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PIP experience - glimmer of hope

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Cartini
Cartini Community member Posts: 1,108 Pioneering

Good Morning all,

I`ve spent the last few weeks in the background reading comments about PIP on this forum; some good, some bad, some indifferent and some touched with a hint of impatience (the latter of which I can be guilty of).

I was diagnosed with lumbar & cervical spondylosis some 20 years ago, and it`s slowly getting worse, more so of late.  Not once did it occur to me that I could, or should, apply for PIP; my mind was changed when a very close friend was diagnosed with Parkinson`s and lung cancer in the same year (2021).  She suggested that I apply for PIP and the rest is, as the expression goes, history.

Compared to some contributors on here, I seem to have got away lightly with my application:

I applied, via phone, on the 14th December 2021.

My application (54 pages of answers and evidence) was posted on the 7th January 2022.

It was signed for on the 14th January.

I didn`t receive any initial texts because I misread my phone number to the operator on the other end of the phone during my initial application, but I soon rectified this.

I received a text stating they had received my assessment on the 29th March.

On the 29th I applied for a copy of the assessment report (PA3) which I received on the 30th.

This morning (6th April), there is a pending entry from the DWP in my bank account - so they had completed a paper based assessment for me.

That was the good part of the application; quite smooth, not a particularly long wait (bearing in mind I can be impatient), and awarded enhanced for Daily Living.

The not so good part is that the assessor has contradicted herself when assessing my ability to walk 200m.  Throughout the assessment report, for the activities that involved walking or standing (inside and outside); she consistently used the expression "significant pain", "fatigue" and "breathlessness".  When it came to the mobility part she states I can no longer walk around the supermarket because of "significant pain" and if I go to the local corner shop (a lot less than 200m - measured in Google Maps and included in my application) I would "have to lie down due to significant pain and fatigue" when I get back in.  Yet her closing comment was "This suggests he would reliably manage this distance" for 2b.

 Throughout my application I`ve consistently stated that I just have to stand up to experience chronic pain, but she seems to have had a "pain filter" on when reading it.

Needless to say, and not until I`ve received the notification letter, I will be considering a Mandatory Reconsideration for the mobility part; I just have to research how to phrase my situation in a way that will, hopefully, move me to 2c).  Any advice on this point would be gratefully received.

 The main point I`m trying to make is try not to be impatient; your application is trundling along the conveyor belt of Civil Service Officialdom.

 Andy

Comments

  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
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    Thanks for sharing your story @Cartini, I'm glad to hear that your experience with PIP seems to have been positive so far, it's nice to hear :) 

    You appear to have gone through the process fairly quickly too given the long wait that others have endured lately. Fingers crossed your award letter arrives soon to confirm everything for you.
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  • Cartini
    Cartini Community member Posts: 1,108 Pioneering
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    Thank you Ross - yes, fingers crossed.
  • Cartini
    Cartini Community member Posts: 1,108 Pioneering
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    Hello everyone,

    I got my decision letter today and it confirms I`ve been "awarded" enhanced Daily Living but only 4 points for mobility.   I`m now considering a Mandatory Reconsideration because I believe I should have received 8 points in mobility for reasons I mentioned earlier (pain when stood up / walking).

    Andy
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,561 Disability Gamechanger
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    Hi @Cartini I'm sorry to hear the mobility points weren't the level you feel you should be awarded, it must be really disheartening.

    Turn2Us has a great overview of the MR process and the steps you'll need to take when challenging a PIP decision. I hope it's useful, and do let us know if we can support you any further, whether practically or with your mental wellbeing, as this is not an easy thing to get through.

    I hope the MR is more successful for you, let us know how you get on as and when.
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  • Cartini
    Cartini Community member Posts: 1,108 Pioneering
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    Hi Alex_Scope,

    Thank you very much. 

    I was a little surprised with the mobility decision, I was hoping the Decision Maker would have a different view and move me to 8 points.

    Thank you or the link, I`ll start putting my MR together and will let you know result, regardless of the outcome.

