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DefineTerminal Illness

male45male45 Member Posts: 313 Pioneering
Below is a link to a news article explaining that Lorraine Cox of Darrylin  in Northern ireland is asking a court here in Belfast to review her case when she claimed PIP 
Hopefully she wins and it helps others suffering from MND 

https://www.bbc.co.uk/news/uk-northern-ireland-53081997
Best Wishes 

Replies

  • katho31katho31 Posts: 694 Member
    hi @male45, i have just read the article, so very upsetting. i hope and pray she gets the entitlement she deserves. what a utter disgrace, but thank god she has somehow found the strength to fight and hope she wins, and yes it will help many others. such brave lady
  • male45male45 Member Posts: 313 Pioneering
    Hi @katho31
    I totally agree with everything  you said. Shes been very brave and should never have had to go throufh so much.
    I'll try and keep an eye on her case. Tonight a short note just said hearing to continue Friday.
    Thank you 
    Best wishes
    Best Wishes 
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    I'll probably get into trouble for stating this but PIP is not there to support terminal illness, it is there to support people with ability limiting conditions once they are actively limiting. This is the main reason why I get so frustrated with people thinking that Cancer is a disability. If and when ANY illness or condition limits abilities then and only then should they be able to get PIP and support from the health services for maintaining at least some sort of life. I have seen so many people who are actually disabled and getting no help, who cannot look after themselves and who have little or nothing to look forward to that when I see or hear someone who is fit and able claiming they deserve support simply because they will die soon I get very annoyed. Yes it is sad and a shame but it is up to them to deal with it and make the best of it and not expect everyone else to look after them until they need it.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • chiariedschiarieds Community Co-Production Group Posts: 8,124 Disability Gamechanger
    Probably playing Devil's advocate here, but MND can be progressive, & there is no known cure, but some people who have it can live a very long time (consider Stephen Hawking). Don't get me wrong, as I would hope Lorraine is awarded PIP, & no, it shouldn't have taken so long for a decision to be made.
    I completely disagree with Topkitten however, as PIP is for both people whose disability impacts their daily living &/mobility, & provision is also made for people with a terminal illness, which may, or may not be cancer (which can undoubtedly be disabling in many instances). They are not mutually exclusive. Please see the DWP's guidance to verify this: https://www.gov.uk/pip/claiming-pip-if-youre-terminally-ill

  • mikehughescqmikehughescq Member Posts: 6,010 Disability Gamechanger
    The issue is with defining terminal illness as more likely than not to die within 6 months. 

    I’m not sure there’s anything disgraceful about it at all @katho31. If she has sufficient daily living/mobility needs she would qualify through the same route as everyone else and if she’s defined as terminally ill then she would be fast-tracked on one component only. 

    I wouldn’t express it as @Topkitten did but I get the concern. The extent to which cancer creates daily living/mobility needs depends entirely on the type, the point of diagnosis and the nature of the treatment. I had a client who had a brain tumour which everyone said would kill them within 6 months. 28 years later they’re still going. They’re functioning is very limited but it’s absolutely right in my personal view that they get a 10 year PIP award of both components rather than go the terminal illness route and only get fast-tracked on one. 

    News sites are not a great place to get to the truth of a story but the gist of her argument appears to be that the stress of diagnosis means she should be fast-tracked even though no-one is saying she’s 6 months or less to live. I don’t think that’s an especially strong or helpful argument. Taken to its logical conclusion, anyone who is stressed by a diagnosis of a condition which will one day kill them, should qualify immediately regardless of need. So, COPD is a killer. In the early stages there may not even be a cough but using this logic a recent diagnosis of COPD would suffice. 

    I can’t believe a court is going to buy the argument. There’s certainly some changes needed to the terminal illness rules. I’m not sure this is the case to start the ball rolling. 
  • katho31katho31 Posts: 694 Member
    i have put you, mike hughes, on my ignore list. i would be grateful if you did not use my name again. simple as that. your advice is not welcome to myself.
  • mikehughescqmikehughescq Member Posts: 6,010 Disability Gamechanger
    I’m fairly confident I’ve offered no advice on this thread @katho31. I offered a personal opinion based on my professional experience and knowledge. I politely disagreed with your opinion and I’m equally confident that doesn’t breach any T&Cs here either. You could further disagree with me and explain why. I doubt you will. You seem instead to wish to administrate any thread to which you contribute. It’s a weird approach to a discussion forum. 

    My equally personal view is that I’ve no problem with being on anyone’s ignore list but it’s a thing which can be done without putting a post up. Do others need to know I’m on your ignore list? I can’t see why they do. It’s passive aggressive and unnecessary. 

