Does anyone else have any experience of not having any up to date medical evidence? — Scope | Disability forum
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Does anyone else have any experience of not having any up to date medical evidence?

Lizbo
Lizbo Member Posts: 1 Listener
edited January 2019 in PIP, DLA, and AA
Type your messageI wish I'd known about this site a lot earlier!  It seems a great way of sharing experiences.
I'm a carer for my husband.  His problems started about 30 years ago when he had a slipped disc.  He had surgery for this.  Eighteen months later he had another slipped disc and another  operation.  A couple of years later, you've guessed it, another slipped disc but at that point they said further surgery would be  too risky.  Fast forward to 2013 when he did have further surgery which in the event didn't really help.  An MRI scan in 2015 showed that basically his spine is crumbling.  He received a lifetime award of DLA in 1996.  In 2016 he transferred to PIP and received the higher rate for mobility and, additionally, the standard rate for care. .  This meant I could now get Carers Allowance.   So far, so good.   He claimed ESA for the first time in 2017 and was not successful.  He got 0 points for mobility.  An MR failed and so we went to tribunal.  We were only in there for a couple of minutes.  They had already decided to put him in the support group.  Even the DWP rep said it shouldn't have gone so far.  Fast forward again to now.  His face to face reassessment is tomorrow.  His condition hasn't changed at all but he's got to the end of the road as far as treatment is concerned.  He can't have any more surgery.  (They were reluctant to do the last one, it was a last resort).   This means that we don't have any up to date medical evidence and this does bother me a bit.  Does anyone else have any experience of not having any up to date medical evidence?  Oh, and by the way, we could have asked our GP for a letter but they charge and the DWP letter said not to pay for any medical letters.
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Comments

  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
    Hi @Lizbo, and a warm welcome to the community!

    Thanks for sharing this with us, and I'm so sorry to hear about your husband's experiences. It sounds like it's been a difficult process for you both. How did the face to face assessment go?
  • stree
    stree Member Posts: 41 Courageous
    Lizbo,

    I have that problem too, lots of appointment letters but none with any mention of my condition and how it affects me. Appointment letters themselves are not accepted as evidence by DWP-PIP.

    My condition has worsened since I was last assessed and I am considering notifying a change of circumstance which would trigger a fresh assessment,but all my correspondence is in the form of appointment letters, so what I am doing is contacting the agencies that monitor me and asking for a support letter for my PIP pack to send with assessment sheets. Two done so far today.
    Also a daily diary of how I am affected and in what ways, this is a very good way of explaining your circumstances.
    The main thing to remember is (for PIP) to state how you are affected, what gives you problems, how you are limited, what makes you breathless or gives you pain and how it prevents you doing things. Keeping a diary may make you aware of things that you have just become used to doing or not doing,taking a rest halfway up the stairs, taking an hour to get dressed or undressed, the aids you use around the house, the jobs you have to ask others to do.
    A diary helps focus these things.
    I could just as easily send links, but I think it is important that we talk to each other to help share problems and find solutions togather.
  • JennyF
    JennyF Member Posts: 14 Connected
    Hello
    Sorry to hear about the stressful time you've been having. I haven't got much advice to offer, but I did want to say that you're not on your own. We've had a similar problem because my daughter suffered a brain injury as a toddler that was not diagnosed until she was in her twenties, though it was apparent from her late primary school years that there was something wrong. Because there was nothing to be done, the medical profession were not interested in her, and we had a lack of the usual reports or consultants to refer DWP to.  In spite of her various difficulties, she was refused ESA after an assessment with a doctor who didn't believe her and was obviously being paid to turn people down.  In the end, we found the right charity - in our case Headway - and they were very supportive, including going with my daughter to a new ESA assessment. Which was successful, so maybe that is the only advice I can offer - try to find out if there is a  the charity that deals with back problems - maybe they can help.   
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
    Welcome to the community, @stree!
  • [Deleted User]
    [Deleted User] Posts: 172 Pioneering
    The user and all related content has been deleted.
  • stree
    stree Member Posts: 41 Courageous
    Also very important!
    Take copies of all documentation, and before you do, ensure that your full name, Date of Birth and national insurance number are at the top of every page.

    Take your copies when going to ESA or PIP assessments, and refer to them in the assessment if needed, this is perfectly OK to do.
    Always keep master copies at home safe, or even better the original documents.
  • Yadnad
    Yadnad Posts: 2,856 Connected
    stree said:
    Lizbo,

    I have that problem too, lots of appointment letters but none with any mention of my condition and how it affects me. Appointment letters themselves are not accepted as evidence by DWP-PIP.

    My condition has worsened since I was last assessed and I am considering notifying a change of circumstance which would trigger a fresh assessment,but all my correspondence is in the form of appointment letters, so what I am doing is contacting the agencies that monitor me and asking for a support letter for my PIP pack to send with assessment sheets. Two done so far today.
    Also a daily diary of how I am affected and in what ways, this is a very good way of explaining your circumstances.
    The main thing to remember is (for PIP) to state how you are affected, what gives you problems, how you are limited, what makes you breathless or gives you pain and how it prevents you doing things. Keeping a diary may make you aware of things that you have just become used to doing or not doing,taking a rest halfway up the stairs, taking an hour to get dressed or undressed, the aids you use around the house, the jobs you have to ask others to do.
    A diary helps focus these things.
    I could just as easily send links, but I think it is important that we talk to each other to help share problems and find solutions togather.
    All good advice but one thing is missing - where is the confirmatory and independent evidence that supports all of that?
    Anybody can write anything - should they be believed from the outset just because they wrote it?
     
