 

    Others might be able to explain better but I think that this means that since using a washer is essentially 'bending down' it may well be covered by bending down to tie your shoelaces - if you can do one you can do the other. Brushing your teeth isn't included but using a can opener/chopping/peeling is.

    If I can find a link to the other message I'll post it for you....


  • Tonypiano777Tonypiano777 Member Posts: 37 Connected
    edited March 2019
    Thanks @Thespiceman for the post and advice. 

    The form came this morning (not opened it yet though) and i did think about what you was saying about filling in the form, and that is,  filling notes in etc,  before actually writing on the FORM itself. I will have a look through it, then problaby contact someone you mentioned, or my welfare rights team (who helped me before on an ESA form and got me in to the support group - rendering a face-to-face unnecessary).  

    I’ll  work on other options too, as i slowly work my way through  the form, and the descriptors. 

    @cristobal

    Like i mentioned above, mobility (not getting out etc) is my main problem, not so much “peeling potatoes” (i could do it if i was shown perhaps), so there are parts of the form that are difficult to answer, but the links above do help https://www.google.com/url?sa=t&source=web&rct=j&url=https://www.gov.uk/pip&ved=2ahUKEwjxk6j56qDhAhXwXhUIHX-dA2IQFjAHegQICBAD&usg=AOvVaw2gSEm8XUsfgvPsjmFZoUFD

    and: https://www.gov.uk/government/publications/personal-independence-payment-assessment-guide-for-assessment-providers/pip-assessment-guide-part-2-the-assessment-criteria#daily-living-activities

    thanks to @poppy123456 and @Aran respectavly 

    Thanks all for the help. I’ll  open the form now to see when they need it back  (not received my doctors letter yet though. - nearly 2 weeks after asking him for one.).

    Tony 🙏
  • poppy123456poppy123456 Community champion Posts: 22,214 Disability Gamechanger
    Yes, now it's mentioned they can associate things like bending down to do the washing with some of the descriptors. It's all part of the " small talk" during the assessment.

    @Tonypiano777 You won't score any points for preparing a meal for not being able to cook because you haven't been shown.

    For evidence, do you have anything else other than the letter from your GP? This isn't the best evidence to send because a GP will very rarely know how your conditions affect you against the PIP descriptors.
    Community champion and 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.
  • Tonypiano777Tonypiano777 Member Posts: 37 Connected
    edited March 2019


    For evidence, do you have anything else other than the letter from your GP? This isn't the best evidence to send because a GP will very rarely know how your conditions affect you against the PIP descriptors.
    Well I’ve not actually got the Doctors  letter yet, but, no I’ve  more evidence than my Doctor.  But he has been  my doctor  for the best part of 20-25 plus years, and has helped a lot when i was caring for my mum with Alzheimer’s at Home (2001-2006), and also for my brother (2007-2017 - who’s now in a nursing home). So he pretty much knows all our famaily and has been to our house many times (mainly for my mum/brother not me. 

    Its a difficult form to fill in (just opened it an got till 19th April to return it) but I’ll  do my best and get support to fill it in. I live alone, but other other members of my family aren’t really “in to these” forms, and i couldn’t expect them to fill it in for me, as they wouldn’t understand like, say, a professional (welfare rights/social worker etc). Ive had social workers/therapist etc, but only for my brother and father, but they did help me when i was getting my brother in to the nursing home as i had a sort of “nervous breakdown” (i collapsed and was taken to hospital) but, on paper, I’ve just got my doctor it has to be said. 

    I’m just wondering if the first part of the form that seems to involve descriptives  like “peeling potatoes, preparing food “bending down” etc are LINKED to things that involve “mobility, getting around, going in to cars etc  That are later in the form ??? Is:  “HOW MY HEALTH CONDITION OR DISABILTY”  assessed as a whole? Or could you still score  as many points for not being  able to get out/communicating with others etc, IF you dont score any points on “preparing food” for example? (Ive seen a few youtube clips were people have had these assessments, and yes, they do trick you Ive heard !)

    And one very young lady who sat almost silent throughout the assement, failed the test, because she looked too relaxed, when she said on her form  for she’s  panicky in public etc.  We’re i actual fa t she was TERRIFIED to speak for fear of “putting her foot in it”.

    Thanks everyone. 

    Tony 🙏
  • poppy123456poppy123456 Community champion Posts: 22,214 Disability Gamechanger
    You can ring DWP to ask for an extra 14 days to return the form, if you don't have enough of time.

    You'll be assessed on the individual descriptors. Even though your GP has known you for a very long time, a letter from him/her still isn't the best evidence you can send. In fact when i recently filled out a review form for PIP one of the things on the "we don't want to see list" was indeed a letter from your GP.

    One of the worst things you can do is to look for negative stories on the internet because this will make things even worse. There's lots of people who successfully claim PIP first time without any problems at all but we don't hear their stories. If someone's had a decision they're happy with they have no questions to ask so we don't hear their story.

    Activity 9 ..engaging with other face to face. If you need support/assistance or prompting from another person to be able to engage with others then it maybe possible to score either 2 or 4 points here. This is for the daily living part and you need at least 8 points for an award of standard rate. There's 9 other daily living activities to look at.

    The following and planning a journey activity is for the mobility part, is not for those with a physical condition.  For mental health it's very difficult to score points here unless you suffer with overwhelming psychological distress (OPD.

    The moving around activity is for those that have a physical condition, if you don't have any problems standing and moving then you won't score any points for this activity.


    Community champion and 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.
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger

    Hello @Tonypiano777 Thank you for reply. Understand the situation you are in. Having been there so many times.

    To give you some reassurance this is you .. I have been one of those members as my friend @poppy123456.  Has described to you in her post.

    I think what is important to concentrate on you . Your own needs not worry about others.

    Anxiety I know too well. What happens if you have the ear worm syndrome in your mind the constant thoughts.

    This in turn becomes unbearable a reminder. This then effects stomach and the rest of the body.  A constant source of anxiety.

    Cannot eat or sleep.

