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Make sure the government hears your experiences

Adrian_ScopeAdrian_Scope Administrator Posts: 7,551 Scope community team

Scope is here for you during this difficult time and we want you to know your voice is an important one and must be heard. Coronavirus has drastically changed all our lives. It’s vital that the Government, businesses, and the public don’t forget disabled people.

Share your experiences with us, and we’ll make sure Government hears them.

Senior Community Partner
Scope

If you have a few minutes to spare, we'd appreciate your feedback on our online community.

Replies

  • jackspratjacksprat Member Posts: 21 Connected
    @Adrian_Scope:  your link "hangs"  for a very long time.
  • Bridget14Bridget14 Member Posts: 58 Courageous
    I agree totally especially now.
    I wrote to a supermarket chain this week to make them aware that many vulnerable disabled are falling through the net on the list provided in the hope they will ask their stores to be more pro active in looking out for these people by working with local organisations. 
    Also written H  & S Executive regarding working conditions of the people in distribution centres were the keep your distance rules not being kept. I know people in vulnerable category who are being put at risk in these areas.
    It is important we do raise any concerns. 
  • skullcapskullcap Member - under moderation Posts: 182 Courageous
    Bridget14 said:
    I agree totally especially now.
    I wrote to a supermarket chain this week to make them aware that many vulnerable disabled are falling through the net on the list provided in the hope they will ask their stores to be more pro active in looking out for these people by working with local organisations. 
    You at high risk have to be extremely careful when considering that. The 'list' from the NHS is said to contain the names and contact details of people that they have judged to be at high risk. Then if it is found that the list is short of a few people the Gov.uk application will need to be filled in. They will pass on the details of these 'missing' people to the NHS who will check it out. If they have been genuinely missed than they will be added. Those found to be trying it on will be told to go away.
    So in reality no one who is genuinely at high risk will be left out in the cold - they will not fall through the net.

    Suggesting that the 'list' be made bigger with more people on it will inevitably result in the argument 'my disability is worse than yours'.
    I have yet to find anyone that has difficulty in either having shopping delivered by a supermarket or by one of the many charitable hubs that are now operating.

    I had one such 'hub' contact me yesterday only because the GP practice had passed on details of all over 70 to AgeUK. They have over 200 volunteers who will deliver shopping/newspaper and even your medication.

    As for supermarkets I logged onto Tesco last night and straight away I had both the 11th & 25th dates offered to me for a home delivery.
    I am not on the 'list'. 
     
  • underdiagnosedunderdiagnosed Member Posts: 24 Courageous
    I am having difficulty receiving care. My carer is self employed, I pay him privately out of my PIPs as my local authority are unsympathetic and unhelpful, even now that I requested emergency cover. My carer is currently off sick with mild symptoms which may or may not be coronavirus. Not being NHS I expect there is little hope of him being tested - if it was negative he could return to work. It took me all afternoon just to find someone who was willing to empty my bin. I also need assistance with cooking, laundry and cleaning, none of this is being provided at present and I don't know when this will resume. This is putting a strain on my health. I have friends who are currently shopping for me. I am ESA support group and completely housebound, but I am not on a government list as vulnerable, which means I cannot get a supermarket to deliver essentials.
  • Bridget14Bridget14 Member Posts: 58 Courageous
    skullcap I was missed off the highest risk list despite having more than 2 of the high risk vulnerable eligibility. On contacting my GP  was advised I fell into this bracket, and not the only one. GP's had no input in the list compiled. Therefore if I had not registered I would have fallen through the net which is why people are advised strongly to register on gov.uk. Being home for 12 weeks is going to be hard for most and any steps which can be taken to help not only those in the 12 week but all vulnerable access groceries and medication. 
    Fully appreciate Age Uk and other organisations are doing wonderful job at this time however there are people who will be missed. Companies need to be made aware there is no such thing as a fallible list and we have a duty to try to help people who may be missed out. 
    It is not a competition  'my disability is worse than yours' we all know disability comes in many forms and should respect each others disability. In the present climate it is helping in anyway we can. 



