PIP, DLA and AA
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Change of Circumstances

DuffersMumDuffersMum Member Posts: 119 Pioneering
Not posted for 18 months or so.  I was awarded standard care and standard mobility until Feb 2022...I’ve been plodding along since my last assessment.  My condition is now getting worse...about to have X-rays on my hands as GP thinks I now have osteoarthritis there, I’m finding it hard to undo cans, use a normal knife and fork, pick up pans/kettle etc...as well as that the OA in my hips and back is getting worse. A T2 diabetes diagnosis is also looking likely and I suffer greatly now from numbness in my toes (possibly connected to the T2) which makes walking even more difficult (happy days eh :(

I received a letter last week advising that they are extending my award until November 2022 but I’m thinking if the X-rays show OA I should possibly do a change of circumstances?

I’m not sure how PIP assessments are being carried out at the moment or how far behind they are in dealing with claims/changes.

Any advice will be greatly appreciated..

Replies

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

    Have you looked at the PIP descriptors to see if it's possible to score more points than you already have? PIP isn't about a diagnosis, it's how those conditions affect you against the PIP descriptors. Reporting a change of circumstances mean you'll be sent more forms (PIP2) to fill in and return. https://www.citizensadvice.org.uk/Documents/Advice (public)/PIP – table of activities, descriptors and points.pdf

    Face to face assessments are still suspended and most people are having telephone assessments.

    Although your award has been extended, this doesn't mean you won't still receive the review forms 6 months before your original award date ends. They are extending a lot of peoples awards because of the backlogs.

    Good luck,. what ever you decide.

    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.
  • DuffersMumDuffersMum Member Posts: 119 Pioneering
    Yes the letter said they would be in touch, I’m expecting it to be around August still but will give them more time to assess and award as appropriate, that’s not a problem,

    My last application was based more around my mobility problems, I’ve looked at the descriptors and think I could possibly get more points under the care element, from memory I think I was only one or two points off getting enhanced care...I have to use more aids now for daily living duties (damn nuisance and does my head in, I find it so frustrating that I can’t open a bottle of milk etc without needing something to assist)
  • janer1967janer1967 Member Posts: 9,340 Disability Gamechanger
    Hi and welcome 

    Nobody can really tell you what to do but personally I would wait until your review as a change will trigger a new assessment and decision and you could risk losing the award you have .

    But that is just my opinion if you feel you would get a higher award then that's your decision just weigh up how much that would mean to you given going through the process 

    Good luck in whatever you choose 
  • DuffersMumDuffersMum Member Posts: 119 Pioneering
    Yes, I realise there is a risk but if a condition has go worse, or a new condition appears then it shouldn’t (but we all know how assessors are different, I had an awful one who spouted a load of lies, whereas my husband had a lovely one who took note of everything he said)  I’m waiting to see what the X-rays say before making a decision 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
     PIP isn't awarded based on any diagnosis, if your worsening or condition has been present for at least 3 months and you expect it to last for at least another 9 months and you think you can score more points for a higher award, i don't see what difference an X ray result would make to how your conditions affect you.
    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.
  • lisathomas50lisathomas50 Member Posts: 3,895 Disability Gamechanger
    @DuffersMum alot of people say that they lie i always do everything in writing and tske a copy for myself  I find it alot easier lol 😆 
  • DuffersMumDuffersMum Member Posts: 119 Pioneering
    Poppy, yes I know that but I just feel having some evidence about my condition would at least prove I’m telling the truth...my last assessment was full of lies in the report..next time I intend to give every single piece of evidence I can...for instance the assessor said because I didn’t go to pain management then my problem was obviously not worthy of being considered..that my GP thought it wouldn’t make an iota of difference to my condition if I went was totally ignored...also the hand problem could be associated with the most likely diagnosis of T2 diabetes I’m shortly to receive..so GP wants to know one way or the other.  
  • lisathomas50lisathomas50 Member Posts: 3,895 Disability Gamechanger
    @DuffersMum maybe the xrays eill show weather you have another condition aswel I did the same got every shred of evidence I could get 
  • janer1967janer1967 Member Posts: 9,340 Disability Gamechanger
    I have t2 diabetes and yes the issues with the hand can be related this is peripheral neuropathy.

    I am no medical expert but in my experience I had been diagnosed t2 for over 25 years b4 this neuropathy developed , everyone is different 

    They say less is more with evidence and unless it is relevant and details how your condition affects your daily living then I wouldn't wait for it 

    By the time you get results from all the tests you could have your review forms anyway 
  • DuffersMumDuffersMum Member Posts: 119 Pioneering
    janer1967 said:
    I have t2 diabetes and yes the issues with the hand can be related this is peripheral neuropathy.

