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    #61
    Good afternoon

    I've also tried to register - my breathing is not too bad at the moment but I am being very careful given I also have some suggestion troubles with my heart - and have not heard a dicky bird - not even email confirming that they've had my request.

    Current government clearly has no experience of customer service!
    Warmly


    Andy

    ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

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      #62
      HI Barry and Lynne, I registered too online and e mailed my MP but no replies, as yet, surprisingly!

      Despite being a regular online customer we have had to wait two weeks for our Morrisons delivery and we cant get another one for three weeks. To get that my husband waited patiently until midnight when they had new slots. Luckily we have friends and family delivering supplies and prescriptions but I really feel for people who haven't because we are not registered as vulnerable... its unbelievable!

      There are lots of very generous and kind people offering to help and local butchers and grocers are offering deliveries. So is our local wine shop, although I cant decide if this is an essential item !

      Hope everyone stays safe and as well as possible,
      Love Debbie x

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        #63
        Hi Debbie,

        Yes I find it amazing we can get wine delivered (I believe it’s essential to keep our spirits up) but I can’t get milk, bread and other essential food items. Fortunately I have a well stocked freezer and larder but I have no fruit or vegetables so my diet is protein rich.

        Barry x
        I’m going to do this even if it kills me!

        Comment


          #64
          We have been lucky with online shopping.. I have always shopped online with Sainsbury’s in the last year because of Steve keep getting infections and not being able to get out. A few weeks ago I got an email to say we could get slots as being vulnerable. This was before registering on the government website. Don’t know how they know, maybe all the paper hankies and kitchen roll I buy to deal with secretions!! We have been able to get slots every week luckily. I’m just hope it doesn’t stop as they are going to use the list from the government to allot spaces and as yet we haven’t had any communication to say we are on it.

          Sue

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            #65
            we too are struggling with delivery or indeed collection slot. got a tesco collection for this week but thats it. we ordered a box of basics from "Farm to Fork", its great and was delivered in 2 days.

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              #66
              Just received this email

              Hello,

              You registered as clinically extremely vulnerable, but had not received a letter from the NHS to confirm this. We’ll share your details with the NHS.

              If the NHS defines you as clinically extremely vulnerable, the NHS will contact you. Your GP will be informed.

              If you told us you need help getting food and supplies, but you are not on the clinically extremely vulnerable list, we’ll share your details with supermarkets. They may be able to help.

              If you need support urgently, please contact your local authority.

              For the latest information, visit https://www.gov.uk/coronavirus

              GOV.​UK coronavirus support

              Comment


                #67
                Online Supermarket Shopping

                Given that home delivery slots are almost impossible to secure, consider trying to get a "Click & Collect" slot, which are marginally easier to get than home delivery.

                I know someone needs to go fetch it but it's heaps better than queueing outside then risking the high risk in-store environment.

                Also, don't forget to wash your hands after handling the crates and wipe all tinned products and packets, then wash your hands again!!

                Love Ellie.
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
                Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                Comment


                  #68
                  Thanks for that update Miranda.

                  Stay safe.

                  Love Ellie.
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
                  Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                  Comment


                    #69
                    Hi Miranda,

                    I received the same message via a text. It may have resulted from a phone call my wife made to my GP.

                    Ellie,

                    I tried the click and collect with Sainsburys and the first slot was 3 weeks away. If this situation continues for 12 weeks or more then we will be in trouble.

                    Love,
                    Barry
                    I’m going to do this even if it kills me!

                    Comment


                      #70
                      Oh wow, Barry - I hope you booked a slot for 3 weeks time?

                      And no harm to book future slots on an ongoing basis as soon as those dates are released - early bird catches the worm and all that! You can always cancel or change it if more become available or if supermarkets get access to 'the list' and you have priority access to slots.

                      Stay safe my friend.

                      Love Ellie.
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
                      Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                      Comment


                        #71
                        Our shopping is left in bags outside the door now. I use gloves to handle everything and clean everything and put the bags in the outside bin.
                        Hope you manage to get slots soon.. I found it better to put a few things in your basket checkout to get your slot then go Back in day before to put in the things you had forgotten..

                        I got the same text this morning after registering Steve.

                        Sue

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                          #72
                          My husband is washing everything as it comes in too, Sue. Hope Steve is doing OK.

                          I got the same text this morning. I have a relative who works for a supermarket at their head office . He said they had not received any information from the government about allocating priority slots for delivery. If they did it could be a data protection issue if they were given access to medical details so they would have to contact people for consent.

                          I'm taking your advice seriously Barry about wine being essential supplies so I no longer feel guilty about adding a bottle ( or two ) to our shopping.

                          Hoping everyone stays safe and well and is able to get everything they need.
                          Love Debbie x

                          Comment


                            #73
                            Hi all,

                            We just wanted to let you know that we have updated our MND and coronavirus webpage https://www.mndassociation.org/mnd-and-coronavirus/

                            We have added a video from our expert panel who were answering a range of specific questions and concerns people living with MND have asked us about the impact of coronavirus on them, their condition and their care. You can watch the full video here https://youtu.be/OM2BqdC4N34 .
                            Our working hours are Monday to Friday 8:30am until 5pm

                            Comment


                              #74
                              I have received an email from Asda saying they have me registered as a vulnerable person. I have placed an order but delivery is Saturday 18th April. Meanwhile a local butcher I use has started delivery of essentials so I am receiving eggs, bread and milk on Wednesday. I hope we all remember the local businesses that come to our aid when this is all over.

                              Barry
                              I’m going to do this even if it kills me!

                              Comment


                                #75
                                I've just received the following text from UK Gov -

                                NHS Coronavirus Service: Your condition means you are at high risk of severe illness if you catch Coronavirus. Please remain at home for 12 weeks unless a healthcare professional tells you to leave. You will get a letter from the NHS to confirm this.

                                Support is available for you if you need it to get help with getting food and basic care. Please complete this short form to tell us whether you need this: www.gov.uk/coronavirus-extremely-vulnerable.

                                If you cannot sign up on the website, call us on 0800 028 8327.

                                The NHS is still here for you. You will get the care you need, but it is more likely to be via phone or online.

                                Comment

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