  • Bridget14Bridget14 Member Posts: 58 Courageous
    I only mentioned I have 2 conditions to highlight that people falling through as an example.
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    edited April 5
    @Bridget14, using the clubcard for Tesco and other cards for each other supermarket they have a great amount of detail about their customers and the situations they experience. Having been housebound for a couple of years I have had almost weekly deliveries and on every occasion the drivers brought the stuff in and took it out of the baskets for me. During that time I have been to the shop about 5 times when one of my kids helped me, why have they not called me themselves to check? I did call them and was told that the drivers would not bring the stuff in and consequently I would have to lie down to reach over a big step and then carry small amounts back and forth many times when my real ability is one trip to the door and back then recover for an hour or so. I have no carers at the moment because I am close to being inside the upper savings limit and am terrified of the hammering I will get from them while they try to prevent me going back on benefits. If I don't get it back then the money runs out in a few months and I presumably become homeless. I can see the arguments going on for months as they try to prove I have made myself "poor".

    As for being on the list @skullcap..... it is highly unlikely any doctor at the surgery I am stuck with have even bothered to go through records to add people to the list. After all no doctor ever sees the many 111, hospital, paramedic and police safety reports that they have received over the past few years, receptionists simply file them away so as not to bother or over-stress the GP's.

    I am presuming here that I am not on the list as I have received no communications about it and when I last looked the few items of the many possible items I usually buy could only be delivered more than 3 weeks later. Not much help when I order weekly.

    Actually I have made 2 suicide attempts in the last 5 or 6 weeks due to the additional suffering and stress I am being subjected too currently. Mental Health said they would take 3 actions, none of which have been done, and the GP simply called me then sent a complete stranger (GP) to visit me, after the first one, who had no idea what was wrong with me and hadn't bothered to read any of their extensive records they complain about me having. She then went on to explain why I couldn't be medicated properly due to side-effects I didn't get with 5 times more dosage than I am asking for now. She couldn't actually understand what was wrong with me as she had never heard of it before. She ignored both my request for a medication revue (that makes it 4 doctors who have ignored my request now) and also she ignored my request to change my prescription back to what it should be since they changed it (for the 4th time) simply to save money and substituted a medication I had many problems with. All they ever suggest is to refer me to the Pain Clinic who I was with for 5 years a decade ago and who have previously refused 3 referrals on the grounds that they have done everything they can for me ad it's the GP's job to help me manage the pain. During the second attempt the 111 service said that the dosage I had taken was lethal (probably would be to most but my system is extremely resilient) and I needed a "Blues and two's" ambulance which took 14 hours to arrive 0(had it actually been lethal it would have taken 3 to 4 hours to do it's job)  during which time I received 3 calls apologizing for the delay and checking whether I had collapsed or not so they could really send the ambulance to pretend they had tried to save me. Then, once they arrived, the paramedic started setting up his equipment when the middle aged driver said it was too smokey and dangerous for her and they packed up and left immediately without checking anything. Isn't the NHS wonderful?

    I haven't actually checked whether I should be on the list or not as there seemed little point as I would have to wait 2 or more weeks to speak to yet another doctor who has no idea what is wrong or how to treat it. I do know that I should be in wheelchair accessible accommodation because I have a Social Care report stating I should. I cannot ofc move because my jobsworth Housing Officer states there is no alternative to the standard process of applying, bidding, waiting and then viewing before I can be moved. Even when I explained that I am HOUSEBOUND and therefore unable to view and without viewing I simply get removed from the list. The whole system seems to be staffed with intellectually subnormal idiots who cannot have a conversation without just repeating over and over that there is only one way. The Housing Officer was so dumb that he stated that their rules aren't just rules but are actually laws passed in Parliament. When I explained that each Council develops their own set of rules based on someone's interpretation of the laws. He then had the cheek to tell me off quite vociferously for wasting his time and hung up after I explained his character flaws politely.

    Apologies for waffling off the subject a bit but whenever I try to discuss things at the moment I keep re-iterating the major list of problems I have right now.

    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.
  • Adrian_ScopeAdrian_Scope Administrator Posts: 7,551 Scope community team
    Thank you all for sharing your experiences. Please make sure you're sharing these through the link in the original post as it's vital the government hear from you!