    I do apologise for interrupting the flow and purpose of the thread but if people can’t cope with someone expressing an opinion and explaining why... 
  • male45male45 Member Posts: 313 Pioneering
    @katho31 and @mikehughescq
    I am so sad to read that because I posted a discussion on define terminal illness that you are both upset with each others posts. 
    May I humbly apologise  to you both and offer to the admins to please remove my topic from the forum.
    I never ever would wish any member to fall out .
    I honestly am so thankful to all here who have made a contribution to the topic.

    Please consider this topic closed as I do not wish further controversy between members.

    @admins please close this as I don't know how.

    @katho31 and @mikehughescq PLEASE SHAKE HANDS 
    Best Wishes 
  • mikehughescqmikehughescq Member Posts: 6,010 Disability Gamechanger
    I’d keep it open @male45 it’s an important discussion as it is an area needing reform.
  • atlas47atlas47 Member Posts: 118 Pioneering
    Hi @male45

    Could I suggest that you keep this thread open.

    The case you have highlighted was heard in the Court of Appeal, in Northern Ireland, last week. Before three Judges and a record of these proceedings will be made public in a week or so.

    I will post their findings on this thread, so we all have a better understanding.

    I also wish to register my support to Lorraine Cox, for having to have to go through with this Judicial Review, whilst at the same time, dealing with her recent diagnosis of MND.

    May her God be with her.

    Stay kind and be safe.

    Best wishes
  • katho31katho31 Posts: 694 Member
    hi @atlas47, thank you for informing everyone, and also thank you for telling us that you are going to post their findings. im interested to know the outcome, please try to ignore my own disagreement with another person who posts. i did not sign up to this website to upset anyone, but nor can i or will i be either disregarded or told my views whilst posting online are annoying/upsetting to a certain person. the person im referring to has been told, many times, not just by myself, to stop. if this continues to happen and my name is mentioned, i will take action. best wishes, take care and be kind  :)
  • mikehughescqmikehughescq Member Posts: 6,010 Disability Gamechanger
    Northern Irish cases have limited traction over here but nevertheless it’ll be interesting to see what happens. Wouldn’t be the first time I’ve been wrong predicting an outcome. 

    @katho31 I’ve reported it. Having a different opinion is not a crime. Nor is expressing it politely. My exact words were “ I’m not sure there’s anything disgraceful about it at all”. 

    Enough already. If you don’t like opinions probably best to not have one and not express it publicly of you’re not going to allow for people politely disagreeing.
  • katho31katho31 Posts: 694 Member
    hi, @male45, dont worry, you are a very empathetic person, many on this forum appreciate and relate to your post. stay connected, i dont know whether adrian/chloe from scope work online at the weekend? i will be speaking to them on monday anyway, dont be upset or think you have done anything to upset any of us please. ive only been online a couple of months, so still finding my feet so to speak  :) stay safe, be kind and god bless you all  :)
  • atlas47atlas47 Member Posts: 118 Pioneering
    edited June 2020
    Hi @mikehughescq

    I have much more to say about your prediction about COPD.
  • katho31katho31 Posts: 694 Member
    hi @atlas47, i and many more are looking forward to that, my late and dear mother passed away may 2018, she never smoked but had COPD, she had asthma as a young child, grew up near a colliery and went on to work at Beechams, where they werent given masks/little or no health and safety so didnt have a chance. people in her close family smoked, as did a lot then and she sadly succummed to this dreadful illness.
  • male45male45 Member Posts: 313 Pioneering
    edited June 2020
    HI Folks

    Ok @admins.PLEASE IGNORE MY PREVIOUS REQUEST TO CLOSE THIS TOPIC..THANK YOU 😃 

    Folks I really do appreciate all your support and comments.
    I will keep searching bbc new ni for updates of the case.  @atlas47 if you find the update of her case by all means post it please. 😃 
    I do support anyone who is brave enough to go to court to fight for what they feel is right.

    I do wish Lorraine all the best of Irish and hope she wins.. 

    My best wishes to you all here. Please enjoy the rest of your weekend. And may I wish all the fathers a very happy fathers day.
    Male45

    Best Wishes 
  • katho31katho31 Posts: 694 Member
    best wishes, take care and stay safe  :)
  • mikehughescqmikehughescq Member Posts: 6,010 Disability Gamechanger
    atlas47 said:
    Hi @mikehughescq

    I have much more to say about your prediction about COPD.
    Hi @[email protected]. Sounds interesting. I look forward to the discussion. 

