the nhs list, is it the future — Scope | Disability forum
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the nhs list, is it the future

worried33
worried33 Community member Posts: 492 Pioneering
So many companies jumping on this bandwagon now, the coop emailed me saying how they are using this list to do deliveries, EE have been sending text they prioritising support for people on this list, and of course most of the supermarkets.

My concern as well with this list if the government decides in future to scrap all assessments for PIP/ESA and think this idea is cool lets just get a list of conditions from the NHS and not qualify anyone not on the list.

I dont know of a single company thats allowing people to register themselves as in need, they are just using this list as their only source of categorising people, that is whats so scary about it, the lack of self declaring.  Some companies are even wording their statements as if this list includes the disabled, so they think they covering the disabled.
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Comments

  • woodbine
    woodbine Community member Posts: 11,519 Disability Gamechanger
    I'm not sure that will be the case, there are many people with serious problems who are not on the list and never will be, as an example I have mild COPD/astma, which isn't bad enough to get me on the list, but my epilepsy whilst not on the list will remain a problem during/after the pandemic.
    2024 The year of the general election...the time for change is coming 💡

  • worried33
    worried33 Community member Posts: 492 Pioneering
    edited April 2020
    The thing is they probably wont care, e.g. when PIP was introduced and they narrowed the criteria for mobility, they would have been aware they were denying to people who had mobility issues, they just change the criteria to more "severe" requirements.  Then tell the public they help the "most" disabled.
    Likewise we have some very ill people been told they fit for work when they claim ESA.
    So if you think you cannot see them doing this, I can, because they already constantly shrink criteria's and having a fixed NHS list saves them a lot of money in assessments.
  • jacksprat
    jacksprat Community member Posts: 21 Connected
    @worried33 It would be worrying if everyone started to use the HMG covid-19 criteria as the only measure of vulnerability.  This was my fear when Sainsbury's told all customers that they must pass that test before being allowed any deliveries!

    As I am totally dependent on deliveries for food etc, I have not been shy about raising this as an issue with anyone who would listen [including BBC news].  My attempts to get deliveries were one-offs as all supermarkets were swamped with everyone being in covid-19 lockdown.

    I was not alone in raising this issue, and without explanation, I started to see Sainsbury's delivery slots [even though my neighbour sees none].  I don't trust this situation for the future.

    There should be a way for vulnerable customers to be identified, but I am not sure of the best way.  PIP would be a start, but is not sufficient as it excludes some illnesses.

    Allowing people to be self-identify as vulnerable is open to abuse.  Asking GPs to do it when they are about to be swamped by a lot of patiients with covid-19 is not wise.


  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    edited April 2020
    @worried33, the change from DLA to PIP was the governments way of reducing benefit payments (hopefully drastically), not of helping the people concerned. this is the main reason so many people have had problems with the benefits system. The fact that it was also completed and hopelessly flawed because of leaving out so many situations they, being healthy themselves, had never heard of or experienced. I am not sure how the process of the list is supposed to work but if it's reliant on the GP's providing information then it will be also hopelessly flawed and only contain the basic illnesses they are sure about.

    As my condition really is completely and utterly unique I constantly have to argue with doctors to get them to listen while I repeat what the specialists have told me. Doing this has gotten me called many unappreciated names and even sworn at and hung up on by one GP. It has happened so frequently now that I no longer get upset by their idiocy and simply (probably sounding bored) pass on the specialists descriptions. I have even explained why some hospital and community departments will now refuse referrals. This final point usually results in me being told I have no idea about how the system works and they will refer me anyway. They never actually ring me to explain why I hear nothing because that would mean admitting I was right and they were wrong. All that happens is that I get passed onto another strange doctor who I have to try and educate so that the previous one doesn't have to talk to me and listen while I explain what should have been done instead of wasting everyone's time. In fact the only time they even bother to take any action is when I raise (or try to) a complaint with NHS England, not that any real progress is ever made and also NHS England always refuse to raise an actual complaint or implement the complaints procedure, they simply forward my complaint back to the surgery to protect the GP's. When the surgery is contacted by them is the only time they really bother with talking to me, not that any of my complaints were ever sorted. I have made 11 complaint requests so far and should now raise number 12 except it seems pointless to bother when it achieves almost nothing.

