PIP, DLA and AA
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DLA to PIP issues

templartemplar Member Posts: 11 Listener
edited May 2018 in PIP, DLA and AA

Greetings Ladies and Gentlemen,

Back when I was 16 years old I had a rather negative experience in a storm that was battering the UK at the time.  A few days later I went to go out and found that I could not as any attempt to do so would provoke a most disagreeable anxiety and panic.  That was 28 years ago, and despite now being able to travel up to 150-200 metres from my house am still pretty much what you could class as mentally disabled as I cannot reach a hospital or any suitable place of potential employment.

Recently I received the expected letter from the Department of Work and Pensions informing me that my DLA is coming to an end and inviting me to claim for Personal Independence Payment.  I did so, and a few weeks later had my home assessment.  A few weeks beyond that and I received a reply telling me that I did not qualify for any PIP rate whatsoever.  Back in the mid 90's a doctor was sent to assess whether I qualified for DLA and he concluded that I should receive the lower component which was about £20 a week, so I was surprised that the DWP would replace a benefit that takes cognisance of my disability with one that does not.  I wrote for a mandatory reconsideration notice that resulted in the same decision.

I honestly do not contest the DWP's decision on the physical mobility factor, and the score I received on the "Daily Living" part regarding my ability to dress myself, operate tools etc I have no quarrel with.  It was the "Mobility" part that I took exception to.  I received 0 points for Planning and following a journey.  I mean, I can plan, but follow???  For the moving around bit I received 0 points with I can stand and move for than 200 metres either aided or unaided.  I emphatically stated to my assessor that I cannot travel more than 200 metres, so how I had that result I'll never know.

So after all these results, am I correct in assuming no one with mental disabilities can receive PIP and that it is a physical disablement only benefit?

Replies

  • templartemplar Member Posts: 11 Listener
    ...and I've just realised I've posted this in the wrong part of the forum.  Great one, Paul.
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Hi @templar, and welcome! No worries, I've moved this into our PIP/DLA discussions where you'll hopefully receive some guidance ASAP.
  • templartemplar Member Posts: 11 Listener
    Cheers Pippa x
  • alburybettyalburybetty Member Posts: 4 Listener
    Hi Templar, bit like de ja vu as exactly the same thing has happened to me, I have been awarded 0 for mobility, I don't disagree I can plan a journey but no way can I actually walk or even use any firm of public transport, I am appealing not because of the money, but the principle, I can't see how anything has changed since I was assessed by a doctor under DLA. I wish you all the very best and good luck for future.
  • templartemplar Member Posts: 11 Listener
    I hear you.  It seems that there is a bias against claimants that have mental disabilities.  I understand that PIP is not DLA and there is probably going to be different rates, components etc, but unless I've been incorrectly informed, PIP is the replacement benefit and on the basis of that should include all of the various scenarios of disability as the previous one .
  • mikehughescqmikehughescq Member Posts: 6,628 Disability Gamechanger
    I think the stuff around bias is largely guff. The reality is that the process doesn’t work well for anyone who can’t necessarily express themselves very well and the process itself is shockingly explained so that most people don’t undersubscribed whst it is they’re supposed to be doing.

    In this case you’ve asserted that you cannot walk beyond a specific distance bit have somehow linked that to planning and following a journey when they’re not linked at all. Distance covered relates only to mobility activity 2 and on what you describe 0 points would be correct unless of course you cannot repeatedly do 200m in which case you have an argument. 

    Planning and following is activity 1 but only d and f relate to following a journey and they’re very specifically about needing another person, assistance dog or orientation aid.
  • 1anx_mum1anx_mum Member Posts: 4 Listener
    Feel for you also going for a tribunal after nill points on all aspects of pip for my daughter who has autism/self harming/and mental health issues as well as learning difficulties ,she has been in receipt of DLA for the past 16 years plus now been changed to pip they say nill points can't believe it what a joke,we all need to keep fighting for all our cases just to show we won't let them insult disabled people any further!
  • YadnadYadnad Posts: 2,856 Member
    I think the stuff around bias is largely guff. The reality is that the process doesn’t work well for anyone who can’t necessarily express themselves very well and the process itself is shockingly explained so that most people don’t undersubscribed whst it is they’re supposed to be doing.

    In this case you’ve asserted that you cannot walk beyond a specific distance bit have somehow linked that to planning and following a journey when they’re not linked at all. Distance covered relates only to mobility activity 2 and on what you describe 0 points would be correct unless of course you cannot repeatedly do 200m in which case you have an argument. 