    Andy
  • poppy123456
    poppy123456 Community member Posts: 56,951 Disability Gamechanger
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    Cartini said:
    Hello everyone,

    I believe I should have received 8 points in mobility for reasons I mentioned earlier (pain when stood up / walking).

    Andy
    That in itself won’t get you a mobility award. How far can you actually walk, regularly and reliably? 
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • Cartini
    Cartini Community member Posts: 1,108 Pioneering
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    Hi Poppy123456,

    I`m in pain as soon as I stand up, the longer I stand / walk, the worse it gets.  It doesn`t matter how often or how far, I`m in pain.  Outside I can barely make 25m without having to stop and rest, and then it`s a recurring pattern of stop, rest, continue.  It`s "only" 170m round trip, but I couldn`t do it again within a couple of hours.

    I no longer go for walks because it`s too painful (I used to regularly go for a walk on Dartmoor).  Inside I can sit / lie down sooner which impacts domestic activities; around the house simple things (in my context) such as washing pots or hoovering can take up to an hour to complete (I live on my own).

    I`ve measured the distance to the shop which is 85m, and the distance  where I have to stop and rest, which is my main drive gate at 25m.  From then it`s a painful limp (right leg) stopping as and when I have to.

    All this was stated in the PIP2; the Decision Maker acknowledged that I stop, but seems to  disregarded it.

    I went to the Drs on Monday (4th April) and he believes, following a "check over" and in conjunction with my description, that I may now have stenosis which is affecting my right leg.  I`m now waiting for an MRI scan.

    Andy
  • flour
    flour Community member Posts: 73 Courageous
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    Hi Andy

    It sounds like it has gone well for you but not as well as could be hoped. Would you mind talking through your method as it sounds like you studied the forum and what had worked for other people first. 

    Whilst everyones experience is different it might help for other people starting their PIP application to hear what worked well for you?
    Remember that people come on to this forum who may be in a vulnerable state and kindness goes a long way. Be kind whenever possible. It is always possible.
  • Cartini
    Cartini Community member Posts: 1,108 Pioneering
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    Hi Flour,

    Firstly, I would say don`t fret over the questions.  They can seem daunting on the first time they are seen, but if you break the questions down to how you live they aren`t that bad.

    I`ve studied various threads on Scope and "Benefits and work".  I think what helped me is that, after much reading, printing, highlighting, keeping or ditching, I eventually just "brain dumped" everything that I feel.  It worked for Daily Living, but not for Mobility (probably because Mobility is a different kettle of fish to Daily Living).

    My application contained 54 typed pages which consisted of answers to the questions plus evidence.  My evidence was a mixture of MRI scan results, prescription screenshots, photos of dosette boxes and a diagram of my back showing where the pain starts and where it spreads as I stand and walk.  This approach worked because I had a paper based review (and how relieved was I of that).

    I have spondylosis and, after a visit to the Drs on the 4th April, quite possible spinal stenosis.  The latter diagnosis was long after my application for PIP.

    After reading everything I just sat down and thought:
    How does my spondylosis affect me in the bathroom? I need a grab bar to get in the over bath shower (and hold while I shower) (aid). I need to hold the sink when I clean my teeth (aid).

    How does it affect me on the toilet? I need a grab bar (aid) to help me sit and pull myself up when my spondylosis is giving me grief (most days).  Even when I need a wee, sometimes I have to sit down because of the pain.

    How does it affect me in the bedroom? I have to use a litter picker (aid) to pick my underwear and clothes off the floor when I get up in the morning (I`m a typical male, I just lob my clothes on the floor when I go to bed).  I also mentioned how long it takes me to "fish" my clothes off the floor and get dressed.

    How does it affect me in the kitchen? I have to sit down (aid) to prepare food; sometimes in the kitchen and sometimes at the dining room table.  The problem with sitting down is knife skills can become dangerous in that I have cut my fingers (safety).  Sitting down and trying to prepare food takes a lot longer than it would if I could stand and do it (reasonable time period).

    How am I affected by medication?  I use a dosette box (aid) to keep my tablets in.  I have several alarms on my phone (aid) to remind me to take my medication.