    I am no medical expert but in my experience I had been diagnosed t2 for over 25 years b4 this neuropathy developed , everyone is different 

    They say less is more with evidence and unless it is relevant and details how your condition affects your daily living then I wouldn't wait for it 

    By the time you get results from all the tests you could have your review forms anyway 
    I’m hoping that is the case with the hands..I suspect it’s more likely OA as my body is riddled with it.

    My GP wants the X-rays..I’m just interested to know one way or the other..I think I will find my award letter and compare how I was then, to how I am now and then make a decision.

    thanks 
  • CressidaCressida Member Posts: 785 Pioneering
    @DuffersMum . This site is very good and offers a lot of 'aids' to help in the kitchen. You might find something there to help a bit. 
    https://www.completecareshop.co.uk/household-aids/kitchen-gadgets/


  • DuffersMumDuffersMum Member Posts: 119 Pioneering
    Cressida said:
    @DuffersMum . This site is very good and offers a lot of 'aids' to help in the kitchen. You might find something there to help a bit. 
    https://www.completecareshop.co.uk/household-aids/kitchen-gadgets/


    Thank you, much appreciated 
  • DuffersMumDuffersMum Member Posts: 119 Pioneering
    I’ve found my last award and I think I should definitely get another 2 points on daily living...I got 9 points last time but she omitted to give me 1 point for using a pill box (told you she was useless) so with that as well it should get me up to 12 points.  Whilst my mobility has got worse (well the back problem more than the legs) I doubt I’d get given the 2 extra points I need there to get enhanced for that but I will of course mention how it affects me...you never know!
  • CressCress Member Posts: 498 Pioneering
    Is it a dosette box supplied by the pharmacy?
    I use a pill box but fill it myself and got no points for this.
    Just thought I'd mention :)
  • woodbinewoodbine Community Co-Production Group Posts: 3,824 Disability Gamechanger
    @DuffersMum maybe the xrays eill show weather you have another condition aswel I did the same got every shred of evidence I could get 
    has to be said that "conditions" don't get you PIP but the care and/or mobility issues that arise, thought you might have been aware lisa as someone who used to do PIP appeals?
    my advice is given freely and is correct to the best of my knowledge.
  • lisathomas50lisathomas50 Member Posts: 3,895 Disability Gamechanger
    @woodbine I didn't say the condition will get her pip but the condition could affect the use of her hands thst will make it difficult to fo things that will help her get pip its the condition thst causes the problems  and depends a debate on channel four why do alcoholics get pip and some one who has a false leg cant 
  • woodbinewoodbine Community Co-Production Group Posts: 3,824 Disability Gamechanger
    Oh go on then, someone with a false leg maybe able to function perfectly well, but if they have care and/or mobility issues they might get PIP . As for alcohohics please don't go there we lost the wifes brother 3 years ago due to his drinking, and no he didn't claim PIP but he probably could have even though he was working upto the day before he died.

    I will repeat for the benefit of those who actually bother to read what I type PIP is not paid because you have x y or z illness/condition but for the care and/or mobility issues that you have.
    my advice is given freely and is correct to the best of my knowledge.
  • janer1967janer1967 Member Posts: 9,340 Disability Gamechanger
    Interesting @lisathomas50 and @woodbine I am an amputee with a prosthetic leg that I am unable to use 

    So as stated some people with false leg get back to almost full mobility but will still need to use a wheelchair at times eg you dont wear the leg in bed so if you wake up needing the loo it takes a while to put a leg on so most use chair for this instead 

    Also if there is any irritation on the stump site you cannot wear the leg 

    Not everyone can use a false leg 

    My knee will not support me enough to use mine it dislocated due to increased pressure 

    I am also blind in one eye so this affects balance and have no feeling in my other leg so I cant feel uneven surfaces or see them 

    It is far safer tho disabling to use my wheelchair 

    Sorry if I have gone on a bit but was just pointing out irh my own example that it's not about diagnosis but how you are affected by that condition 
  • lisathomas50lisathomas50 Member Posts: 3,895 Disability Gamechanger
    @woodbine id mainly how does your disability affects you not everyone on pip has care  
  • lisathomas50lisathomas50 Member Posts: 3,895 Disability Gamechanger
    @janer1967 and that is what I was trying to say there was a programme on channel  four a  whilst ago about pip and the lady who had a false leg couldnt get pip and the lady who was an alcoholic could   

    But whatever I say is wrong  
  • janer1967janer1967 Member Posts: 9,340 Disability Gamechanger
    @lisathomas50 I wasnt getting at what you said 

    I was just pointing out how what looks like the same disability affects people differently 

    Some amputees do get pip some dont as lots go on to near full mobility 

    I am sure people look at me and think why doesn't she have false leg but it just isnt that simple 

