Hi, my name is Tariq! I need legal advice relating to the NHS and DLA — Scope | Disability forum
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Hi, my name is Tariq! I need legal advice relating to the NHS and DLA

Tariq Member Posts: 5 Listener
edited October 11 in PIP, DLA, and AA
I need legal advice relating to the NHS and DLA


  • Ross_Scope
    Ross_Scope Posts: 5,005

    Scope community team

    Hi @Tariq

    Welcome to the community. 

    What is the problem you are facing? We can't provide legal advice as such on the community, but we do have a lot of members with vast knowledge of the benefits system who might be able to offer their insight. 

    For professional advice, you could contact CAB, your nearest Welfare Rights or enter your postcode into Advice Local.
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  • Tariq
    Tariq Member Posts: 5 Listener
    Hi Ross, 

    Thank you for your quick response. Both my daughters are severely sight impaired and have albinism and albinism related disabilities. I have been fighting to get them the higher rate dla since 2015 and I finally got it in December 2020 and February 2021. I want to take this further as either the NHS or dla are accountable for me not getting the correct benefits. This has cost me a great deal and I feel as their vision is so limited they should have got it in 2015 on my original application. 
  • janer1967
    janer1967 Member Posts: 12,375 Disability Gamechanger
    Hi there

    Sorry for the difficulties you have had

    Did you appeal the original decision and take it to tribunal ? 

    I don't understand why the NHS are accountable for benefits 

    If you can give us more details as to what you have done so far we maybe able to help 

    Alternatively get advice from welfare rights 
    I have professional experience in HR within public,  private, and charity sectors.  If I can't help I will
  • poppy123456
    poppy123456 Member Posts: 23,908 Disability Gamechanger
    I'm confused why the NHS are responsible for you not successfully claiming DLA for your children? NHS have nothing at all to do with any benefit claims and you don't need a diagnosis to successfully claim a disability benefit.
    When you originally applied in 2015 if you weren't successful then you should have requested the Mandatory Reconsideration, followed by Tribunal. None of that has anything to do with NHS. When you received the decision for those claims originally in 2015 at the bottome of the letter it would have had details of what you do if you disagreed with the decision. Too late for any of that now because you're well outside the maximum time limit of 13 months.
  • wilko
    wilko Member Posts: 2,415 Disability Gamechanger
     Asking or expecting the NHS to give a refund for a benefit you think or thought your daughters where entitled to has nothing to do with the NHS.When your daughters didn’t meet the criteria in 2015 having been diagnosed if correct then it was your duty snd responsibility to request a mandatory reconsideration of your daughters DLA claim sending more information and supporting evidence. Waiting for 5 years is and maybe to late to appeal. Your best bet is to seek legal advice from a person or persons who know and understand the benefits system .
  • poppy123456
    poppy123456 Member Posts: 23,908 Disability Gamechanger
    wilko said:
     Waiting for 5 years is and maybe to late to appeal. Your best bet is to seek legal advice from a person or persons who know and understand the benefits system .

    As advised previously, the maximum time a person can appeal a decision is 13 months. Legal advice isn't needed here.
  • Tariq
    Tariq Member Posts: 5 Listener
    Hi guys, thank you for the feedback. I have not clarified the whole situation here. My daughters have albinism. I recently had a discussion with the ophthalmologist who said that in regards to both my daughters, as the day wears on, because of their nystagmus and albinism related disabilities, there vision deteriates massively. As an example, one of my daughters has a vision at best which is 6/60. This score itself should entitle higher rate dla but I was only getting the lower rate, and then the middle rate right until December 2020. I initially thought it was the dla who should have given the right benefit but there decision is based on what the scores the eye department has given. If a more clear instruction was given to the dla, I feel I would have been given the higher rate back in 2015. I feel that the hospital did not give the correct evidence until recently. 

    Please give me your thoughts and many thanks in advance... 
  • poppy123456
    poppy123456 Member Posts: 23,908 Disability Gamechanger
    My advice remains the same, even after reading your last comment. DLA is not awarded based on any diagnosis and never has been, it's how those conditions affect you. It has nothing at all do to with the NHS. When applying for a benefit such as DLA then it's your responsibility to send in evidence to prove you qualify, not the NHS or anyone else.
    If you weren't happy with the decision back in 2015 then you could have challenged it.. 6 years later is well outside the maximum time limit of 13 months.
  • mikehughescq
    mikehughescq Member Posts: 7,538 Disability Gamechanger
    edited October 11
    Ooh, right up my street :). Seeing as I'm here...