    Reach for things that help you can make you worse.  Alcohol and caffeine . Both effects anxiety .

    May I please say even after all these years every time a form comes through. The letter box brown envelope syndrome still get the jitters and anxiety.

    Even so always contact my GP as well. For reassurance, talk it over . How your feeling. Most Doctors should and are aware of the benefit situation.

    As for the assessment and after speaking to GP that helps as well.  One other thing forgot to mention . Went down recently had given me a card the Doctor.  From services provided by CAB for those with mental health issues and other disabilities. 

    Apparently my area has a special helpline with CAB for those experiencing difficulties.  Some thing to look at plus any sign posting might help.

    As long you are there patient they need to know how you are. Mentally and physically.

    Please can I add what ever direction you decide to take looking at support or guidance. We as a community are here to be supportive, answer any questions.

    I wish to stress that yes I have had positive outcomes and it is those I continue to focus on.

    All I can add please have a look around our website on PIP for anything additional information.

    May I also say look at the CAB website very informative on form filing in and PIP.

    Please take care.

    Always here anytime . For any support. Ready to listen.

    Remember small steps. You be OK.

    Take care.

    @thespiceman


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • Tonypiano777Tonypiano777 Member Posts: 37 Connected
    edited March 2019
    Thank you @thespiceman for the helpful and reassuring post.   Much appreciated. Yes, my sleep as been pretty bad this past 3 weeks (3-4 hours), forcing me to Catch up in the eves (dont like doing it but I try to get as much quality sleep as possible, or these forms, for example, become (literally) impossible to read - let alone fill in. I’m always best “post medication” for about 3 hours then i get anxious again and have to rest from activities.  

    I can be in the garden at 2 pm, pegging washing out, but at 5 PM for example, i can’t  even get out the chair. Its odd really, as people who come to see me (family and friends) always come when Ive taken my  medication (feeling fine, that is, for all of them) but after they’ve gone, i have to sit down again and it seems I’m always “ready for my next medication dose” to make me feel ok.  I sometimes use a stairlift when going upstairs as nervous fatigue (thats a lot worse than one thinks - as it renders me pretty much useless for doing ANYTHING until medication)

    If someone comes when I’ve not taken my medication,  I’m extremely panicky, and sometimes dont open the door. Thanks for all the options youve give me @thespiceman   

    Thanks for the details there @poppy123456

    I’ve not actually heard of OPD, (overwhelming psychological distress ) but my DR (on my last letter years ago) diagnosed me of a similar illness. As for planning a journey.... well,  i don’t/cant get out at all. 

    @Tonypiano777  
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger

    Hello @Tonypiano777 Thanks very much for reply. Much appreciated.

    I am on meds myself have to admit nothing wrong in having bad days.

    Please if it helps you not alone with medication. Understanding you own mind and how you work. Not every body does. Only you know that.

    I think what is important also must remember I am not a medical expert but have been on meds and lots of them a long time.

    To reassure and give you some comfort. It is how you deal with everything.

    One thing I have learnt about any mental illness is never one day is the same.  It is how you deal with that.

    Using coping methods and strategies to get ahead and to use them to deal with every day tasks. Little things I used these from various sources.

    Usually mental health charities. There support staff.

    Built up a knowledge a learning experience. Recognised how I am today.

    So today tired but had a simple stand by snack to boost energy. It is how to adapt your day to cope with anything.

    Something simple PNB Sandwich, bowl of Cornflakes or Fruit. Apples, Pears.  On standby.  All helps.

    Also one suggestion I use is have a diary. You know when you not good or some days when your good. Then put in it the tasks you can do.  Make a date for it. Then the mind is focused and if not do it another day.

    Including sleep plan for it. I wind down around nine all electricals off. Put restful music on.  No TV .  Just some guidance. Had severe sleep issues around addiction.

    Much documented on here. Need to plan my routine. Takes a lot of practice does help though.

    Tiredness, anxiety, stress all part of every day. Combined with medication drags you down.

    I know have been there and still am.  Of course no one is perfect. I am not and have down stress filled anxious days. Like every one else with similar.

    Try not too get stressed or anxious if I can not do this does it matter today. Do it another day. When I am good. Look at the diary.

    Make set days to do jobs small achievements you can do.  Be proud of yourself .  Be kind.  Give yourself rewards.

    I live on my own so me personally has to be an evening meal.

    Make it simple, easy to do. 

    Happy to share .

    Always here anytime.

    Take care.

    @thespiceman



    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
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  • CockneyRebelCockneyRebel Community champion Posts: 5,259 Disability Gamechanger

    The following might help with form filling

    1 - Identify those activities you have any kind of issue with.

    2 - Identify whether the issue is that you can’t do the activity at all; can’t do it reliably, can’t do it repeatedly; can’t do it safely or in a reasonable time. If any one of these apply to an activity then you can’t do it at all and it’s okay to say so. However, as well as ticking the box saying you either can’t do it all need help or aids, remember to say which one(s) of the above apply.

    3 - Have a copy of the PIP points scoring system in front of you. The questions in the form don’t match the points scoring so it’s as well to be aware of this.

    4 - For every activity you think you score points you need to think of 2 or 3 recent examples of incidents when you tried to do that activity. Describe in detail the what, when, where, who witnessed, what happened next etc. Don’t skimp on detail. It’s often better to type it up in Word first rather than write in the form. If it won’t fit then add extra sheets, remembering to put your name, NINO and the question to which the answer relates on each sheet. Alternatively, reduce the font and cut and paste the Word answer into the form. Note that doing point 4 correctly is far more important than supporting medical evidence in most cases.

    5 - Use the extra information section to describe your conditions in detail; the specifics of the symptoms and especially how they interact. 

    Also, if applicable, use it to spell out that you want an ongoing award and explain why e.g. your condition is degenerative, you’ve done all the adapting you’re going to do etc. If you don’t specifically ask for an ongoing award you will almost always get a short one. 

