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How do you evidence PIP if you have no specialist input

griff11griff11 Member Posts: 83 Courageous
I'm 57 and when I was 15 I was hit by a car outside school.  The car hit me centre of back with such force my shoes came off and travelled to nearby field and my head bounced on windscreen.  At the time they were more concerned with my head though they x-rayed my body.  Within a few months I had back pain but GP put down to growing pains.  Over the years the back pain, stiffness, inability to hold anything in my arms due to pain in my back was written off by GPs as I was young and to just deal with it.

After having my child age 30 the back issue got much worse.  During labour they attempted an epidural for emergency c-section but failed as no space between vertebrae to get needle in.  By the time my daughter was 1 I had two episodes of severe muscle spasms in my back that lasted weeks despite me paying to see a physiotherapist as waiting list for NHS too long.  They couldn't realise muscle spasm so just had to cope with painkillers and wait for it to release.  I did have NHS physio over next 15 years via GP but root cause never found and I endured episodes of severe pain and weeks of limited mobility.  One physio told me to stop working as I worked part time in a desk job and she said the sitting was too bad for my back.  I carried on.  Then 10 years ago a physio gave me two weekly sessions of traction for 8 weeks and it was like a miracle and the pain in my back improved dramatically as did my range of movements.  No longer did I have to struggle to put on my knickers in the morning, contort to get shoes off, I went back to work full time and buoyed by this I took up gentle Pilates to keep my spine mobile.  I had the odd flare up but the last major one was 2018 when I thought I had severe sciatica and told by nurse practitioner (couldn't see a GP) to just take naproxen.  While this lessened the pain I developed dropped foot  so I paid to see a physio urgently as I had fallen walking to shops and ended up in A&E with a cut to my forehead, nose, chin, hands and  a sprained ankle.  I fell just because surface of car park uneven and my dropped foot made walking tricky.  Physio discovered I had a muscle spasm in the middle of my back and my pelvis was tilted.  Put pelvis in place and did massage to release spasm but not budging.  Gave me exercises to do multiple times a day for 2 weeks before returning for another session as she said a session the next week pointless as it wasn't releasing quickly.  Dropped foot resolved and she said just call her if it relapsed.  

I took early retirement from work  2 years ago to be a carer for my hubby after he had serious accident 3 years ago and I was struggling to cope working full time and caring for him especially as he needed more surgery and I was also caring for my daughter who has MH condition.

Now just my hubby home and I'm careful with my back but dear lord it's playing up so badly for last 4 months.  I couldn't do my Pilates for 6 weeks as i just couldn't move, not even raise my arms without severe pain but started by 3 weeks ago as teacher is very good and tells us to do what we can and it's via zoom so I can just sit out certain moves.  I love my pliates class as geared towards older people - I'm one of the youngest and most exercises are lying flat on floor!  My only contact with my GP is online via MyGP.  I've just had a new prescription for naproxen.  I try not to take them as over the years I've developed a tolerance to pain e.g. when I had C-section I needed no painkillers after surgery as I had no pain and 6 years ago when I had surgery for Breast cancer again I needed no pain relief once discharged from hospital (I remember waking from surgery in recovery and saying "pain" and they asked me on scale of 1-3 how bad and it was 3 so they gave me something).  The pain now is constant again.  I want more traction but told not really suitable for me due to my age now!  So I think I'm stuck with the pain.  I mowed lawn on Saturday - no pushing involved as self propelled, Sunday I was in tears with pain lying on floor.  I've been struggling to get out of car as I stiffen up badly now if not moving.  I have to prepare myself to rise up off sofa, bed etc.  I walk with limp for about 5 mintues until my back loosens up.    Getting my undies on is again an issue!!!

I've adapted my life around my back as It's been bad over 40 years.  I've encountered the rolling eyes from Doctors when I've been with issues.  I had one physio who laughed in a sarcastic way when I had to do run through of my issue and told her my hubby said my spine was pulled out of place and looked like a snake.  She was really off with me whole session even until she found out I was still in work not off sick.  She thought I was trying to pull a sicky as I had a young child!  She then told me one of my hips lower significantly, spine pulled to one side due to spasms etc.  but the reaction I had has lasted with me so I self manage, pay privately for physio now and just get painkillers when needed.  I know I look an in control, get on with it person when dealing with medical professionals.  When I was told I had breast cancer the surgeon said "you are taking this very matter of factly" - I bawled my eyes out at home.  