    1 - You needed in theory to have lodged mandatory reconsiderations against both DLA decisions inside a month but, if not, then inside 13 months as the brick wall limit. Your MRs would have failed because a claim for the DLA MC @ HR on this basis is based totally on the readings under the sight-impairment criteria. The DWP decision maker can in these circumstances only go with what they have. You need to fix the evidence before the decisions can be revised in any way. Even if you'd done MRs and gone to appeals they would also have failed because of the metrics provided.  

    2 - Worth saying that the 13 months is a brick wall limit but even that could arguably be demolished in limited circumstances. I am not convinced it's relevant here though. Based on the evidence they had the DWP could only make the one decision. 

    3 - I think there's some confusion over DLA rates here. The vision criteria relate to the mobility component of DLA. There are only 2 rates of that. There is not and never has been a middle rate for mobility. 

    4 - You have not specified the age of your children nor what "albinism related disabilities" means. Some clarity on this would be helpful. Whilst your medical professional is correct to say that a person with Nystagmus and Albinism could see a deterioration in their vision throughout the day that is not a given by any means; will vary hugely from person to person and certainly varies with age and the ability to manage your vision. I would not expect a 3 or 4 year old to do anything but tire throughout the day. A 15 year old may do the same but may realise they need to put their iPad down; stop reading; have a 20 minute nap and so on. So, more detail please if you feel up to it. 

    5 - The DLA sight criteria are not relevant to both claims unless both daughters are registered SSI and meet all the subsequent criteria. This is a nuanced and problematic area. 

    Firstly, the criteria talk about having vision of less than 6/60. So, if either daughters are capable of 6/60, even if at best, then they do not qualify. There is no averaging out or "well it's this at 9am but this by midday and then by 5pm it's this." The only thing which counts is the data on the CVI which led to registration. The expectation is that the person completing that will have recorded what it is like most of the time. They are neither asked nor obliged to record best or worst or an average. It is simply "best corrected". So, if best corrected at some point hits 6/60 then I'm afraid you have no argument. 

    These criteria were challenged and declared ultra vires and discriminatory. However, no-one has pressed for change and the issue is effectively dead at this point. 

    Secondly, the DLA mobility sight criteria are not just about visual acuity. There are also very specific requirements around loss of both central and peripheral vision. You make no mention of those so, again, it would be helpful to know that you realise there are these other very defined criteria i.e. a complete loss of peripheral vision and severely restricted central vision to the extent it does not exceed 10 degrees. If neither of these are complied with then that's again the end of the matter. 

    So, one of the things you may need to consider here is that if the current ophthalmologist statement is that one daughter has "at best" 6/60 then even if the other two criteria are satisfied there is no case for a revision of the DLA awards. 

    It is also the case that, to some extent, there is some estimating going on here. The VA readings at the point of a CVI being completed tell you no more than the readings at that time of day. Their accuracy will depend on whether your children were babies or older children capable of saying what they can or cannot see. In other words, your current ophthalmologist may not be giving you anything precise. Just a slightly different view from what's on the CVI. Additionally the CVI may not be incorrect. It was a reading taken at a specific time of day. No-one can be held to be negligent in any way for accurately recording what was in front of them at that time

    What's my VA for example? My CVI tells you it's 6/18. Every high street eye test for a decade will tell you it's 6/12. I have readings from hospitals that give both plus a few 6/15s; one 6/9 and and 6/24 at one point. Which one is wrong? None of them. All were correct at the time they were taken.

    The VA of either of your daughters will have been what it was at the time of recording. 

    Now, I totally understand how frustrating this is. Your DLA decisions now look incorrect but they were based on information which you now believe was inaccurate but cannot possibly have been so. It was accurate at the time and all they're asked to record is best corrected and that's what they have done. 

    So, currently nothing to be challenged on the DWP side of things and nothing to challenge with the NHS. 

    What you may wish to do is to ask for further tests to establish the likely range of vision. Could be at the hospital or on the high street. Depending on the range of readings you could use that to ask for a review of what was on the CVI albeit that they could legitimately refuse given that the level of registration itself won't change. Having an understanding ECLO at the hospital could be very persuasive on the point as the medical professionals almost won't see why they should change a CVI.   

    If you can demonstrate that all three criteria are now met you will have grounds for supersession of any lower awards. If those awards are already higher rate nothing you now do can open up that past award period. So, again, there is unfortunately nowhere to go with this. 
  • Tariq
    Tariq Member Posts: 5 Listener
    Hi mikehughescq,

    I cannot thank you enough for your detailed reply... 