    @Topkitten: I know we've mentioned this before, but while we know signposting you to Samaritans (116 123 or [email protected]) or Mind's resources on coping with suicidal thoughts might not be beneficial to you, we would be willing to make a social care referral on your behalf if it's something you'd like us to pursue. Please get in touch with us at [email protected] and if you feel like you might be in immediate danger, contact the emergency services.
    Senior Community Partner
    Scope

    If you have a few minutes to spare, we'd appreciate your feedback on our online community.
  • feirfeir Member Posts: 388 Pioneering
    I looked at the list and it's basically immune compromised people who can get help. I can't walk but am not on the vulnerable list so can't get any shopping delivered.

    Whoohoo,any of us who have been shoved onto UC can put in a claim for 'new style' ESA. I'm gonna do that right now. we get paid fortnightly instead of monthly. :smile:
  • Bridget14Bridget14 Member Posts: 58 Courageous
    feir help is out there for all vulnerable regardless of disability please check the list of organisations offering help to people with shopping, (several have been published on Scope) through these challenging times.
    A list is one list in many. A person is a person and for any vulnerability help is put there. 
  • Bridget14Bridget14 Member Posts: 58 Courageous
    Topkitten
    So sorry to hear how you have felt so desperate that you have twice tried to take your life. Please reach out to some of the charities mentioned by Adrian_Scope. There will be someone somewhere willing to fight 
     your corner. 
    I am lucky I have been with the same practice for over 40 years and have heard of problems people are experiencing with othe GP practices.
    Re: housing have you contacted housing ombudsman or disability rights groups? 
    When people visit do you have a print out of your disability to hand over to them so they can't claim ignorance whilst at the same time helping them understand. 
    Regards the delivery this is countrywide due to companies having an obligation to their staff and customers alike to keep them all safe from Covid 19. 
    You mentioned your children any chance you can work something out with them and perhaps local charity to help bring items in for you. I get tired very quickly and know what a frustratiom this is.
    Each day brings new challenges and I hope some of yours can be eased by help. 
  • feirfeir Member Posts: 388 Pioneering
    Bridget14 said:
    feir help is out there for all vulnerable regardless of disability please check the list of organisations offering help to people with shopping, (several have been published on Scope) through these challenging times.
    A list is one list in many. A person is a person and for any vulnerability help is put there. 

    Thanks. An ex came round to see his kids today and told me people on his streets have signs up offering to help, probably will take one up on it if i ever get paid, think there is a bit of delay in payments now as i haven't got paid carers and was told this benefit wouldn't get stopped.
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    edited April 7
    @Adrian_Scope I appreciate your concerns but there is nothing that can be done apart from me moving out of the area I am now in and I am no longer healthy enough to do so.

    Samaritans - I have called them before many times but their charter dictates that they can take no action whatsoever, not even if you confess to having taken a massive O/d.

    Mind - They called me a couple of months ago and asked why I stopped calling them. I explained that they had stated there was nothing they could do for me as my main problem is a complete lack of support with my physical issues. I recently called them a couple of times and guess what? Ofc they said again there is nothing they can do for me apart from referring me for Advocacy and a couple of other things. They haven't done any of them it was all total guff.

    Social Care - About the worst of the lot really. 3 years ago a young trainee made some mistakes that should have cost her the job. Instead she has someone protecting her higher up because instead they assessed me in secret (illegal), decided I no longer needed help and took it away (I get progressively worse never improve)and then, when I attempted to complain to my MP I got shoveled back to Social Care's internal complaints system who whitewashed the whole thing. Since that time I have been referred back to them once or twice by Scope, 8 times by Police after a safety check, 30 or so times by ambulance crews, 5 times by MH in the hospital, once by self referral and none at all by my GP's. Any more is just a total waste of time because I have supposedly been assessed twice during the 3 years and on neither occasion did I receive a copy of the report (they must provide this to me by law) so again it was done in secret and on both occasions they stated I didn't need help.

    Pain Clinic - after going through 5 years of their help initially any further referrals get returned and refused as "There is nothing else they can do to help me". This is from both the Clinic in the hospital and also since they moved it into the community.

    Hospital Pain Team - My last discussion I was informed there was nothing I could do except to manage with the medications I have and do the best I can.