    Planning and following is activity 1 but only d and f relate to following a journey and they’re very specifically about needing another person, assistance dog or orientation aid.

    I can only but agree with you. Your first paragraph explains it quite clearly that most claimants including myself have not only not expressed themselves to the standard that the DWP want but are also confused as to what the DWP are looking for from the claimant in the PIP process.

    In my case I read the instructions given by the DWP in their notes to the claim form and try to follow them to the best of my ability. Some of those notes are clearly attempting to dissuade claimants from making their case. Take the fact that they do not want to see any evidence that is more than 2 years old and that you should not send any evidence in that the DWP have had in the past. That doesn't leave very much in my opinion unless you have a continually updated and comprehensive Social Services report carries out by an OT that itemises each and every difficulty written in such a way that it mimics the PIP descriptors. Given the current state of our Social Services I doubt that such a report will be forthcoming for the majority.

    Even writing your 'story' to each descriptor is generally dismissed by the DWP when they receive the assessors report that negates everything that you have written on the basis that the DWP see that report as being the 'best evidence available'.

    It does seem to me after 5 years of plugging my case that something is going wrong. No doubt it is because I am a layman in all of this and should have access to good advice that would steer me in the direction of how to fill out these documents in the 'right way'. However that access is not there. I have tried in the past but failed. So like many we go it alone effectively with 'one arm tied behind our backs' simply because we don't know enough or fully understand what is required.

    That argument would never wash with the DWP as they assume that everybody has access to this professional advice for the asking. The DWP are also of the opinion that PIP is easy to understand in any event - they say they made it that way! 


  • templartemplar Member Posts: 11 Listener
    I think the stuff around bias is largely guff. The reality is that the process doesn’t work well for anyone who can’t necessarily express themselves very well and the process itself is shockingly explained so that most people don’t undersubscribed whst it is they’re supposed to be doing.

    In this case you’ve asserted that you cannot walk beyond a specific distance bit have somehow linked that to planning and following a journey when they’re not linked at all. Distance covered relates only to mobility activity 2 and on what you describe 0 points would be correct unless of course you cannot repeatedly do 200m in which case you have an argument. 

    Planning and following is activity 1 but only d and f relate to following a journey and they’re very specifically about needing another person, assistance dog or orientation aid.

    So planning and following a route isn't actually traversing the route then?  I wish they had made that clearer.  I took "following" for actual physical traveling.  As for the 200 metre bit I rarely leave the house as there is nowhere I can get to.  The last significant journey I made outside my comfort zone was years ago with a psychiatric nurse who I left standing there when I ended up having a panic attack and ended up briskly and unceremoniously heading back to my house.
  • YadnadYadnad Posts: 2,856 Member
    templar said:


    So planning and following a route isn't actually traversing the route then?  I wish they had made that clearer.  I took "following" for actual physical traveling.  
    A prime example of the lack of clear instructions given by the DWP on their forms and notes.
  • mikehughescqmikehughescq Member Posts: 6,628 Disability Gamechanger
    Planning a route is exactly that. Following is about the ability to nab8gate not the ability put one foot in front of another.
  • YadnadYadnad Posts: 2,856 Member
    Planning a route is exactly that. Following is about the ability to nab8gate not the ability put one foot in front of another.

    It all depends on how the word is used and in what context. Is it a preposition, noun or adjective? The word could be used to describe moving along - mobilising.
  • mikehughescqmikehughescq Member Posts: 6,628 Disability Gamechanger
    All defined in the regs, guidance and caselaw. Latter is especially clear.
  • templartemplar Member Posts: 11 Listener
    All defined in the regs, guidance and caselaw. Latter is especially clear.

    So for all twelve activities only one of them covers mental incapacities.  No bias against mental illness then.
  • mikehughescqmikehughescq Member Posts: 6,628 Disability Gamechanger
    Er, only if you’re very literal. Every activity uses the 50% rule and every activity is governed by the concept of being able to do something reliably i.e. safely, to a reasonable standard, repeatedly or in a reasonable time. Every single one of those concepts can be impacted by a physical, mental ill health or sensory issue. 

    So, no, no bias at all I’m afraid. 
  • templartemplar Member Posts: 11 Listener

    I've come to the

    Er, only if you’re very literal. Every activity uses the 50% rule and every activity is governed by the concept of being able to do something reliably i.e. safely, to a reasonable standard, repeatedly or in a reasonable time. Every single one of those concepts can be impacted by a physical, mental ill health or sensory issue. 