So now here I am and I know the GP will just say it's age related deterioration but I'm struggling.  My hubby has spinal injury so between us we are bloody useless now to move/carry things.  Emtyhing washing machine with my poundshop grabber is fun!! Bit risky to try it on dishwasher!!  We've just ordered a new car again as the car I bought 3 years ago to make hubby's life easier after his accident doesn't have things that we need.  We now need automatic, need auto boot closer - we can open it but we've had to put strap on to pull down as I  think we have heaviest boot in the world!  

I feel as though I've not had my back issues taken seriously as too young when it started and now I'm nearing sixty they will say just age related.  I have to keep moving as I have T2 diabetes so need to keep my weight down.  I know I need to push things with my GP to get treatment but this just don't take me seriously as I look well.  When I went to see GP 5 years ago as I had signs of diabetes - thirst toilet, weight loss she reluctantly gave me form for blood test as she said I looked too well!! Next day she rung me as my blood glucose was averaging 18 over past 3 months!!



Replies

  • Girl_No1Girl_No1 Member Posts: 105 Courageous
    @griff11 you certainly seem to have a lot to contend with between your own difficulties plus those of your husband.

    In terms of applying for, and being awarded, PIP without evidence, it can be done - I had no reports or letters to include with my application as, like you, my conditions are basically lifelong and ongoing.

    I did what everyone on this forum advises:  I gave a couple of examples of how my conditions affect me and what happened the last couple of times I attempted to do tasks that are covered by the PIP descriptors.

    After telephone assessment, my outcome was standard daily living.  I did not believe that fully reflected my needs and submitted a MR, again with no evidence other than my repeat prescription list.  In fact, one of the issues I argued against in the MR was that of the assessor's interpretation of my medication!  Outcome of MR - daily living increased to enhanced, and standard mobility awarded!

    I would say, do not let a lack of evidence prevent you applying - just be honest regarding your conditions, their impact on your life and how they affect your ability to undertake the tasks defined within the PIP descriptors.

    Good luck with your application.  :) 
  • woodbinewoodbine Community Co-Production Group Posts: 4,512 Disability Gamechanger
    All I would add to the excellent advice above would be to have a read of the descriptors and see if/where you would/might score points:

    https://www.citizensadvice.org.uk/Global/Migrated_Documents/adviceguide/pip-9-table-of-activities-descriptors-and-points.pdf
    "Putting a child into care, isn't caring for a child" (T.Rhattigan)
  • mikehughescqmikehughescq Member Posts: 6,628 Disability Gamechanger
    There is no “lack of evidence” here. There is a “lack of specialist input” and an erroneous assumption that it’s relevant. But so what. That is easily countered with anecdotal evidence. The reality is that even cases with so called “specialist input” find that HCPs routinely ignore that. 
  • chiariedschiarieds Community Co-Production Group Posts: 9,198 Disability Gamechanger
    Hi @griff11 - I applied for PIP before joining this forum. My GP said he would write a supportive letter, which mentioned the physical problems he could see, namely the irreversible damage to my right arm. I had no other evidence other than my own testimony. Whether my GP's letter helped or not I don't know, but, as above, it's your own evidence that carries the most impact, &, as I've since learnt (from this forum), about 50% of claims are successful with no medical evidence whatsoever.
    I would just like to add, tho I haven't had your injury, I have suffered lower back pain since being a teenager.....this was also put down to 'growing pains.' I saw an osteopath (not that I was keen to do so), but agreed as he was also a Dr. He said he'd never seen anyone's back muscles in so much spasm. Many years later my GP's didn't know what was going on, but, perhaps because I had qualified as a physio, never had the temerity to not at least say they believed me. I researched & found my family likely had a genetic disorder, tho initially some consultants disagreed as my muscle strength was near normal (did they think a former physio wouldn't exercise)? Just wanted to say, I'm pleased for the physios that have helped, but saddened by the one that was initially so dismissive.....there's no excuse.
    You're doing great, & realise the importance of exercise; believe in yourself....you know your problems, so don't minimise them yourself by saying your GP might say they're age-related; you may look well, as do I, & we have put mechanisms into place to (usually) deal with pain, but give your GP a chance to look into your problems further. You deserve that. My best wishes. :)

