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DLA transition to PIP failed

youngwill Member Posts: 7 Listener
Hi All, I'm hoping someone has a similar experience and can offer advice to what I've already done? 
I've had Tonic - Clonic epilepsy, or Mesial Temporal Sclerosis for 48 years and 25 years ago, in 1992 I was first awarded DLA (Middle care component and Low mobility rates). 
On 8th June 2016 I had my face to face ATOS assessment for PIP but it's been anything BUT a smooth transition. I was awarded ZERO points? 
I immediately requested a 'Mandatory Reconsideration' and the DWP report, dated 12th July '16 was virtually a 'copy & paste' exercise. The same letter told me that my DLA would cease, which it did, on 9th August '16.
I attended  my local CAB for advice and support to attend a HMCT appeal. Because I was over the 30 days limit I was advised I had 13 months to appeal under special circumstances. There was no way I could obtain copies of my medical records, via 'Subject Access Request' under the Data Protection Act, as they can take up to 45 days to receive. Apart from my failure to provide medical evidence at the face to face assessment, there are too many inaccuracies in the report. I felt it was damned offensive for a nurse to describe me showing 'NO cognitive impairment'. Of course I wouldn't show any impairment, until I seizure. Doctors and Neurologists have never been able to control my seizures. My local hospital Trust seemed reluctant to even forward the form for 'Access to Medical Records 1990' and I eventually applied to King's College, London for more comprehensive notes where I have received most Neurological treatment between 1987 - 2000.
It was in '87 that my locum Neurologist first referred me to London for Lobectomy surgery and the huge waiting list meant I never received CT, MRI scans & Video Telemetry tests until August 1995. My next appointment, for the results was delayed until January 2000 because the surgeon admitted, and apologised for losing my file when the hospital had had a new extension built and they were lost in transit. 
Regardless, when he told my brother and I that surgery would only hold a 70/30 chance of success at clearing the epilepsy up I declined. Therefore, the HMCTS will not see any medical evidence between 2000, except my GP's letter dated 14th May 2017, where he states that my epilepsy has remained uncontrolled.
I rang HMCTS last Friday 26th May to see how much longer my appeal date would be. I was told they received my appeal on 10th March, eleven weeks ago, with a waiting list of 15-16 weeks. So my hearing should be in about a month's time?
I'm hoping the appeal panel will award me something to replace the DLA firstly, that it was my oversight for not supplying medical evidence at the ATOS assessment, and secondly, the fact that I had received DLA for 25 years should stand me in good stead?
From researching what other disabled people have experienced, I've also felt annoyed, not a case of sour grapes, that some have been awarded high mobility PIP for just anxiety and depression, needing a carer or companion when venturing outside their home. I don't expect any mobility award because epilepsy prevents me from holding a driving license, so how would they consider an award?
Kind regards, Will


  • wildlife
    wildlife Member Posts: 1,293 Pioneering
     @youngwill, I can't really advise you about the Tribunal as I haven't been to one but concerning your comment about mobility. You should surely be eligible for mobility as needing someone with you when out and about in case you have a seizure, unless you do go out alone and have told them that. About people getting high rate mobility for anxiety and depression, this should not happen as I was turned down for that, but eventually I met the criteria by having a long term mental health condition with specialist input and treatment which is more like the wording of the planning a journey criteria.
  • Nystagmite
    Nystagmite Member Posts: 596 Pioneering
    The criteria for DLA low mobility and the first part of mobility for PIP are actually same - needing someone outside to supervise you in unfamiliar places. Seems utterly bizarre that you got turned down. (but similar happened to me; but I did win with completely different medical problems)

    The problem with PIP is the criteria is completely different. And they, from experience, base it on that 1 hour (that's how long it was for me) assessment you have.
  • youngwill
    youngwill Member Posts: 7 Listener
    Hi Wildlife, thanks for your reply. I think PIP has been around long enough for many of us to judge that it's only a change in benefit name, and a tightening of criteria, to be found eligible, as a DWP cost cutting exercise.
    I forgot to mention in my original post that a friend drove me to the ATOS centre, but he stayed in the car whilst I was interviewed. Three years previously my brother drove me to the ESA assessment, where I was placed in the 'support group', which should also be additional evidence to my previous long time award of DLA?
    Another cop out by the DWP & ATOS, besides claimants having to provide/supply their own medical evidence, was that DWP/ATOS would not consider looking at an individual's other benefit claims.
    Because of epilepsy I chose not to have children and I was widowed 12 years ago after my late partner lost her life to medical negligence. So I really do rely upon my brother quite heavily. I didn't make it clear to ATOS that I only leave the house every Saturday evening to do my shopping at Tesco's accompanied by my brother and Sister in Law, always in their car.
    Epilepsy is one condition that Dame Tanni Grey-Thompson has described in a House of Lords debate on PIP, as an 'invisible' disability. But we still can't get it through to DWP, or ATOS assessors how it disrupts our everyday living compared to what they're used to.
    Something else that I need to raise at the appeal, if I'm given the chance, is our thought processes are challenged by the anticonvulsants we take, that slows our thinking time, and loss of concentration when we're fired a barrage of questions.
    I will be grateful for when this gets concluded, as it's hard to think where one year has passed by so quickly.
  • Matilda
    Matilda Member Posts: 2,590 Disability Gamechanger

    Being unable to drive won't prevent you being eligible for PIP mobility (on the contrary - see below!).  Non-drivers can use their mobility award to take taxis.  You are awarded mobility element according to how far you can walk outdoors (and if applicable how well you can find your way around).  So, for getting around, it's 12 points for 0-20 metres (enhanced rated); 10 points for 20-50 metres and 8 points for 50-200 metres (both standard rate).