    So, no, no bias at all I’m afraid. 

    I've come to the conclusion that PIP does not cover my mental disability at all.  It's very unlikely I will receive the lowest standard rate for agoraphobia.  The only part of this benefit that covers my problem is the moving around part.  I can move up to 100-150 metres from my house, no more.  Would you then concur that I am not sufficiently disabled to be awarded this benefit?
  • YadnadYadnad Posts: 2,856 Member
    All defined in the regs, guidance and caselaw. Latter is especially clear.

    Thanks Mike, it may well be defined in regs, guidance and caselaw, but looking at it from an amateur's point of view (which the majority of us are) I doubt very much that we would (a) have access to the regs or caselaw and (b) even if we did at the public library would we all be expected to find and understand the info?

    The ordinary meaning should be as per the ordinary dictionary and then it depends of the tense used.
    I hold you in high esteem from your work on Rightsnet, but you must remember you are an expert at this whilst the rest of us that can't access professional help  simply muddle along using every day language. 
  • mikehughescqmikehughescq Member Posts: 6,628 Disability Gamechanger
    I would not be so foolish to offer specific advice on a web forum as to likely rates of entitlement based on so little information. However, I am confident that your conclusions about the applicability of PIP to you is inaccurate. Agoraphobia is comfortably covered by the planning and following a route descriptors and will also impact a number of daily living descriptors. I say that as one of the two reps. who first established in case law that agoraphobia was covered by lower rate mobility in DLA (back in 1994).

    I wou;d also say that it’s useful to remember that PIP is not about being “sufficiently disabled”. It has always been about the consequences of an impairment rather than the severity. Two people can have the same condition and one might be objectively less severe than the other. All that matters though is the extent to which it impacts daily. One might, for example, have a series of aids which may not for whatever reason, be available to the other... and so on. 
  • mikehughescqmikehughescq Member Posts: 6,628 Disability Gamechanger
    @yadnad dictionary definitions are generally the starting point unless regs. offer a more specific definition. 
  • YadnadYadnad Posts: 2,856 Member
    @yadnad dictionary definitions are generally the starting point unless regs. offer a more specific definition. 
    Thanks Mike. I agree that they are the starting point and that the definition may well be further defined by a court of law as to the context of the word.

    What I am attempting to say but not very well, is that no blame should be forced on anybody and in particular by the DWP if that claimant can only understand a word by reference to it's common and every day usage. 

    As an example I qualified as an accountant and then further qualified in UK taxation many many moons ago. I have spent years using words and phrases that most people would not be able to understand why they are used in a particular context. 
    The same would go for welfare claims initially, the contents of the Acts (but not the spirit) and the court cases that set a precedent etc  Who other than a person qualified in that subject would understand what should be put on a form and how it should be worded? 

    If every claimant had the option to obtain good professional advice this would not only make life a lot easier for the claimant but also make it more difficult for the DWP to keep control of their PIP budget. 


  • templartemplar Member Posts: 11 Listener
    Yadnad said:
    All defined in the regs, guidance and caselaw. Latter is especially clear.

    Thanks Mike, it may well be defined in regs, guidance and caselaw, but looking at it from an amateur's point of view (which the majority of us are) I doubt very much that we would (a) have access to the regs or caselaw and (b) even if we did at the public library would we all be expected to find and understand the info?

    The ordinary meaning should be as per the ordinary dictionary and then it depends of the tense used.
    I hold you in high esteem from your work on Rightsnet, but you must remember you are an expert at this whilst the rest of us that can't access professional help  simply muddle along using every day language. 
    He seems like a knowledgeable sort of chap.  I do apologise if I've allowed my frustrations at my circumstances to imbue my responses.
  • WaylayWaylay Member Posts: 949 Pioneering
    Most charities are if the opinion that PIP doesn't work as well for mental health conditions, invisible conditions, and fluctuating conditions. I think that's largely due to bias (unconscious or conscious) on the part of the assessors and Case Managers. 

    I agree that a lot of claimants don't express themselves well, but I also agree with @Yadnad. Most people assume that words have their common definitions, and they probably don't ever think to look up caselaw, or regs. Those of us who do are a) experienced at claiming, b) have probably learned that we have to look up these things by bitter experience, or c) either have experienced help, or have found a site like this where people give advice. 
  • mikehughescqmikehughescq Member Posts: 6,628 Disability Gamechanger
    @Waylay charities say lots of things. Some are right. Some are what they have to say to appease people. Some are just plain wrong. I’m not saying there’s no issue for people with mental ill health as clearly there is but far too many people suggest that it’s somehow far worse for them as a group when the evidence base for that looks fairly negligible when you start to look at physical disability, multiple disability and sensory impairment.