    6 - Assuming your diagnoses are not in question and ditto the prognosis then ask yourself what gap in your evidence does medical evidence fill in terms of points scoring? If you can’t answer that then consider not sending it in. 10 reports all saying the same thing are no better than 1. Volume of evidence, especially medical evidence, doesn’t win you PIP and medical evidence is also not as helpful as your own anecdotes unless you are someone who lacks insight into their own condition e.g. someone with a learning disability or certain mental health conditions. Clarity and focus of evidence wins you PIP. 

    7 - Whilst PIP ask for the form back in 4 weeks they will grant a 2 week extension without question if you ask. However, there is no actual deadline for returning the form in the legislation so that deadline can be extended if reasonable. What could be more reasonable than having a medical condition which slows you down? Ask for an extension as a reasonable adjustment under EA 10 if applicable. 

    8 - By all means get an advice service to do this but if they don’t do most of the above then you’re better off doing it yourself. Welfare rights advisers do not have some magic form of words they use and  their knowledge of the law, guidance or case law only occasionally comes into play at the firm filling stage. No-one especially likes form filling but unless your impairment creates specific difficulties with form filling there’s no reason you can’t do it yourself. It’s all about the anecdotal evidence.

    1 - Identify those activities you have any kind of issue with.

    2 - Identify whether the issue is that you can’t do the activity at all; can’t do it reliably, can’t do it repeatedly; can’t do it safely or in a reasonable time. If any one of these apply to an activity then you can’t do it at all and it’s okay to say so. However, as well as ticking the box saying you either can’t do it all need help or aids, remember to say which one(s) of the above apply.

    3 - Have a copy of the PIP points scoring system in front of you. The questions in the form don’t match the points scoring so it’s as well to be aware of this.

    4 - For every activity you think you score points you need to think of 2 or 3 recent examples of incidents when you tried to do that activity. Describe in detail the what, when, where, who witnessed, what happened next etc. Don’t skimp on detail. It’s often better to type it up in Word first rather than write in the form. If it won’t fit then add extra sheets, remembering to put your name, NINO and the question to which the answer relates on each sheet. Alternatively, reduce the font and cut and paste the Word answer into the form. Note that doing point 4 correctly is far more important than supporting medical evidence in most cases.

    5 - Use the extra information section to describe your conditions in detail; the specifics of the symptoms and especially how they interact. 

    Also, if applicable, use it to spell out that you want an ongoing award and explain why e.g. your condition is degenerative, you’ve done all the adapting you’re going to do etc. If you don’t specifically ask for an ongoing award you will almost always get a short one. 

    6 - Assuming your diagnoses are not in question and ditto the prognosis then ask yourself what gap in your evidence does medical evidence fill in terms of points scoring? If you can’t answer that then consider not sending it in. 10 reports all saying the same thing are no better than 1. Volume of evidence, especially medical evidence, doesn’t win you PIP and medical evidence is also not as helpful as your own anecdotes unless you are someone who lacks insight into their own condition e.g. someone with a learning disability or certain mental health conditions. Clarity and focus of evidence wins you PIP. 

    7 - Whilst PIP ask for the form back in 4 weeks they will grant a 2 week extension without question if you ask. However, there is no actual deadline for returning the form in the legislation so that deadline can be extended if reasonable. What could be more reasonable than having a medical condition which slows you down? Ask for an extension as a reasonable adjustment under EA 10 if applicable. 

    8 - By all means get an advice service to do this but if they don’t do most of the above then you’re better off doing it yourself. Welfare rights advisers do not have some magic form of words they use and  their knowledge of the law, guidance or case law only occasionally comes into play at the firm filling stage. No-one especially likes form filling but unless your impairment creates specific difficulties with form filling there’s no reason you can’t do it yourself. It’s all about the anecdotal evidence.



    Be all you can be, make  every day count. Namaste
  • Tonypiano777Tonypiano777 Member Posts: 37 Connected
    edited March 2019
    Thanks @thespiceman

    Much appreciated post. And an heat felt one too.  

    Actullay I also keep a diary now for myself (as i did for my brother, when he was incontinent, when he was dry,  good bad days etc, seizure(s) and so forth).  So now my brothers’ in a  Nursing home, I keep a diary/log for myself, too.  (also thet times i take my medication, and  it really does vary as my bedtimes do too).

    And yes, about electricals’ and the sorts; (TV/PC/Phones etc) - been guilty of all this, as I  THINK I’ can relax in bed with phone prior to sleeping - but, has the opposite effect. So stopped doing that - now.  

    I too, have energy bars (at the ready), but can be quite costly (protein bars).  its true what is said about “you are what you eat” so i try for a balanced diet each day. High protein is very good.  

    Indeed, reward oneself - most definitely!

    Thanks. 


    @Tonypiano777  🙏

  • Tonypiano777Tonypiano777 Member Posts: 37 Connected
    edited March 2019
    Thanks @CockneyRebel

    Good info there and VERY useful for pre-form filling, and worth printing out for reference too. 

    Thanks you 


    @Tonypiano777 🙏 
  • Tonypiano777Tonypiano777 Member Posts: 37 Connected
    Thanks for the reply @ilovecats. Will take these points in to consideration 👍Do the assessors etc only work’ on the benefit your claiming? (PIP in this instance), or could they notionally think you SHOULDNT have been getting previous benefits in the first place (DLA) and could they take issue with it?   

    Regarding caring for my family and myself, this  doesn’t (didn’t) involve going out, as thats my main problem, agoraphobia and chronic anxiety.  

    As I understand you @ilovecats, its perhaps  best to put my needs in simple terms  and not “over complicate” things, adding random things?.

    Thank you all.  

    Not started the form yet as waiting for help.  

    @Tonypiano777
  • twonkertwonker Member - under moderation Posts: 617 Pioneering
    Thanks for the reply @ilovecats. Will take these points in to consideration 👍Do the assessors etc only work’ on the benefit your claiming? (PIP in this instance), or could they notionally think you SHOULDNT have been getting previous benefits in the first place (DLA) and could they take issue with it?   

    Regarding caring for my family and myself, this  doesn’t (didn’t) involve going out, as thats my main problem, agoraphobia and chronic anxiety.  