    Disability Rights website has a good section on PIP.  I recommend it.

    Two weeks ago I won my PIP tribunal appeal - award increased from standard rate to enhanced rate both elements.  Below is what I wrote on my own thread about my tribunal experience hearing:

    "Tips?   Have your wits about you and be prepared for a grilling; and have thorough medical evidence even if it's not recent.

    The only medical evidence I had was the DWP doctor's report and my GP's report from 1998 (both very thorough) when I was awarded DLA highest rates both components indefinitely.

    The other two tribunal members weren't too bad - but the doctor asked some probing questions.  Asked for how long I could walk (time).  The Atos assessor asked that, too.  Although of course PIP points are supposed to be awarded for distance, not time (or so I thought).

    Doc also asked how did I know I could only walk 20 yards?  Had I ever measured it?  I replied no, it was an estimate based on experience of distances.

    The judge, doctor (as well as the Atos assessor) all seemed to think that ability to drive indicates a low level of disability.  Which is nonsense.  What's the point of Motability, then?  And many disabled people would be housebound without a car.  

    I only take two, maybe three, round trips of 12 miles or less a week; I find driving long distances tiring.  I wouldn't advise any claimant to state that they do a lot of driving, especially longer distances."

  • youngwill
    youngwill Member Posts: 7 Listener
    Thanks Matilda. Mobility & Distance is one of the biggest dilemmas, or anomalies for some of us.
    One day I can rise from a seated position and walk perfectly, indefinitely, the next occasion can be an hour later, I can rise from a chair and immediately fall to the ground and go into seizure. The 50% rule is also too ambiguous. The many, many times I've stepped off of the pavement and never reached the other side of the road is unaccountable.
    Having been for 2 assessments, for ESA that was no problem, but for PIP the assessor was a completely different woman, with a completely different outcome. Now we know that assessors are given bonuses we can suspect why?
    On the question of distance, I wonder how assessors would judge my distance when I go AWOL during a seizure? At times like this, one wonders whether I should have cctv installed at home to record when I've gone into seizure, while on the phone in the front room, and regained consciousness, though confused, in the kitchen or bedroom? One of these occasions resulted with me answering a knock at my front door to a paramedic as, unbeknown to me, a friend I was on the phone to, had dialled 999 on her mobile because my phone being off the hook wouldn't allow her to use her landline. For this reason I made a Subject Access Request to my Ambulance service and have obtained a record of 14 times an ambulance has attended me, either at home, or in public. 
    I reckon quite a few of us have led a colourful life, and got up to a 1001 totally unbelievable escapades that, if compiled into a book, would be a number one bestseller?
  • Nystagmite
    Nystagmite Member Posts: 596 Pioneering
    To get PIP, it has to just be reasonable. For example, (I'm just making this up here - I don't know your actual situation) it could be reasonable to suggest that because your epilepsy is so unpredictable, that it's reasonable for you to need supervision all the time when cooking because you may injure yourself. That would get you 4 points. You need 8 for standard PIP.

    I take anti convulsant medication for an unrelated condition which has left me with permanent medical problems which have been backed up with proof. That was all ignored. Apparently, they don't cause me hearing difficulties, tiredness, memory problems or any other difficulties I have.
  • Matilda
    Matilda Member Posts: 2,590 Disability Gamechanger

    You might also need supervision to convey food to your mouth (you might choke if you had a seizure while eating unsupervised) and supervision to bathe and dress in case of seizures where you could injure yourself.

    You could phone the Scope Helpline who might be able to point you toward local sources of advice.

    Also, I assume that there must be websites for epilepsy sufferers, who might have advice about claiming PIP.
  • youngwill
    youngwill Member Posts: 7 Listener
    The criteria for DLA low mobility and the first part of mobility for PIP are actually same - needing someone outside to supervise you in unfamiliar places. Seems utterly bizarre that you got turned down. (but similar happened to me; but I did win with completely different medical problems)

    The problem with PIP is the criteria is completely different. And they, from experience, base it on that 1 hour (that's how long it was for me) assessment you have.
    You're absolutely right Nystagmite, as I mentioned to wildlife, that DWP only tightened the criteria for eligibility as a cost cutting exercise. Putting it bluntly, Welfare cuts and capping have been brought about to fund MP's more expenses and 10% salary increase.


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