  • littleacornlittleacorn Member Posts: 198 Pioneering
    I have had no medical input apart from my GP for as many years as I can remember. I too have a congenital progressive condition and had to really stretch myself to understand and complete my PIP form. I used what old medical letters I had which I got from my records at the GP's. My GP did a letter but it really didnt say much. I used each descripter and described how I do this word for word. Giving many examples. I used diary sheets containing my routine and how long each task takes. I had supporting letter from my wife and a friend I have known for many years. In all I think I copied and sent in about 50 sheets of paper. I sent this all recorded delivery. 
  • griff11griff11 Member Posts: 83 Courageous
    Thank you all for your responses .  I think I'm finding excuses not to apply as it drags me down to put to paper the things I struggle with.  I completed my husbands form with no issue but he found the process upsetting and it took a month to do.  I understand why now as it focuses on what you can't do and we've always tried to be positive & focus on what we can do .  

    I'm still not sure I can face doing the form as reading through descriptors last night has triggered me to paint a wall in spare bedroom to prove to myself I can !! We've paid decorators to do our decorating for years as in the past hubby was working full time in demanding jobs and I had started & not finished too many walls as pain got too bad and he was forced to spend his  downtime emulsioning which he hates !!!  But no I now have a wall full of samples !  Curtains down , carpet covered, masking tape up  , cracked filled and hubby annoyed asking why I'm doing this !  I have to finish by Sunday as new blinds coming .  How hard can 2 coats of paint be.  
  • Girl_No1Girl_No1 Member Posts: 105 Courageous
    @griff11 Listen, do not beat yourself up or attempt to prove you are more able than you actually are. 

    These are traps into which all people with limitations fall, usually at a direct cost to our wellbeing. 

    If you feel, within yourself, you meet the criteria please apply.  It is difficult, and it is daunting.  No-one denies that facing up to where we are, in terms of being able to undertake tasks others can do without difficulty/extreme effort, is easy and without cost to our self-esteem etc.  

    The reality we need to keep in the forefront of our minds is: there is absolutely no shame in being in that situation.  It is not our fault we find ourselves in these circumstances. 

    Again, there is no doubt each and every one of us would trade our difficulties, in a nanosecond, to be able to function as others do.  Every one of us!  Sadly, that trade is neither possible nor realistic.  We need to deal with the reality, and that means being brave/having strength enough to expose our vulnerabilities to others (the DWP) who can help us to cope!  

    Use this site, and the experience we have, to ensure your application accurately reflects your situation and, if necessary, to draw stength if you do not initially receive the award your deserve!!

    Best regards.  


  • mikehughescqmikehughescq Member Posts: 6,628 Disability Gamechanger
    It's entirely understandable that having to document negatives can be unhelpful and difficult. That suggests you need someone else to do the form filling so you can spill it all out and then forget it whilst they can do the writing. 

    Https://advicelocal.uk 
  • littleacornlittleacorn Member Posts: 198 Pioneering
    As a profession I help others complete these forms but as an individual completing them for myself is a completely different matter. My mental health really suffered but I was determined not to give up. Do you already have the form or arw you thinking about apply for it? I would suggest if you havent aready got the form I would start to think about the questions now and jot down you answers in a note book. I dont think this writing on the directly is a good idea because you always remember something to add and there is no spave. If you are completing the form on the computer making changes is much easier. The only info I wrote on the form were details that wont change eg name date of birth. The rest I used as additional sheets of paper. It is also easier to leave and go back to as it took me many hours to complete in short bursts. Dont give up! If you have the form all ready then I know there is a timescale to return it but not sure what happens if you dont meet the timescale and ask for another form say in a months time when you habe given yourself more time to prepare. Dont give up it will be worth it in the end. Please keep copies of everything you send.
  • chiariedschiarieds Community Co-Production Group Posts: 9,198 Disability Gamechanger
    Altho you've already seen it with your husband's PIP claim @griff11 - here's a copy as a reminder. Btw, by understanding exercise, I didn't mean painting a wall, so hope this link doesn't get you attempting another, or even worse, the ceiling! Here's the PIP2 form: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/713118/pip2-how-your-disability-affects-you-form.pdf      So, you can, should you wish, prepare a little beforehand. Once you receive the form, you have 1 month within which to return the form, but you can ring the DWP to ask for an extension, & they will give you an additional 2 weeks regardless.
    It's always wise to keep a copy of everything you send, but you don't need to send it recorded delivery (as this is only signed for at the DWP sorting depot, not actually received by the DWP), rather obtain a free Certificate of Posting' from your Post Office.