    Since I moved back to my old town 5 years ago (almost) I have had over 50 GP's at 6 surgeries assigned to me and only one of them was really helpful. She listened, explained when we hit something I didn't know and worked with me for 4 or 5 months until she moved away to get married. That is the only time I have ever had decent support. I have had 3 or 4 doctors who, for want of something better to do, simply went along with my suggestions for treatment or medication, meaning I had to completely understand everything and know the system throughout in order to make any progress at all.

    Btw, despite being restricted to a recliner chair (even for sleep) for 20-23 hours per day I only qualified for high rate mobility and medium rate care by a couple of points. The assessment was not really close to the truth but it wasn't worth arguing and may have caused me further issues to correct it. I will simply wait for my next assessment and make sure everything in the old one gets taken into account as my condition is progressive and accelerating, I never but never improve.

    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.
  • thespiceman
    thespiceman Community member Posts: 6,388 Disability Gamechanger
    edited April 2020
    Hello @worried33   Please do not understand the negativity of the post.

    If your referring to companies contacting you for help support some opportunities to give you assistance in these times.

    Do not understand the problems.

    I have many such Emails in my box and lots of them if you read carefully are considerate, kind and thinking of our community.

    I see no evidence why a company needs to be on a bandwagon if they are offering help.

    I do know Email or contacts which you can do by the way. Customer services and any other helpline companies provide.

    Are available, I have had and do deal with members of our community who have shopping delivery problems.

    Safe keys being one or dealing with stairs or access. Actually send Emails and contacted some times if I need to by phone.

    Supermarkets get a reply back.

    Even asked delivery drivers queries and questions.

    The other point is that is relevant and do stress this the whole retail market sector is a business reliant on customers the whole nature of it depends on those customers.

    Buying is an essential need of any business to generate profits.

    So ask them be polite supportive I have always done so, go what I wanted.

    Asked stores can you stock this get on line happy to find out for me, do now.

    We the term is in this together is one now being used constantly.

    We need not be asking ourselves with suspicion .  Self doubt setting course of events that cause anxiety even more.

    If continue adding negativity and depressing thoughts to your sync your who body reacts.

    Brain ear worms effect running around in your mind then to stomach then to bowels, trust me I have expertise knowledge of this, so leave it alone.

    More you go on about not relevant points more hurt you doing.

    By the way mental health teams insist you do not talk like this other wise boot you out just had that before.

    Once upon a time in this country we had some thing similar surrounding AIDS.

    Those members of the gay community being harassed subjected to fears insecurities and torment.

    Rumour abound can I catch this from toilets or glasses or touching a gay man or woman.

    All misunderstood all misinformation, unfortunately more people who were thinking like that caused reputable harm to the gay community.

    Which has never recovered, I saw friends hurt harm insinuations.

    I am not gay but have met former friends who were lost homes jobs relationships.  Due to all of the negativity . 

    As time has moved on most of the Community has accepted the diseases .

    I did few times do talks on STD and AIDS to school leavers have joined training courses. Encountered sexual activity on the course.

    Team leaders concerned I volunteered.

    Debated interesting talk any way the issue is we need to be embracing thinking positivity.

    How can I help my self and stop being self centred .  Words please thank you the most special ones to be using , do every time meet my delivery drivers or companies talking to.

    Opportunities as mentioned in previous posts are there for you to explore.

    Please consider all of these as a Community Champion a member of the team is very painful for me and do know my team colleagues to see those making issues.

    When there is help out there and need to use the links provided.

    Not ignore them if one supermarket been full up look for others being tolerant patient is a skill that is needed right now.

    Look at other lines other sources as mentioned before in previous posts.

    I have spent much time helping members. In fact let you know did speak to SCOPE researcher.