    As I understand you @ilovecats, its perhaps  best to put my needs in simple terms  and not “over complicate” things, adding random things?.

    Thank you all.  

    Not started the form yet as waiting for help.  

    @Tonypiano777
    It is highly doubtful if the previous DLA award details would be available to the assessor. However I am informed that the previous PIP documents will be available and I suppose it could colour the thoughts of the assessor if they think - why on earth was he/she given those points last time around.
  • Tonypiano777Tonypiano777 Member Posts: 37 Connected
    twonker said: It is highly doubtful if the previous DLA award details would be available to the assessor. However I am informed that the previous PIP documents will be available and I suppose it could colour the thoughts of the assessor if they think - why on earth was he/she given those points last time around.  
    Thanks @twonker, ill keep that in mind. Much appreciated. 

  • CockneyRebelCockneyRebel Community champion Posts: 5,259 Disability Gamechanger
    When changing from DLA to PIP you can ask for your DLA details and  award to be taken into consideration
    Be all you can be, make  every day count. Namaste
  • Tonypiano777Tonypiano777 Member Posts: 37 Connected
    Thanks all for your replies.  Im
    looking at. The form now and preparing to fill it in (very low sleep count makes this difficult to concentrate though). 

    @ilovecats : what is 11E? , not sure you’re referring to the questions on the form as it’s just 11, 11a, 11b ,11c 

    re: budgeting.  Well my brother who’s now in a nursing home needs what’s called "top up fees” £160 per month and it was supposed to be between my other 3 family members (2 sisters one brother) at £40 a piece, but they no longer pay this now and just pay bits. So I’m paying about £120 per month (should be £40) and I’ll struggle bad without this extra benefit.  I’ll be in debt I’ve worked out.  So although I’m no longer physicals caring for my brother I still manage his finances etc.  Clothing and so forth. 

    @CockneyRebel.  

    I will I’ll ask my DLA to be taken in to consideration.  I have somewhere a copy my last form I filled in. (Though not sure as could have been ESA) I’ll search for it.  When you say “ask” do you mean mention it on the fform? 

    Thanks. 
  • CockneyRebelCockneyRebel Community champion Posts: 5,259 Disability Gamechanger
    When you made the initial phone call, you should have been asked if you wanted your DLA taken into consideration. Although, the criteria are different and it may not help you
    Be all you can be, make  every day count. Namaste
  • Tonypiano777Tonypiano777 Member Posts: 37 Connected
    When you made the initial phone call, you should have been asked if you wanted your DLA taken into consideration. Although, the criteria are different and it may not help you
    Cant remember/recall if that was mentioned TBH. The criteria is most certainly different. Quite a lot of info  and  PIP  



  • twonkertwonker Member - under moderation Posts: 617 Pioneering
    TBH it is not unheard of for the agency that takes the initial calls to start off a PIP claim to ignore various parts of the PIP1 form that they complete on your behalf.
    They are supposed to ask about DLA and just as important if you have any issues that would put you in the vulnerable claimant category.

    Pages 17 and 18 refer. Have a look at all of the questions that they should have asked

    https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/713113/pip1-claim-form.pdf
  • Tonypiano777Tonypiano777 Member Posts: 37 Connected
    edited April 2019
    Thanks Twokker and all. 

    Had a few rough days and little sleep, so not been too good since the weekend. And huge panic attack on Saturday.  Just came on me. 

    I had a decent sleep last night, and in a position to start the form filling today.  First off, I’m wondering about “health condition and year started: my agoraphobia/anxiety  was mainly in the 1990’s, but got progressively worse as time went on, then my  claustrophobia/fatigue  came after this.    So I’m a bit stuck as to what date(s) i can put here, as its been a developing problem (from my road accident actually in 1982  which put me in an induced coma) 

    so if i was filling it in right now I would probably put 

    Agrophobiia/anxiety: 1993 
    claustrophobia c1997 

    However, my condition(s) are a direct result of my road accident which was 1982, so would i be best putting this date? The date that “triggered off” my agrophobia/anxiety?  Its all a bit awkward as cant remember the dates or years even. 


    I dont want to start the form on a negative tone, always wondering what  (dates) my illness affected my ability  to carry out activities. 

    My first official Drs letter confirming i have (i quote:) “My patient  suffers Severe lifelong chronic anxiety and acrophobia, As a result, he is only occasionally able to leave the house”   (end quote

    well, this was dated July 2012, even though ive had it many years before. (This was my new doctor as it where) my previous doctor of many ears acknowledged this but there was nothing in writing.

    ive received an updated letter from my doctor yesterday with similar wording to the above (same doctor) but with the added Claustrophobia, and problems when bathing (anxiety/panic attack) etc. 


    Thanks. 

  • twonkertwonker Member - under moderation Posts: 617 Pioneering
    Thankfully you have an updated letter from your GP. The DWP are unlikely to place much importance on a letter dated 7 years ago.

  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger

    Hello @Tonypiano777 Thank you for contacting the community. Sorry to hear that you not too good.

    I do understand having problems filling in the form. Have you got the booklet that deals with the form. Giving you some guidance. What to put in it.

    I do think one other suggestion to you was to contact CAB.

    They do help, advise and give good guidance. How and what is needed in the form.

    I do understand have some issues going out. I know this is hard for you. As a person with some similar issues especially memory loss. Due to addiction.  Plus mental health issues I am like yourself forgetting medical history.

    If you get you prescription on line. Meds delivered to you. You can down load your medical history from your Surgery website. You need to apply first.

    Do a rough draft on some paper. Related to your health history. What you can recall.

    I know many members have given you some practical advice and some solutions. To the questions that need answers.  On various posts.

    If you care to read through those. Might be useful. Take some notes.

    I do know also the main reason advise CAB because they have specialist members of staff who do this form filling in every day week to week. Constantly.

    I know this because have a friend works for CAB. He is an experienced, knowledgeable gent. Has been my mentor many years.

    He used to help me fill in forms now.  One time if I did not have support workers or mental health teams. With his advice use CAB.