  • poppy123456
    poppy123456 Member Posts: 31,135 Disability Gamechanger
    Yadnad said:

    All good advice but one thing is missing - where is the confirmatory and independent evidence that supports all of that?
    Anybody can write anything - should they be believed from the outset just because they wrote it?
     
    I believe this has been covered many times on here. No need to go through it all again..
  • stree
    stree Member Posts: 41 Courageous
    Yadnad.
    I may be new here but I have seen your post re this topic of April "18 and I agree with poppy123456 that this is not something to cover here.
    Any aspect that would be helpful or useful in this thead is welcome, but I see no value in sidetracking a genuine enquiry with moral philosophising.
  • Yadnad
    Yadnad Posts: 2,856 Connected
    stree said:
    Yadnad.
    I may be new here but I have seen your post re this topic of April "18 and I agree with poppy123456 that this is not something to cover here.
    Any aspect that would be helpful or useful in this thead is welcome, but I see no value in sidetracking a genuine enquiry with moral philosophising.
    It's not. Post after post on here generally tells people that they need to supply evidence, not to support a diagnosis but to support the fact that the descriptors claimed are actually the truth.

    I have mentioned in another of my posts this morning what happened at my three assessments when I claimed for (a) an aid supplied by Social Services (a bath chair) so as for me to get in and out of the bath. and (b) that I needed help to get in and out of the bath (off the chair).

    The assessor carried out MSE each time commenting on the strength and flexibility of my legs and arms which resulted in them refusing points for the bath chair. Despite this equipment being supplied by Social Services it was determined that it was not for need but for choice.

    I had to supply evidence to support my argument that the descriptors applied to me (spinal unit at hospital and Social Services). The DWP then relented and agreed that it wasn't supplied out of choice but out of need.


  • stree
    stree Member Posts: 41 Courageous
    I apologise, I misunderstood.
    I agree, it is a fraught area, how to properly explain without leaving oneself open to appearing more able than is the case and the temptation to over emphasise your plight.
  • Anne54
    Anne54 Member Posts: 3 Listener
    Hi, Yes I have had this problem too.  My condition is arthritis and heart failure. It must be over 10 years since I was sent for xrays for arthritis.  The doctors say it isn't necessary - they know ive got arthritis!  But I feel that the assessors think less of you if you haven't got a pile of extra letters etc, its like without extra proof they are just taking our word for it. From my experience they automatically don't believe us. It seems pointless us going if they are assuming we are liars anyway.  I still can't get my head round being refused PIP when I have a letter from DWP about 5 years ago to say I was entitled to DLA indefinitely!  
  • Yadnad
    Yadnad Posts: 2,856 Connected
    edited February 2019
    Anne54 said:
    Hi, Yes I have had this problem too.  My condition is arthritis and heart failure. It must be over 10 years since I was sent for xrays for arthritis.  The doctors say it isn't necessary - they know ive got arthritis!  But I feel that the assessors think less of you if you haven't got a pile of extra letters etc, its like without extra proof they are just taking our word for it. From my experience they automatically don't believe us. It seems pointless us going if they are assuming we are liars anyway.  I still can't get my head round being refused PIP when I have a letter from DWP about 5 years ago to say I was entitled to DLA indefinitely!  
    It's not just with DLA. I have had 3 PIP assessments and each one ended up with 0 points. Yet with the evidence I sent them they relented twice and changed the award to Enhanced Care & Mobility.
    So how you can go from 0 points to Enhanced Care & Mobility then back to 0 points and back again to Enhanced Care & Mobility then finally to 0 points all in the space of 5 years!!

    I had some fantastic evidence - two reports. One was for Mobility and the other for Care. These were factual reports that laid out what I cannot do and can do giving reasons. These reports were dated 2011 and 2012.
    However in late 2017 the DWP wrote to me with the decision saying that they were unable to use the reports as they were too old and not relevant to how I am now. 
  • [Deleted User]
    [Deleted User] Posts: 172 Pioneering
    The user and all related content has been deleted.
  • Bungalow
    Bungalow Member Posts: 43 Courageous
    I have just requested my medical file from the hospital for 2004 onwards, they needed Passport and Driving licence . Waiting for them to come through. I thought I would have to pay but there seems to be a new regulation about obtaining your medical files from a hospital from 2018 I don't have to pay for them . I don't know if it's the same across the country though.
  • Yadnad
    Yadnad Posts: 2,856 Connected
    They can make up anything ... messed up system. Bribed charlatan so called medics ....who could make this up ... the tory party
    What on earth has the Tory party got to do with this?
    It was Labour under Blair that dreamed up ESA which they hailed as a success  and put the wheels in motion for PIP to replace DLA. The Tories just picked it up from where Labour had left it and brought PIP to the table to replicate ESA being such a success. 
  • [Deleted User]
    [Deleted User] Posts: 172 Pioneering
    edited February 2019
    The user and all related content has been deleted.
  • Bungalow
    Bungalow Member Posts: 43 Courageous
    edited February 2019
    Think you will find PIP was introduced in 2013 by the Conservative-Liberal Democrat Coalition .

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