    About this situation we all in, I forget to add.

    We have at SCOPE any one who joins many ways to influence Government policy, often in the form of surveys telephone calls Emails and other communications.

    If your ever interested do this at home do not have to go any way look and speak to SCOPE.

    community@scope.org.uk.

    Or on the webpage campaigns .  Lots of ways to help not only the Community but to help make a difference.

    Please consider the links information on previous posts useful.

    Please if you need to ask anything please do happy to be helping this what I do.

    @thespiceman









    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • benjamo30
    benjamo30 Community member Posts: 9 Connected
    Aware that the main point has been answered, but wanted to add my opinion as well. 
    Whilst I understand the fear that the system could get worse,  a change to going of the conditions on a given list  wouldn't make sense for the way the current DWP  wants PIP to work. If there was a  clear list of conditions which warranted  support and payment, then surely this would lead to those with those conditions being automatically accepted for PIP (similar to the way DLA was allocated based on the confirmation of the illness in question by a GP), and not allowing the DWP to do what they currently do with the awkwardly vague questions which are designed to insinuate that people do not require support?     I just don't see that happening cause it will hurt their bottom line. 


  • worried33
    worried33 Community member Posts: 492 Pioneering
    edited April 2020
    jacksprat said:
    @worried33 It would be worrying if everyone started to use the HMG covid-19 criteria as the only measure of vulnerability.  This was my fear when Sainsbury's told all customers that they must pass that test before being allowed any deliveries!

    As I am totally dependent on deliveries for food etc, I have not been shy about raising this as an issue with anyone who would listen [including BBC news].  My attempts to get deliveries were one-offs as all supermarkets were swamped with everyone being in covid-19 lockdown.

    I was not alone in raising this issue, and without explanation, I started to see Sainsbury's delivery slots [even though my neighbour sees none].  I don't trust this situation for the future.

    There should be a way for vulnerable customers to be identified, but I am not sure of the best way.  PIP would be a start, but is not sufficient as it excludes some illnesses.

    Allowing people to be self-identify as vulnerable is open to abuse.  Asking GPs to do it when they are about to be swamped by a lot of patiients with covid-19 is not wise.


    A system that can be abused is better than a closed system.

    I wasnt proposing a system that was entirely dependent on self declaration, but that self declaration merely used as a starting point.  Which is better than the "we will identify the vulnerable, tough luck if we dont".

    e.g  Not everyone may like PIP, but at least one can apply for it, imagine a replacement for PIP where you not allowed to apply, and just hope you on a list instead.  I actually even think PIP was a step forward from DLA, DLA over relied on diagnosis, even qualifying people without assessment on diagnosis alone, which is flawed, likewise they over relied on it to turn people down also.  Its a shame they moved forward on PIP how they assess, then backwards again on these new vulnerable lists.
  • jacksprat
    jacksprat Community member Posts: 21 Connected
    @worried33 I agree that self-identification is better than nothing.  Using PIP registration numbers would be better IF there was a way to verify that [say] a {post-code, PIP-reg} pair was valid without publishing the entire PIP database [protected by GDPR laws].
  • worried33
    worried33 Community member Posts: 492 Pioneering
    Its possible as they do that for the warm home discount scheme.

    However it looks like there is no movement to address this for food deliveries, the direction is set.  All supermarket leaders and MP's are silent when asked about it.   The question only remains if this nonsense will go away after the virus or if it will be used as a future means of categorising people.

    My local volunteer group who initially asked people if they needed help has also decided to only help people on the list, the government seem to be wanting everyone to use this list only.

    Statement from Asda below.  Nothing about the people not on the list with no support network, who on top of that may also be isolating as well as they have symptoms.

    We have been working closely with the DEFRA and some of our fellow supermarkets for the last couple of weeks to understand how to ensure essentials reach those with no support network. The data we’ve received from the UK Government has allowed us to email our customers to offer first access to delivery slots, ensuring they get what they need while they stay safe at home.

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