    Please can I also suggest if nervous and anxious to go find some one to go with you. If you can.

    Does help with everything.

    All reassuring for one with anxiety and on edge.. Wish you the best what ever decision you decide to go for. Have mutual respect. As a valued member of the community.

    We are here as a community to help and point you if we can in the right direction.

    May I also add for a successful outcome. That is the main objective and focus.

    Please take care.

    @thespiceman



    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • Tonypiano777Tonypiano777 Member Posts: 37 Connected
    edited April 2019
    Thanks @twonker for the assurance. (This  7 year letter was, however, for. ESA claim , my welfare rights team helped  - and prompted me to get this letter from the doctor and I successfully won my ESA, and was placed in the support group.  All this though, however, was AFTER my ESA was turned down, and that i had to attend an assessment.  With being unable to go out, and attend these assessments, i finally, (after Mandatory reconsideration and appeals.) managed to get this sorted.  Though it took 6 months plus. And many visits to my home from my welfare rights team.

    Thanks. 

    @thespiceman

    Thnaks also for the. Assurance @thespiceman, as on bad days, mainly pre medication, but post medication too, i can hardly concentrate on anything. To make it clearer, although my comuncation problem is poor (that’s on the doctors. Letter too) im “better” at people speaking to me, than, say, having to read the exact same words. I can follow conversation - but only if people talk slowly.  I have to ask the to stop and repeat etc. 

    If i watch a film/documentary etc, or debate, it takes me 5 plus listens/views before i can take it in. I was fully aware of this communication problem when i had to collaborate with group meetings lasting many hours when caring for my brother, arranging appointments etc. I understand youve got problems too @thespiceman.  Thank you, much appreciated. 


    @CockneyRebel
    i do now recall the person on the phone mentioning DLA being taken in to consideration. Took me a while to remember that one though.  cheers. 

    Sorry for errors as on my phone here typing !

    EDIT: was does “flag mean” on the left sid of the post at the bottom? Not sure if its a negative or positive.  

    @Tonypiano777

  • CockneyRebelCockneyRebel Community champion Posts: 5,259 Disability Gamechanger
    Flag is a way of drawing the attention of the Scope team to a post. If something appears in a post that is contrary to the guidelines of the forum, for example advertising or personal details, the the team can address it sooner
    Be all you can be, make  every day count. Namaste
  • Tonypiano777Tonypiano777 Member Posts: 37 Connected
    Thanks @CockneyRebel for the heads up. Now i click on it is see.  

    thanks @ilovecats for the extra info there. Ill just put what the doctor wrote then. (Chronic anxiety and agrophobia/claustrophobia).  In one box rather than add them speperately.  

    Thanks. 
  • Tonypiano777Tonypiano777 Member Posts: 37 Connected
    edited June 2019
    Hello everyone again.  

    I sent the PIP form off a month+  ago, and received a letter 2-3 weeks go from Capita (as well as other letters from them including text messages galore).  I am due for an assessment Monday morning, (i checked the box on the last page “request a home visit”. 

    Unfortunately, i wont have anyone with me to help me along (I have hearing and communication issues) my sister is on holiday, and just cant make it. I requested an appointment change, but the 21st June they gave me was also not appropriate for anyone to come. 

    So then, I will have to have the assessment on my own - Monday morning, and I’m very apprehensive about the whole affair,  what/what not to say, for fear of messing everything up. Can anyone please give me any pointers as to what to expect when he/she comes in to my house ?  I’m sure thy don't expect you to be  perfect at answering all the questions.  I was expecting help from family/friends - but thats now not to be.

    Thank you in advance.  

    PS: going to have to re-read this thread, as cant remember a a single word i wrote - nor the others.  Also going to read through my PIP photo copy over the weekend to keep the information I wrote “fresh” in my mind for Monday.  

     
  • poppy123456poppy123456 Community champion Posts: 22,214 Disability Gamechanger
    HI,

    Just answer the questions honestly. No one can tell you what you should or shouldn't say because we don't know how your conditions affect you. Remember that PIP is about how you're affected at least 50% of the time over a 12 month period, so bare that in mind when you answer the questions. The best advice anyone can give you is to just be yourself. Good luck.



    https://www.turn2us.org.uk/Benefit-guides/Claiming-Personal-Independence-Payment/Go-to-PIP-medical-assessment

    Community champion and 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.
  • Tonypiano777Tonypiano777 Member Posts: 37 Connected
    Thanks  @poppy123456 i will definitively take that onboard, as its easy for me  to ramble on and forget that its “how my condition affects me”  

    The letter is labelled  a “consultation” via the letter, not “assessment “ i assume they’re the same?  

    Thank you.  Will look at the links to.  The CAB link which helped me to fill the form in was very helpful.  

  • poppy123456poppy123456 Community champion Posts: 22,214 Disability Gamechanger
    Yes, they are the same. Good luck.
    Community champion and 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.
  • Tonypiano777Tonypiano777 Member Posts: 37 Connected
    Thanks @poppy123456.  

    Roughly how long is the consultation? As the time (11.45 am) would make it “pre-medication” for me (i take my medication 2 pm and 10 pm) so I’m likely to be more anxious when he/she’s here,  at this time meaning an earlier dose of medication(11.15ish )  would probably be necessary 
  • poppy123456poppy123456 Community champion Posts: 22,214 Disability Gamechanger
    There's no average time for face to face assessments. It depends how many questions you're asked. Some can be 25 minutes and other 1.5 hours.

    I'd advise you to take your medication as you always do.
    Community champion and 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.
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Tonypiano777 . Wondering how you are and everything.

    Hope every thing is positive for Monday. I know you are anxious, nervous do not know what to expect.

    All I can add is I am glad you have contacted the forum. Been given some excellent advice and guidance.

    Please can I also say just be honest and say how you are.

    I would just think remember and just try to be calm . Hope that gives you some reassurance.

    Focus on the positives not the negatives. 

    Wish you well.

    Take care.

    @thespiceman


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • cristobalcristobal Member Posts: 965 Disability Gamechanger
    @Tonypiano777 - I had my assessment at home. Based on my experience I'd advise:-

    Have a copy of you application form with you to refer to.