    Mental ill health is always held up as an invisible impairment but by and large it really isn’t. It manifests itself in very obvious visible ways in many cases and to suggest people with mental ill health are some homogenous group who are all vulnerable; all have the same issues is simply incorrect. Stats. actually suggest people with mental ill health do considerably better on PIP than for example those with sensory impairments. The difference is that one has multiple charities making their case and millions from government and elsewhere and the other not. The loudest voice gets itself heard.

    Stats. on mental ill health could be politely described as somewhat debatable once you look at how they’re compiled and there’s some evidence that there’s nearly as many people with sensory impairment and yet the rate of claim and successful claim is way down on mental ill health. 

    If there’s a bias on the part of HCPs it’s toward glib answers rather than against specific conditions. Yes, we’ve all heard ”they made good eye contact and didn’t appear depressed” type statements but that’s not a bias toward invisibility. It’s a bias toward taking snapshots and that’s being done across all disabilities. 

    As far as legal interpretation is concerned nowadays it’s easy with the internet. Regs. have always given things their plain English meaning and contained definitions where they have not. You now have great sites like PIPinfo from LASA which brings that together with case law and guidance for the avoidance of doubt. 
  • WaylayWaylay Member Posts: 949 Pioneering
    @mikehughescq Mental health: Hmmm, interesting. By sensory impairment do you mean vision and hearing problems? I wouldn't know much about that. It seems mad that they're having more trouble getting PIP than MH patients! I'll go and do some research, as I sometimes help people with their claims (in an unofficial capacity), and I was unaware of this! Thanks!

    In several assessments I've been assessed as showing no signs of depression/anxiety/BPD, including my last assessment (0 points). I was obviously anxious, even on a large dose of diazepam, and the anxiety was masking the depression (I was insanely worked up). So even.in their "snapshots" they ignore clear evidence. :/

    I also apparently showed no signs of pain, which is a laugh! I was on paracetamol, naproxen, 150mg of tramadol, diazepam, and gabapentin, and I was still in enormous pain. I was having trouble standing up straight, and a couple of times I gasped involuntarily as another muscle spasmed. I also told him several times that I had to get up and stretch to keep the spasm from completely debilitating me. And yet, no signs of pain. The assessor clearly knew nothing about mental health conditions, or chronic pain. :/

    With regards to the legal/definition stuff: yes, it is easy to find online, bit that assumes that the claimant can get internet access, understands the WWW, etc. It also assumes that the claimant *knows* that the DWP is evil, and thus goes and looks for that info. I'm sure many people, particularly first-time claimants, assume that the system is there to help them. Why would they need to look stuff up in that case?
  • mikehughescqmikehughescq Member Posts: 6,628 Disability Gamechanger
    edited May 2018
    Yes, I mean sight and hearing impairment.

    Wholly agree with the rest of your post. It’s the snapshot stuff which is a problem but, as you say, they don’t even get an accurate snap shot.