    I’m not sure I made a prediction about COPD as such. I just used it as an example of a condition where we know the prognosis is not good but in the initial stages there may not be much in the way of daily living or mobility needs so an award of PIP under the special rules would not currently be appropriate. 
  • mikehughescqmikehughescq Member Posts: 6,010 Disability Gamechanger
    Interesting reading slightly more detail here. 


    Not sure whether the UC element is part of the JR but the cancer analogy looks weak to me. Few people with cancer get an accurate prognosis. As per my example above many people live much longer than their prognosis and many people much less. It’s certainly the case that a number of people get PIP DL under the special rules but then live longer than 6 months. My point being that the prognosis for cancers is not necessarily any more accurate than it is for MND or indeed many other similar conditions. It has an arguably similar “unpredictable trajectory” as they put it.

    Nowhere in the argument does it address the thorny issue of the fact that most people with life-limiting conditions who struggle to go the DS1500 route do so not because of their condition but because the professionals who could certify them decline to do so for a wide variety of reasons.  

    The process certainly needs revisiting and has been widely raised by a number of organisations in the last couple of years. Reform producing genuine improvements is rarely easy. The inference that cancer patients largely have it easier seems a little misguided to me. Both conditions are horrible but I’m not sure this is the case to pin reform on. 
  • atlas47atlas47 Member Posts: 118 Pioneering
    Interesting reading slightly more detail here. 


    Not sure whether the UC element is part of the JR but the cancer analogy looks weak to me. Few people with cancer get an accurate prognosis. As per my example above many people live much longer than their prognosis and many people much less. It’s certainly the case that a number of people get PIP DL under the special rules but then live longer than 6 months. My point being that the prognosis for cancers is not necessarily any more accurate than it is for MND or indeed many other similar conditions. It has an arguably similar “unpredictable trajectory” as they put it.

    Nowhere in the argument does it address the thorny issue of the fact that most people with life-limiting conditions who struggle to go the DS1500 route do so not because of their condition but because the professionals who could certify them decline to do so for a wide variety of reasons.  

    The process certainly needs revisiting and has been widely raised by a number of organisations in the last couple of years. Reform producing genuine improvements is rarely easy. The inference that cancer patients largely have it easier seems a little misguided to me. Both conditions are horrible but I’m not sure this is the case to pin reform on. 
    I agree with your earlier post on this thread, “News sites are not a great place to get to the truth of a story...”

    Then you recycle another “News site”, knowing that I have previously stated, I will post the Judicial Review of this specific case, via BAILII, in due course.

    Not sure why you need to create such speculation, without reading the actual facts and arguments of a specific case.
  • mikehughescqmikehughescq Member Posts: 6,010 Disability Gamechanger
    edited June 2020
    The answer to that is very simple @atlas47. Right now, the full facts of this specific case are not out there at all. I posted the most detailed summary I could find at short notice. Certainly not much more to it but more detailed than the BBC (in itself a telling thing nowadays).

    The original poster started a thread of speculating with the words "I hope she wins" so I see little wrong with offering an opinion on that.

    If my opinion turns out to be wrong then that's fine. So be it, but that's likely to be largely precisely because we're discussing a case where the full facts are not in the public domain and the ones which are don't especially point to a win.

    If you have a better more detailed source right now then by all means enlighten us all and post it.
  • atlas47atlas47 Member Posts: 118 Pioneering
    Hi @mikehughescq

    Crack on.

    Keep your schoolboy arguments at bay, I’m off to play with my mates, in the playground.

    Stay kind and be safe.
  • mikehughescqmikehughescq Member Posts: 6,010 Disability Gamechanger
    edited June 2020
    Hmm. I did think you were looking for a reason to have a go rather than a mature discussion on a very serious point so I’ve reported the post. You also know where the ignore button is but chose a personal attack instead.

    Essentially then I take it you don’t actually have any other information until the decision is published.
  • CJ61CJ61 Member Posts: 57 Courageous
    Please people....be kinder to each other. Isnt life difficult enough already
  • CressidaCressida Member Posts: 785 Pioneering
    If people want to argue with each other can you please pm each other rather than writing 'snarky' passive aggressive posts on here. It's disturbing for others. 
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,955

    Scope community team

    I've unfortunately had to close this thread, which is disappointing as it could have made for a very interesting discussion about an important topic.

    Please remember that it's okay not to share the same opinions or to agree on everything. However, it's not okay to cause offence or attack another because you don't agree with them.
    Senior Community Partner
    Scope

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