    I imagine you might be asked "how often do you do x" or " How many days per week do you do y" so if you can make a note of things like this on your application. E.g. I said I get tired a lot and had to lie down and was asked "How often" and I'd made a note in advance.

    Remember that you must be able to do things 'reliably' so if the assessor says "Can you chop vegetables?" what they are really asking is "Can you chop vegetables safely, as many time as is necessary, to an acceptable standard, taking not less than twice as long as an unimpaired person" 

    If you can't then say 'No' and the assessor will ask you why you can't.

    The 'reliability' criteria are a bit of a mouthful but I had them written down on a separate sheet in front of me.

    Hope that this helps...

  • Tonypiano777Tonypiano777 Member Posts: 37 Connected
    edited June 2019
    Thanks all for the extra tips and comments.  Will spend most of tonight,and tomorrow “revising” and seeing what i can say Monday.  With my sister not here with me though, it makes it more difficult though.  I Hope your 25 mins is  nearer the figure poppy12345  than the latter 1.5 hours 




     
  • Tonypiano777Tonypiano777 Member Posts: 37 Connected
    edited July 2019

    Hello all again.  PIP Assessment and Award”  


    Its Been a time since I last posted. Hope everyone’s fine and well.  


    I had my assessment just over a month ago, and it was about an hour long - or so (the HP* had an alarm to start/finish the assessment -it appeared). 


    The HP came a bit early and caught me “off Guard” as it were, and had to take my medication as soon as the HP came down my yard, so I was pretty well worked up At this time until my medication kicked in, which was over half way through my assessment (usually takes 30 mins for my medication to “take”) 


    And so we started with the usual questions/answers I’ve seen both here, and elsewhere, describing my day-to-day activities,  and in what way I’m affected by them etc. 


    I was very nervous/fidgety  throughout, probably more than I thought I would be TBH, and drank 2-3 glasses of water just during this one-hour visit. (Needed the toilet twice) 


    Anyway, the HP went through the bases (eating, preparing food and so forth) but kept backtracking/pondering over the bathing and shower element.  (Probably because this was my strongest case for daily living points - I don’t know  🤷‍♂️), as the HP kept asking me if I use the hand-rail in the shower room for my balance, or to STOP me from falling. In effect I said “both” (severe balance can, and does cause me to fall (including dressing) unless I’m holding on to something - and I told the HP this).  


    It was when we got to the mobility that i felt i needed to put my best-foot forward (for want of a better phrase), as this was my “strongest part “ for gaining points. It was the getting-out/overwhelming distress part the HP was most interested in (or so I gathered).  And So it went on.... (no physical test’s /bending Down etc were needed, though with my severe balance problem I would have welcomed this to prove a point - but my nerves weren’t too good At this time and I started to get MUCH more anxious - though i tried to keep things real). 


    After the assessment I was told 4-6 weeks etc for the decision, and received several texts, letters etc, updating me on progress - and “we’ve received all the information to make a decision “ etc. 


    I received my decision  this morning (Friday 12th)  and was awarded standard mobility - £23.20, a loss of about £25.00 from my DLA  (planning and following a journey) I didn’t receive anything on “moving around”. 


    I didn’t get anything on the daily living components either, with 2 points being a total under all the categories combined.  I was Very surprised - if not disappointed here considering the effort i put in on my PIP claim-form. 


    Reading the “My decision” on my PIP award letter today, thus: 


    1. “””””You maintained good eye contact (heard lot’s about this on various media forums etc) without appearing anxious, agitated or tense””


    I couldn’t have been more anxious, agitated or tense. I was extremely anxious, agitated and  tense - and very nervous too -  and full of anxiety. I was also perspiring a lot, though the decider said “increased sweating wasn’t apparent”. My balance was very bad too - and yes, I get bad balance from sitting too.  


    The last sentence of the decider in my PIP letter today said: 


    “””“I cannot consider awarding you PIP for any help you need for anything not covered by the DLMA (daily living) including sitting down to dress etc””””  (which I wrote on my form by the way) 


    Well, its because of my severe balance problem I have to sit down to dress - so why wasn’t this taken into account ?   - and lots of other things I've not mentioned, but been going on now too long (very sorry) but a full two-pages (A4 prints) of “additional information” I sent WASN’T even uploaded on to the HP’s laptop, as when I showed it, the HP said: “”I Don't have that (letter) here At the moment, but I think the DWP will have it on their system - so don’t worry ”’” (though when I was taking notes about this, the HP seemed  agitated, nervous even - and I picked up on this - and the HP  said repeatedly:  “””Its, OK, its OK - , I’m sure we’ll find it”””  - with a “nervous” frown (I wasn’t alone) 


    There’s more to be said but had an hour to spare.   Thank you all for your helps, and I’m very grateful to have received what i have done, even if I am on a weekly loss of <£25>. It’s something we have to deal with. Right? 

    Thanks for all the help you've given me, much appreciated.  

    TonyPiano777

    (*HP = *health professional )

  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Tonypiano777   Thank you for sharing with the community what you have been through.

    You mentioned the loss of money from your award. You could appeal that decision if you wish to.

    Do a Mandatory Reconsideration with reasons why. I believe there is a time limit usually a month need to reply.

    More on our website.  

    The problem is if you did appeal then you they look at the whole award. You might lose more points.

    Sorry to tell you that. I know myself.  My own circumstances. 

    Every time I had a assessment a report has found some misinformation or this was not included.  I know it does start asking your self the questions what is the point of my self getting the information if it is not included.

    What is important to you is the award can you live with out an extra £25 .

    One final point what is important to you, peace of mind and reassurance you need from the community.

    I know when have gone through assessments need the words of some one who has been there.

    Know do not wish to think about going through that again.

    Until the next time then I know what I need to do.

    That does help by the way . Once your done one then it is continuous and you know what to expect.

    Never easy.  Being doing this a long time.

    Please if we can help with anything else please get in touch. Be happy to be supportive.

    Take care.