    I have 2 daughters aged 10 and 7, when I made my application in 2015 my older daughter was 4 years old. I also have a newborn who is 3 weeks old but has the same conditions as my daughters but we dont know the extent of his vision as he is too young. 

    Please see my responses to your points...

    1, 2 & 3. This is a 100% accurate answer to what had happened. I did go down the mandatory route all the way to a tribunal but the decision is always based on the evidence. I did not even know about the benefits available up to 2015 and I was advised to take it further by the high street opticians as they deemed the lower rate was not right for my older daughter. I had asked the eye department team (who are absolutely fantastic and always help me when required) to provide further support for my dla case. Once they had given me a supporting letter, I had then been issued in 2016 the middle rate for the  care component and lower rate for mobility. You are correct that there is no way that the decision could be overturned even at a tribunal because I had no other evidence. 

    4. Both my girls have albinism, manifest nystagmus, exotropia, astigmatism and myopia. Both are registered severely sight impaired. 

    I am looking at there most recent eye scores, my older daughter has a vision logmar score of 1.28 in right eye and 1.6 in left eye, with both eyes open being 1.1 logmar. There is also some additional info which I don't understand:
    N30 at 20cm threshold 
    N16 at 10cm threshold 
    N10 at 6-8cm threshold 
    Her size print is 30 bold. 

    I can only find limited info on my younger daughter, she has a logmar score on right eye of 1.36 and left eye at 1.30 with both eyes open at 1.30.

    When I originally applied, on both CVI forms the loss of peripheral vision was not completed, I asked the hospital to complete their CVI forms again and now they have been confirmed as complete loss of peripheral vision.

    What is ECLO?

    Also, I was given the higher rate for my younger daughter after the RNIB intervined when they would not change their decision. For my older daughter who's vision is worse, I have the higher rate but not for her vision but for her UTI's that she had been consistently having over the last 2 years. I wanted your opinion on this also as this is for a limited time and I will have to go through the same process again when the 3 years are over.

    Thank you in advance and I look forward to your reply. 
  • mikehughescq
    mikehughescq Member Posts: 7,538 Disability Gamechanger
    Okay so, briefly, those logmar readings clearly suggest vision worse than 6/60 but only at the time of the reading. See https://www.rcophth.ac.uk/patients/snellen-and-logmar-acuity-testing/ for further information. The N numbers are just additions for the lens strengths required for glasses. Won’t help at all for DLA.

    None of that really helps with past records such as what was on the CVI. You cannot categorically say the CVI reading was wrong so there’s no NHS challenge there. If you have already challenged the CVI and not got the visual acuity challenged I suspect that would make it even harder to do so now and I didn’t you’d find anyone willing to correct it. They would have no basis for believing it was wrong. It’s just different and possibly just their best guess in difficult circumstances. 

    An ECLO is an eye clinic liaison officer. Sometimes also known as Patient Support depending on who funds them. They are based in eye tests in hospitals but are the lay person who acts as a link into the medical people but also as a connection to services outside of hospital. Sadly they do not exist in all hospitals but where they do they are generally brilliant. 

    As regards an award based on UTIs I think it’s important to say that there’s no such thing. The award will have been based on the consequences of all conditions. The UTIs may have swung higher rate care but they may not and may in one sense have done you a disservice because based on vision alone a longer award would have been more appropriate. It may not be a battle worth fighting at this point as DWP are rarely inclined to give longer awards for children. You would not ordinarily get an award from 3 months after birth to 16 other than in the most exceptional circumstances but an award to secondary school age would be arguable so any challenges to award length now probably won’t take you too much further forward.

    I personally think the DWP approach is incorrect. If anything a move to secondary school virtually guarantees to make things worse for a period so no review date set as 12 ought to be appropriate but it’s a hard battle to fight and you would need a welfare rights officer to fight it. 
  • Tariq
    Tariq Member Posts: 5 Listener
    Thank you for your advice. I was hesitant to take the NHS to a tribunal as the eye department has been good to me. The only thing that has been done wrong from there part is that the original CVI forms were not completed fully and crucial boxes like loss of peripheral vision were not ticked which I feel would have helped in the application.
    My older daughter has been given a 3 year higher rate, but she still has the ongoing UTI issues. Most importantly, I hope her UTI'S stop and then I can go down the same route and involve rnib to assist me as it worked for my younger daughter.

    I want to thank you for all your advice. I will not be taking the NHS to a tribunal, I was reluctant anyway but was advised by a few people. 


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