    I wear glasses, but sometimes I can`t read the really small writing on medication or food packets.  To counter this, I either use a magnifying glass (aid) or I photo the item on my phone and send it to my laptop where I expand it so that I can read (laptop is an aid in this example).  For the same reason, I no longer buy newspapers but read the online ones.  I can expand the screen so that the writing is large enough for me to read.

    The elements I`ve left out here (speaking etc) are because I don`t have problems with them.

    What I can say is... temporarily forget whatever challenge you have and concentrate on your daily life and how you live it. We all take cleaning teeth or wiping our bum for granted, but when you actually sit down and think how you do it, or what you need to do it, it takes on a different perspective.

    I hope this helps you flour (and anyone else reading it).  If you have any more questions, just ask - but I can only answer them from my context.

    Andy

  • flour
    flour Community member Posts: 73 Courageous
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    Hi Andy 

    That is a very interesting take, thank you.

    A lot of people who give advice when answer the PIP form suggest not answering the DWP's questions to the 5 bullet points on the 'b' questions. Which are

    Qb Tell us about the difficulties you have with [activity] and how you manage them.
    For each difficulty, please tell us:

    • how often you have this difficulty – tell us about both good and bad days
    • what the difficulty is
    • why you have it, or how it relates to your condition
    • any aids or adaptations you use, or help you get from another person
    • any help you feel you need but do not get

    And sometimes also then going on to address the 4 reliability points individually too (from the booklet).

    Did you attempt to answer these individually then or rather did you set this part to one side and instead simply focused on talking about yourself instead?
    Remember that people come on to this forum who may be in a vulnerable state and kindness goes a long way. Be kind whenever possible. It is always possible.
  • Cartini
    Cartini Community member Posts: 1,108 Pioneering
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    Hi Flour,

    That`s intersting about the "b`s"; I`ve not come across that myself.

    To put my situation into context for the following comments, I have:

    Lumbar & Cervical spondylosis (and awaiting confirmation of spinal stenosis), bilateral hearing loss, bilateral tinnitus (so wear bilateral hearing aids), asthma, obstructive lungs (gas trapping) and still suffer memory problems from a fractured skull and brain injury several years ago.

    For each activity I concentrated on myself but "wove" the 5 points into it;  I didn`t sit down and specifically think "right, I need to explain what the difficulty is".  This my opening paragraph for activity 6 - Washing and Bathing:

    "My condition affects my washing and bathing in that a constant combination of pain and tiredness means I`m not as motivated as I should be; having someone to prompt me to shower would be beneficial.  I no longer have baths because of safety fears, but I do have showers for which I use an aid. "

    I then elaborated on cleanliness from different points ranging from a sink wash, to cleaning up after soiling myself to lack of motivation (2.5 A4 pages worth).

    This is one paragraph about half way through the complete answer:

    "Because of the concentration required to prevent hurting myself in the shower, I find taking a shower to be quite tiring.  So much so that, even if I wanted to, I wouldn`t be able to take another shower straight away."

    And my closing paragraph incorporated the fact I use hearing aids:

    "An area of concern for me is that I have to take my hearing aids out to have a shower; I wouldn`t be able to hear if anyone had entered my home.  I am very security conscious, but my memory does let me down occasionally in that I forget to lock the doors; it doesn`t happen very often, but it does happen."

    Throughout my application, there were a number of areas that I made sure to comment on:

    Safety
    Tiredness
    Motivation
    Pain

    For the 4 reliablly points, I specifically mentioned "safety" and "not able to repeat" with the other two points being covered by implication.




  • Cartini
    Cartini Community member Posts: 1,108 Pioneering
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    @Cartini I’m a little bit taken aback that you used here and B&W and then put in 54 pages. It’s unlikely anyone here or there would have recommended that.

    @Username_removed Hello Mike, thank you for your comment. 
    I don`t recall anyone advising me to put in as much as I did, I think it`s down to my life in the Royal Navy.  I spent 20 years in the RN having to make sure that all the t`s were crossed and all the i`s were dotted.
    Whether it`s a good or bad thing, I can`t say, but I`m extremely thorough in everything I do (painfully so at times).  All I can think is that I went back into "RN mode" and just did a "cover everything braindump, warts and all".
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