    @thespiceman


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  • poppy123456poppy123456 Community champion Posts: 22,214 Disability Gamechanger
    Hi,

    Sitting down to dress... the question here is whether or not what you sit on is classed as an aid or not.

    For the purpose of the PIP assessment, aids and appliances may be everyday objects, but whether they are considered as aids in any particular case depends on how the claimant uses the object compared to how (if at all) it might typically be used by someone with no relevant impairment. Where the object would usually or normally be used in the same way by someone without any limitation in carrying out the relevant activity, it is unlikely to be considered an aid or appliance, for example sitting on a bed whilst getting dressed or using a pan with a rubber-grip handle when cooking. In those instances where claimants make use of such items, they should be scored as being able to complete the activity unaided.

    You need to score at least 8 points for an award, so before you request the MR if that's what you're thinking of doing you need to look at the PIP descriptors to where you could score those extra points. You only scored 2 points, so you need another 6. It's highly unlikely you will score any points for dressing and undress for using the aid. There's 10 daily living activities in total is it possible for you to score points in another activity?

    I'd advise you to spend some time to look at this link to give yourself more understanding of the descriptors and what they mean.

    If you do decide to request the MR then you need to put this in writing, stating where you think you should have scored those points and your reasons why. Adding 2-3 real life examples of what happened the last time you attempted that activity for each descriptor that applies to you.

    Request a copy of the assessment report, if you haven't received it already but avoid mentioning any lies or contradictions that maybe in that report because they won't be interested in any of those.




    Community champion and 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.
  • Tonypiano777Tonypiano777 Member Posts: 37 Connected
    edited July 2019
    Thank you @poppy123456 and @thespiceman for the replies. Much appreciated.  

    Thanks for your kind words and thoughts @thespiceman.  I did consider the possibilities of things going wrong on my MR/Appeal etc, and think I’d better just “leave things”  as they are.  However, my welfare rights team have sent me a letter (via my request, although I wasn’t sure what letter Was going to entail) its an “authorisation to act”   On their behalf. (Two letters actually, which differ slightly).   

    It has a pre-paid envelope and says things such as:

    1).Date of decision —/—/—/
    2).Benefit awarded from —/—/—/
    3).At a weekly rate of £####
    4) Backdated amount.  £####
    5) Benefit refused ————-(please tick) 

    6)  My claim was successful/refused (please delete as applicable)
    7)  I get an Extra—————Per week 
    8)  I received an arrears payment of £—————-
    9) I was told my result of my claim on —/—/—/
    10)Authorisation to act.  

    So, I’m to send ALL my PIP letter (7 pages) that came yesterday, and as I gather, they will Check the form thoroughly to see if ive been awarded the correct amount, and at the right/wrong rate etc.  

    Can i live with the £25.00 loss? I “can”, but it doesn’t make easy reading though, when totalled for a year (£1,300). I hear many stories on the news saying things  like “we’ll be hundreds, of pounds worse off each year” etc - but you never think its going to happen to you! Here i am 🙈

    @poppy123456

    I filled the PIP form in almost religiously from the CAB guide that is linked here https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/help-with-your-claim/how-to-claim    

    Things like (quote from-their site) You should probably tick “yes” if:
    • you need to sit down while preparing or cooking - a stool or similar counts as an aid.

    And there are similar related suggestions of which to put down on your form.  Maybe DWP/HP’s don’t necessarily follow these guidelines and overlook them? Don't’ know.   But Zeros across the board (save one) seem a bit harsh.  

    I got 10 points for my mobility component (moving around) and written on the letter I received yesterday was thus: 

    Moving around (scored out of 12)  - 10

    “You cant undertake any journey because it would cause you overwhelming psychological distress “

    And thats pretty much it as far as points go, save 2 points for “Communicating”

    You need an aid or appliance to be able to speak or hear”

    I am an hearing aid wearer, so that was probably the 2 points awarded here.

    At the end of the day, I’m fine with it, as i could have be refused on all criteria, and I’m  aware many people in unfortunate circumstances that receive NOTHING 🙁

    Though i did read (possibly on these forums not sure) that :
    “You cant undertake any journey because it would cause you overwhelming psychological distress”  Will award 12 points in most cases ( i read)   🤷‍♂️

    Thanks for the links too. Much appreciated.  

    PS: it says on the letter: “””I can award you the standard rate for an ongoing period”””  which is how long? (Roughly) 

    and also: “””We will contact you while you’re getting PIP to see if your needs have changed and to look at the amount you get This will be after 9th June 2029.”””

    So 10 years for before they contact me? 🤷‍♂️

    Thank you All @Tonypiano777
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Tonypiano777   Thanks for your reply. 

    I know my own personal circumstances.  Also been aware of some of our community struggling and striving constantly to get the required points.

    I know myself this as well.  The most important aspect I think is to look at this the assessment as a learning experience.  Knowledge is the key here.

    Make notes or retain  relevant information either from links provided by @poppy123456 or anything forms or information booklets.  For reference purposes.  

    Always useful to use and benefit from.

    Wish you the best. 

    Take care.

    @thespiceman


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  • Tonypiano777Tonypiano777 Member Posts: 37 Connected
    Thanks once again @thespiceman for kind words and help. Much appreciated.   

    All the best. 


  • Tonypiano777Tonypiano777 Member Posts: 37 Connected
    Hello again all. I’ve been off it for a while with severe balance problems, so needed to take some time out especially from “screen glare” as my balance is becoming progressively worse.  


    Ive  received  an ESA form today (ESA50) for my BROTHER who’s in nursing home, (i care for him) and is severely mentally handicapped with epileptic seizures and now (since my last post in July) is on OXYGEN after a 18 day emergency admission to the hospital in the respiratory section (high dependency Unit i think it was called). 

    Anyway, he’s now back in  the nursing home and is ALREADY ON ESA, but received a letter today from the Health Assessment Advisory Service.  Got till 27th November to fill it in. 