    Orthopedics - 3 years ago (having been on the waiting list for surgery for 3 years) I was put back on the list (I missed 2 surgery dates due to cancellation) by the Senior Consultant for micro-surgery. When I contacted PALS asking to go back on the short list (6 months) instead of the standard one (2 years) I was instead given a second opinion. After the first meeting when I had heard him muttering about bone growth) I was given a CT Scan and Neurological tests. When I saw this guy again he was rude, very short with me, hadn't reminded himself of my case by reading my notes and shouted at me when I tried to argue about his decision. My surgery was taken away simply because the Senior Consultant had put me down for a surgery that could not be performed. Since then I have seen 2 junior Orthopedics doctors who both said "Nothing wrong here" and now they refuse ALL referrals and refuse to see or speak to me when I am in hospital. I have tried 3 times since to raise a complaint with PALS but they wont talk to me either.

    GP Surgery - In the last 4 or 5 years I have been registered with 6 different surgeries and spoken with 50 or more GP's. None of them knew what I had or what to do about it and at every single surgery I have reached a point where they have refused to prescribe sufficient pain killers even though they are available. They make such decisions without reading through my notes or talking to me. I have had precisely ONE GP who really tried to help for a few months but she moved out of area. I have made a dozen or so complaints to NHS England and on every occasion they forwarded the complaint back to the surgery (who did precisely nothing) and refused to invoke the proper complaints procedure.

    Occupational Therapy - Having decided 3 years ago that I needed to move elsewhere I contacted my GP and asked for an Occupational Therapy Assessment. 18 months later I was still waiting as they had referred me 4 times for treatment rather than assessment. Finally the OT team at the hospital referred me correctly but the person they sent to assess me could barely speak and understand English and had no experience whatsoever of wheelchairs or what a property needed to be able to use one. As OT comes under Social Care I complained 3 or 4 times until finally (further 6 months later) I received a corrected and usable report. However, 2 years ago during this process I was declared Housebound and cannot follow normal moving procedures.

    Council housing - I have been trying to request a move into more suitable accommodation for almost 3 years now. Initially I was refused due to not having a suitable OT report and now am told that if I do not view the property when I finally get offered one then I will not be allowed to have it. Being housebound I cannot view anywhere without taking an O/d to do so. In desperation I contacted them again recently and asked about emergency procedures (which MUST exist) and was told my Housing Officer would call me in a couple of days to discuss. After 2 weeks I rang again and explained but was told that what I said was done and what he had said was done differed greatly. Basically he lied on his reports to cover up his complete incompetence. The day after this call and after saying I would look into making a complaint the Officer rang me, shouted at me and had the cheek to tell me off for "wasting their time". He also stated that the Council Rules were in fact Parliament Laws (complete tosh), that there was not now and never had been an emergency procedure (more tosh as I knew someone who used it) and then he threatened to take further action against me if I continued being difficult and abusive (I never even raised my voice and certainly never swore). This final item was because I politely told him he obviously had no idea how to do his job properly.

    The main problem here is that I have a completely unknown and unique set of problems. No doctor, not even one in the PC has ever come across a case like it. My original diagnosis is incorrect. I was told surgery was impossible and too dangerous even though Scoliosis surgery would have worked and is done on teenagers. Most doctors misdiagnose me even in A&E and I have had many disagreements with arrogant and presumably incompetent doctors and physiotherapists who never even bother to read my notes because "they are too extensive and complicated". Almost every doctor refuses to treat me properly because there is no standard treatment script for them to follow and they wont work it out for themselves because they are terrified of making mistakes. Sooner or later every single group or department I have dealt with has made a mistake then gone to extreme efforts to cover it up leaving me high and dry with no help or support at all. I have been suffering suicidal thoughts for almost 6 years simply due to the idiocy described here and from being bounced back and forth from one group or another with nothing being done in between.

    In the last 14 years I have gone from being an apparently healthy, sporty and popular man and good father to an ignored and crippled sub-human deserving of no ones help or support. My death is assured from either neglect or medication or something similar as it is completely impossible to function even marginally in my present state let alone what I continue to degenerate into. And people keep telling me that one more referral will make all the difference and do not understand me when I say that it's obviously a complete waste of time. However, the only way to get people to understand is to go through massive descriptions like this and even then they shake their head and say "it's not possible because the system works". It doesn't, not for me anyway.

    Sorry to bore everyone silly but even if I was to follow some of the advice (like contacting Ombudsmen) then who and how many would I have to contact and why wouldn't they just sit back and join ALL the others protecting a system that simply doesn't work for someone like me, especially when almost every group has made it personal and has gone into self protection mode? I did try contacting a local newspaper and 3 major ones but none of them even replied to ask for details let alone make a story out of it because no one really wants to know that, for some, the system doesn't work at all!