  • mikehughescqmikehughescq Member Posts: 6,628 Disability Gamechanger
    I know there is a timescale to return it but not sure what happens if you dont meet the timescale and ask for another form say in a months time when you habe given yourself more time to prepare.
    The answer to that is that you potentially lose a considerable amount of money.
  • griff11griff11 Member Posts: 83 Courageous
    Ok I've done it! I rang today and had link to form by email.  I spent about 3 hours completing it.  I found it difficult to answer the question on mobility about how far I can walk.  Well some days I can walk a long way but every day  the first 50m the hardest as I'm stiff, a bit stooped,  limpy & slow.  As I loosen up it gets easier hopefully but not always and I know I'm slow . Thinking about my walking I realised I haven't attempted a long walk since Feb this year.  Just not up to it.  Need to push myself.
    I have no sense of distance but my hubby showed me how to measure distance on google map.  The walk we usually do is in the country park at rear of our house.  I know the last time we did it that it took us 3 hours to walk what I now know is 3 miles .  I know it took us 3 hours as my daughter texted us to ask if were ok.   I thought we'd walked further as we'd been out so long and were so tired when we got home!!  I feel disappointed about this as google suggested I should cover 3 miles in an hour.  I know a few years ago I would walk home from work once a week.  Well I'd walk  the first mile and half along sea front.  It used to take me 50 minutes.  I couldn't face the last mile home as it was off sea front, I was tired, achey etc so used to ring hubby for a lift for last bit home!
  • mikehughescqmikehughescq Member Posts: 6,628 Disability Gamechanger
    The issue is not how far you can walk. It’s how far you can walk reliably. However, if you can walk 3 miles then you have something of an uphill battle to make any case for any rate of the mobility component. See https://pipinfo.net/activities/moving-around
  • chiariedschiarieds Community Co-Production Group Posts: 9,198 Disability Gamechanger
    Great you've completed the PIP claim form. As far as mobility goes, you've answered honestly, but, as Mike says, it's difficult to see how you might qualify for the mobility component given what you've said here.
  • griff11griff11 Member Posts: 83 Courageous
    I answered honestly based on this giving unembellished account of my mobility.
    https://www.disabilityrightsuk.org/news/2016/july/pip-walking-through-pain-not-walking-acceptable-standard

    As I said in my previous post I've not done a long walk since February as I haven't been up to it and I did say this on form.  My back pain and mobility has got worse this year hence I couldn't do my Pilates for 6 weeks even though the movements are lying down and and I know I have to keep moving as the pilates I do is about stretching and mobilising all joints, including fingers, wrists, toes etc as it's essential as you age as it strengthens your bones and I've broken my toes a few times over the years along with my foot and according to A&E consultant who reviewed my foot before removing cast ( apparently it was an unusual fracture so he was interested in how it happened ) I had an old healed fracture to my ankle and some ligament damage!!  Fallen loads of times over the years and "sprained my ankle" but obviously it was always just a sprain.  I broke my foot falling out of shower and left my foot in shower! Strangely it wasn't painful it was just the angle my foot was at that I knew there was risk of damage hence going for X ray.  

     Not doing the pilates was affecting my mobility but I just couldn't push through the pain at the time.   My issue with walking is getting going.  I'm stiff but I have to push through and keep going.  I have diabetes and exercise is essential to manage my blood glucose and just sitting down is not an option which is why I know I have to get back walking.  I've found my walking poles, cleaned up my walking boots and Monday's plan is short walk to try to build up again.  Can't just sit around.  .  I also included that 3 years ago when I had dropped foot I still pushed myself to walk even though it resulted in a fall & A&E visit as this demonstrates my determination to push myself when struggling.  
  • mikehughescqmikehughescq Member Posts: 6,628 Disability Gamechanger
    And so your current out of doors walking distance for the past three months is…
  • griff11griff11 Member Posts: 83 Courageous
    Car to Tesco and quick shop. Tbh I'm horrified how long it's been !  I've no plans today and keep thinking I should try but just spent an hour in bath to sooth my aching and now Im washed out.  I think the poor sleep is dragging me down but I know I need fresh air.  
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