    Believe it or not you have to be approved to get a prosthetic leg by physio report  and be under a certain weight and get consultant approval 
  • lisathomas50lisathomas50 Member Posts: 3,895 Disability Gamechanger
    I know its hard as I had a man who tried it when I worked in care and he didn't cope with it very well 

    The programme was actually very good the lady who had the false leg cant spell the proper name desperately needed help she had applied and was refused it showed all her daily  life and the struggles she had in everything she got realy poorly 

    Then the other lady drunk as a lord turns up at her assessment drunk with a bottle in her hand not a care in the world got her pip she  had carers in that were paid for meals cooked for getting food from the food bank the lot on pay days she would buy loads of booze  use all her pip buying booze in the program she left the carers in the flat 

    It was a good programme thecswsnsea love story was the same they got pip and they were all taking drugs again a good programme but makes you wonder how pip gets it so wrong 
  • woodbinewoodbine Community Co-Production Group Posts: 3,824 Disability Gamechanger
    @lisathomas50 I don't think anybody said that whatever you say is wrong, what does hack me off sometimes is this argument you see across the media when people have this argument about i'm more disabled than you because of a,b or c, all disabled people are just that..disabled and the idea behind forums like this is that we help each other out as best we can.

    And thanks @janer1967 for that insight into your problems, and how the same disability can and does affect different people in a different ways.

    I'm sure people would look at me sometimes and think well he's ok, but then they don't see me when i'm banging my head against the floor trying to bite chunks out of myself, and when they ask me how I am and I answer yeh i'm ok because its too much trouble trying to explain something you know they wouldn't understand, or the pain I feel when i think of the number of friends my disability has cost me, or why 23 years on i'm still bitter that it cost me my career !

    Life really can be a ****, but we have to shake ourselves down stick a smile on our faces and carry on as best we can. 
    x
    my advice is given freely and is correct to the best of my knowledge.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    I don't usually speak about this but my dad was an alcoholic, sadly he passed away on 12th Feb 1981. He was 37. I was just 9 years old.

    Please don't compare 1 person against another. We all suffer with our disabilities in one way or another and no one is any worse than the next person. No one knows what goes on behind closed doors.

    You can have a disability but not be entitled to PIP because if you don't fit the descriptors, you won't score the points for an award.

    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.
  • lisathomas50lisathomas50 Member Posts: 3,895 Disability Gamechanger
    @woodbine I have lupus but  how I see it is so what I am alive I csn still do things iieaz 18 when I started to get ill  I was diagnosed with all sorts of things but at 26 I was diagnosed by professor Hughes Louise  Cooper unit st Thomas hospital London 

    I had already had a stroke and a heart attack before  that  I was told I wouldn't live long  told me I wouldn't be able to carry a child I had 4 children by then and six miscarriages  he was shocked he told me I wouldn't be able t to work

    I ended up hsveing ten children two sets of twins mind  I worked nearly all my life  and I am 58 everything he said I couldnt do I did the corona virus has more chance of killing me off than my lupus  don't get me wrong I have had carers I do struggle and I am in pain if any one asks I normsly say I have the ability to do things when I can  

    I said for the lady to have her xrays  on her hands so she knew what was wrong and new what to expect as it is better to say that you can't use  your hands properly and why  you can't than say you don't know 
  • lisathomas50lisathomas50 Member Posts: 3,895 Disability Gamechanger
    @poppy123456 I was saying about a  programme that was on about pip using two different ladies one was an alcoholic   without a  care in the world  and was awarded pip lady with the false leg didnt and showed how the two lives were lived 

    The same as swansea love story they all got dla  they were all drug addicts but people who really  need it can't get it 
  • chiariedschiarieds Community Co-Production Group Posts: 8,105 Disability Gamechanger
    Hi everyone, may I politely add, if anyone wants to google it further, that alcoholism is a medical disorder. In some people it's a genetic predisposition to it. My son-in-law is an alcoholic. In his case, he had a gastric bypass some years ago. Losing his brother caused him to start drinking nearly 3 years ago. With his surgery he really shouldn't drink, as one glass of wine is as if he'd had 2 or 3. His problems with his alcoholism have caused our family great grief, but it's also a disorder.
    @lisathomas50 - most disabled people are successfully awarded PIP, but in some circumstances it may just come down to one person having a better understanding about the PIP descriptors than another....which is often where members here try to help. 
    PIP is about your functional problems, & whilst getting an X ray to work out the problems a person might have is useful, you don't need a diagnosis, all that's needed is the exact way you have difficulty with activities of daily living &/mobility.
    Your opinion is just as valid as anyone else's. You don't need to keep on having to have the last word, nor to infer you know more, I'm hoping to say...everyone's opinion is equally valid, & we all contribute due to either knowledge, & life experiences, or both.
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