    Since my brother had been in the nursing home 2.5 years, I’m wondering if it would be better for the nursing home to fill the form in?, as his medication, needs, condition etc are now monitored 24/7 by the nursing home, so I’m not sure how to go on in filling this form in. For example, walking/getting around, movement/incontinence  etc are different - as he now sits in a chair half the day - then bedrest for the rest - and with the oxygen mask on(this is at bedrest 2-5 pm, and bedtime).  

    Also, if i may add, I too am on ESA as well (contribution based) and I've had a look at the form and wondering if ill get one of these? And, as I’m now on PIP (lowest rate £23.20) I’m wondering what procedure to take? (“Planning and following a journey “ was my award for pip). Maybe follow a similar route as i did on my PIP form?

    (I’m still in the process of waiting for a mandatory reconsideration for my PIP too)!

     
    Thank you all 

    @Tonypiano777
  • Tonypiano777Tonypiano777 Member Posts: 37 Connected
    ilovecats said:
    Send in a copy of his care plan, that will speak volumes 
    Hi 

    well, i think they’ve got there own care plans now, as mine would be outdated (seizure charts etc). Thanks,  and will mention care plan when i take it to the home on Friday when we go to see him.  


    🙏 
  • poppy123456poppy123456 Community champion Posts: 22,214 Disability Gamechanger
    It will be their care plans you would need to send and not your own.
    Community champion and 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.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,672 Disability Gamechanger
    Hi @Tonypiano777, sounds like you have a lot of forms on the go! I would advise getting his post up to date care plan to send in and make the nursing home aware of the form.
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  • Tonypiano777Tonypiano777 Member Posts: 37 Connected
    edited October 2019
    Thank @Chloe_Scope ☝️

    Yes, the nursing home aren’t that “form-friendly” so don’t want them to have it forever.  :smile:  the care plan (current) has to be at the nursing home now, as he’s highly dependent on them - and not me, and whatever i put on the form, may have changed (his medication for example - as he’s now on epilepsy ”rescue remedy” to make sure he comes out of a seizure). So ill show them the form on Friday when we visit him, and hope they oblige and play ⚽️ with me!  after all, its the ESA thats paying for the nursing home - plus other benefits. 

    🙏
  • Chloe_ScopeChloe_Scope Scope Posts: 10,672 Disability Gamechanger
    I hope so @Tonypiano777! If you could ring up before your visit and ask for a copy of his care plan, this would be great evidence to have. Fingers crossed and please let us know how it goes!
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  • mikehughescqmikehughescq Member Posts: 5,000 Disability Gamechanger
    A strong word of caution as regards sending in care plans or indeed any one size fits all/magic bullet type solution. There isn’t one. No shortcut. 

    A care plan does not reflect care needs as a whole. It only reflects those needs which are above the threshold for a local authority to provide specific services. Therefore, care plans often only show what a local authority can afford/is prepared to pay for rather than the whole of a persons need. Unmet need - the stuff they recognise is needed but can’t/won’t meet - ought to be recorded so as to present the full picture, but, it often isn’t. Indeed, it almost never is in my experience.

    Therefore, care plans can be more illustrative than accurate and rarely paint a full picture. Fortunately most healthcare professionals are so poorly trained that they don’t recognise this (in the same way they think someone being registered severely sight impaired will always have worse vision than someone registered as sight impaired or not registered at all). 

    Just as importantly, a care plan is aimed at health and social care. It literally tells you nothing directly about capability for work. It’s perfectly possible to have a care plan which delivers a whole pile of social care and yet the person is found capable of some work. There’s nothing illogical in that because many profoundly disabled people do work full-time. 

    So, you can’t simply rely on the care plan. The ESA 50 needs to be fully completed and supported. What this means in practice is that you should read each question as being preceded by the phrase “In a work environment can they safety and repeatedly...” and then give 2 examples per activity of what has or would happen when they have, or if they were to have, attempted that specific activity in a workplace. Could they do it safely? Could they do it repeatedly? If not, then specifically why not.

    Ultimately this will be of at minimum equal value to a care plan. Actual real world examples of incidents will always win out over a document describing something often far removed from capability for work. 

    As regards the home filling the form in. No, absolutely not. Staff are not trained in form filling for ESA and whilst he may have been there years the staff completing the form may not have been and may only be able to describe their recent and partial experience. Someone who only does night shifts can only describe night time issues and so on. I recently had a case where a lovely person at a care home told me with great confidence continence was a recent issue in the past few weeks. A relative pointed out that the stuff member had worked there three months and with their relative  for... two weeks. The continence had been an issue for four years. 
  • Tonypiano777Tonypiano777 Member Posts: 37 Connected
    Hello ,

    Sorry didn’t reply to post @mikehughescq as no mail alerts (for some reason). 

    Anyways, the nursing home have filled the form in and sent it back to me this morning. They’ve done what  Ive asked them to do, and that is; fill the sections in that i can’t  (oxygen times/seizure charts/medication sheets and so forth) ive had a look over it and looks ok.  Hope it goes on ok.  Thank you. 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,672 Disability Gamechanger
    I'm glad you managed to get this done @Tonypiano777! I hope it all helps. :)
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  • Tonypiano777Tonypiano777 Member Posts: 37 Connected
    I'm glad you managed to get this done @Tonypiano777! I hope it all helps. :)
    Thanks ever-so Chloe !  I had to add a few bits here and there and “extra information” I already told the care home to fill in what they can and I will “fill-in” the blanks :smile:


  • Chloe_ScopeChloe_Scope Scope Posts: 10,672 Disability Gamechanger
    Amazing @Tonypiano777! :)
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  • Tonypiano777Tonypiano777 Member Posts: 37 Connected
    Hello all.  

    I hope you are keeping well in these challenging times. 

    Just to let you know that the PIP form  for my brother went fine. And I am now on pip myself, but after a mandatory reconsideration, I had to remain on the lower rate.   Quite disappointed really, as 10 points for “getting out” - which I can’t - should really be 12 points. Maybe they have their thoughts and ways, or that it was best for them, to keep me off the higher rate (that thoughts been reoccurring). 

    Thanks for all the help you’ve e given my. Much appreciated. 
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