    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.
  • Maggie_PieMaggie_Pie Member Posts: 22 Courageous
    skullcap said:
    "The 'list' from the NHS is said to contain the names and contact details of people that they have judged to be at high risk. Then if it is found that the list is short of a few people the Gov.uk application will need to be filled in. They will pass on the details of these 'missing' people to the NHS who will check it out. ...
    "So in reality no one who is genuinely at high risk will be left out in the cold - they will not fall through the net. ...
    "Suggesting that the 'list' be made bigger with more people on it will inevitably result in the argument 'my disability is worse than yours'."

    I'd like to challenge you on what you wrote, Skullcap.  I have in the past obtained a doctor's letter when flying, but in general I avoid medical involvement.  Nevertheless, I am registered disabled and am in legitimate possession of a blue badge and disabled bus pass.  Clearly I don't accept that the clinical list covers everyone.  Accordingly, there are people at risk of falling through the net.  As for the argument "my disability is worse than yours," that had not occurred to me and probably hasn't to most of us.

  • Katy44Katy44 Member Posts: 4 Listener
    Unfortunately I don’t think the government will listen or care beyond a few token gestures to make it look like they are listening and caring. I know that sounds cynical but unfortunately the truth is not always positive. However I believe there are enough genuinely caring people out there to stop us completely falling. It’s just a shame that the government a) doesn’t seem to have many of them and b) will probably try and take most of the credit. 

    If it weren’t for my friends family and church I would have been absolutely screwed especially since I am even less mobile than usual (wheelchair bound in general anyway) Having fractured my shoulder and it now not healing correctly. 
  • feirfeir Member Posts: 388 Pioneering
    I applied for UC on march 1st, still not been paid anything. I need a fit note apparently but my GP isn't doing appoinments for them.
    I spent my rent money by accident thinking it was my UC as it is past due, well i think i have coz i am now 4 weeks in arrears for rent. They shouldn't make it hard for people with mental illness because i struggle cognitively now. Pretty sure if i don't find help i'm going to have a breakdown so now i am going to be a burden on the mental health team coz they will have to help me out with something is hould be able to do myself.
  • underdiagnosedunderdiagnosed Member Posts: 24 Courageous
    The latest from my carer, who is self employed and did return from sick leave, is that due to legal requirements he was unaware of he has to suspend all care to all persons immediately or risk prosecution. He says it will take at least 10 weeks to resolve. I am now having to phone around to find an alternative care provider. Last time I had 2 weeks without care my condition deteriorated so much that I could barely make a cup of tea by the end of it. I'm lucky I have good friends and live in a supportive community and people will do what they can to help, but no one can enter my home due to coronavirus restrictions. As a wheelchair user who lives alone and cannot go outside without assistance I don't know when the next time I'll be able to go outside is either.
  • StayceStayce Member Posts: 344 Pioneering
    edited April 25
    Hi @Adrian_Scope Great that you are capturing this. I’m concern that we (those of us in the vulnerable and extremely vulnerable groups) will lose our patient autonomy to make decisions about our own health, particularly when lockdown restrictions start to be lifted
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    This constantly stupid lockdown (which only delays the inevitable) is causing massive internet problems for all providers who simply do not have the capability of coping with the current internet usage. It appears though that my ISP (Virgin) is worse than most and it is severely affecting my health. Already in "lockdown" for a couple of years I cannot have deliveries of food as I cannot carry it to the kitchen and have no help (financial reasons) so I have to massively O/D to go out for brief periods shopping. I suppose that at least I can sort of cope with the pain and suffering it causes. However, what I am not coping with is the constant disconnections and loss of service that the overloads are causing. I just wish that lots of stupid people using massively stupid loads of bandwidth are the direct cause of the poor (awfully poor) service that those of us with no choice at all are suffering. My mental health is taking a total nosedive because I nave no choice but to be online or watching a dreadfully broken up TV signal. Not only that but the increasingly debilitating pain is pushing mu blood pressure into the stratosphere, as is my continuing anger at the constant cut-offs of service. My only hope is that the added pressure is going to cause an embolism and kill me soon because I simply cannot keep going on just coffee's now and again.

    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.
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