    I love their “no signs of...” type statements. Easy to ridicule at a tribunal.
  • WaylayWaylay Member Posts: 949 Pioneering
    @mikehughescq Yes, you're right, people with MH problems are definitely not a homogeneous group. However, I think you're wrong about MH problems being physically visible in most cases. Depression and anxiety are by far the most common mental illnesses, and unless one is severely ill, or in crisis, any outward signs of these illnesses tend to be fairly subtle. Real doctors and MH staff would notice flat affect, speaking fast, being extremely tense, not looking at anyone when you speak, but clearly my assessor, who was a paramedic, missed all those signs. People with these kinds of MH problems tend to have learned not to leave the house/room/bed when we're really poorly. If we absolutely must go somewhere, theb we tend to have had a lot of practice at hiding our symptoms so as not to attract attention or worry people. Once I came on to this forum, I realised that I had been doing that in the assessment, as much as possible (I really was a wreck). After over 32 years of mental illness, it's automatic. :/
  • YadnadYadnad Posts: 2,856 Member
    edited May 2018
    Waylay said:
    @mikehughescq Yes, you're right, people with MH problems are definitely not a homogeneous group. However, I think you're wrong about MH problems being physically visible in most cases. Depression and anxiety are by far the most common mental illnesses, and unless one is severely ill, or in crisis, any outward signs of these illnesses tend to be fairly subtle. Real doctors and MH staff would notice flat affect, speaking fast, being extremely tense, not looking at anyone when you speak, but clearly my assessor, who was a paramedic, missed all those signs. People with these kinds of MH problems tend to have learned not to leave the house/room/bed when we're really poorly. If we absolutely must go somewhere, theb we tend to have had a lot of practice at hiding our symptoms so as not to attract attention or worry people. Once I came on to this forum, I realised that I had been doing that in the assessment, as much as possible (I really was a wreck). After over 32 years of mental illness, it's automatic. :/
    In the first PIP2 I spent countless hours trying to show how mental illness does indeed affect my life. This was backed up with a comprehensive report written some years earlier by my psychiatrist which set out the difficulties I was encountering. Not just the obvious ones but having to be taught how to make a simple meal at the Day Centre overseen by my OT. In addition I submitted the usual rubbish of having my illness confirmed, the reason why I had developed it and the medication that was being prescribed.
    Following the face to face assessment, the report came back with 14 one line reasons why I did not and never have had a mental health problem - good eye contact, didn't look depressed, didn't rock, etc etc .
    That did it for me. The second and third forms did not have any mention of mental illness or the effects it had on my life. I didn't see the point as the DWP quite clearly believed that I was faking the whole thing despite the evidence submitted.
    The second and third assessors' reports also had the same comments as in the first report yet there was nothing on the forms that indicated any mental health condition given that I had purposely and carefully removed all reference to it. I wasn't going to be called a liar for a second and third time. 
    I honestly believe that the assessors' pre-empt a possible claim for mental health difficulties even if one is not being claimed.
      "we tend to have had a lot of practice at hiding our symptoms so as not to attract attention"
    And as they say practice makes perfect! I too have become an accomplished actor as the last thing I want is to be singled out by the public at large as looking/acting like something is not quite right with me.
  • mikehughescqmikehughescq Member Posts: 6,628 Disability Gamechanger
    By and large, and controversial as it is, mental ill health is no less visible than any other impairment. People with sight impairments bluff their way through life just as much and people with physical disabilities have coping mechanisms that are often awesome and sometimes even unknown to them.

    As I’ve also said, the figures for mental ill health in the UK have what might be described as some flimsy methodology and an entire medicalised and politicised industry behind them, which other impairments struggle to match. None of the aforesaid should be read as in any way demeaning mental ill health.

    At the risk of playing disability top trumps, most of us believe our impairments are difficult to explain and harder to see, Occasionally that is true but people with episodes or life long mental ill health often fail to appreciate just how much others see their silence or invisibility as clear evidence of an issue. Nothing is as invisible as it seems. 

    Side note - even as someone with poor eye contact I’ve little sympathy for the “i didn’t make poor eye contact” argument on two fronts. One is that its easy to fake once you believe it’s a symptom and thus impossible for any medical professional to sensibly draw conclusions from without other information. The other is that it’s prevalance is vastly over-stated. Indeed I speak to more MH professionals who say that making unnerving steady eye contact is a more prevalent symptom. 
  • WaylayWaylay Member Posts: 949 Pioneering
    @mikehughescq Interesting. My good friends notice when I'm not around/not answering texts, etc. but a stranger obviously wouldn't. I was speaking very fast, and very quietly, at my assessment, but how would the assessor know that? He had never seen me when I wasn't anxious. Unless I'm raging, extremely irritable, unable to speak, or talking to myself (in those cases I don't leave my room and don't have anyone over), I'm pretty sure that nobody can tell that I have mental illnesses. I say this because I'm extremely honest about my mental illnesses, mostly on FB, but also in real life when it's germane to the conversation. I've had about 25 people say some variation of, "I had no idea! I never would have guessed that you have severe MH issues." 🤔 But then, remaining unnoticeable is a bit of an obsession for me (childhood abuse), and I have ~28 years of practice; it's become a part of me now. 

    But yes, I agree that other invisible illnesses/disabilities are just as invisible. A good friend of mine was almost blind due to cataracts (she's since had them removed and can see so much better now!), but I had no idea until the... 5th? time we hung out? It had been going on so long that she had learned how to deal. The only way she showed it (and the point at which I, and many of our mutual friends, figured out that she had vision problems) was when she had to look at printed stuff close up (a menu, newspaper, etc.). She'd have to push her glasses down, look over the tops of them, and hold the menu/whatever about 2 feet from her eyes. 
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