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    #91
    Hi all,

    We have this afternoon launched the next part of our campaign to #GetMNDonTheList with our selfie campaign.

    Find out more and get involved here https://www.mndassociation.org/get-i...d-on-the-list/.

    Thank you for your support.
    Our working hours are Monday to Friday 8:30am until 5pm

    Comment


      #92
      We just need a COMPETENT Government that can organise minimum 100,000 tests per day as promised.

      Iain Duncan Smith MP said we have 'The capacity' to do 100,000 test in his weasel words yesterday, as he moves the goalposts.

      People are rightly sick of this Tory government.
      Copyright Graham

      Comment


        #93
        This related article is on the BBC website today https://www.bbc.com/news/health-5233...hT90cbbzpF0FHs


        The quote from DHSC spokesperson says it all

        "A spokesman for the Department of Health and Social Care told the BBC that patients with MND are being assessed on an individual basis."Expert doctors have identified specific medical conditions that put someone at greatest risk of severe illness from Covid-19, meaning they're clinically extremely vulnerable and need to shield.
        "The list will continue to be reviewed, and doctors are identifying additional people who need to shield depending on their individual circumstances."
        Those who are not classified as "extremely vulnerable", but have underlying health conditions, are still advised to adhere to stay-at-home guidelines, he added"

        An uphill struggle
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        Comment


          #94
          Hi Ellie,

          This is an absolute scandal to make people with MND go through an assessment of need. Haven’t we gone through enough assessments in our journey with this disease? Written off again.
          I’m going to do this even if it kills me!

          Comment


            #95
            Like buses they all come together.

            Waited 3 weeks for a priority delivery slot and I now have offers from Asda, Sainsburys and Waitrose having finally been classed as extremely vulnerable. I can’t and won’t use all three but surely if they shared data then that would free up resources for others in need.

            I also received a follow up email today from my local council offering me an essential food parcel. Obviously I declined their offer but thanked them for their concern.

            I hope everyone is managing to occupy their time during lockdown. Personally I can’t wait to go out on my scooter but I think it’s classed as none essential travel.

            Stay safe.

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

            Comment


              #96
              The pneumonia I had kept returning and so after 5 courses of antibiotics, I have sought my MP's support and got put on stronger antibiotics.

              I would like to be tested for covid-19 but I can 'dream-on lad'.
              Copyright Graham

              Comment


                #97
                Hi Graham,

                I sorry to hear that you are still suffering from pneumonia repeatedly. I hope the stronger antibiotics help. In what way does your MP help? In the past when I have contacted my MP about issues related to MND I would get a standard reply which would make platitudes about how the government is supporting our cause. Now that he is a minister of state he doesn’t have the courtesy of replying.

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

                Comment


                  #98
                  Hi Barry,

                  I'm sorry to hear that your MP is not helping you. I rely heavily on the office of Rebecca Long-Bailey MP and I would really struggle otherwise.

                  On this occasion, the home visit doctor attended over 24 hours after I asked my carer to call 111. As the home visit had been up to 48 hours late in recent weeks, I kept 3 antibiotics over just in case. When the doctor did attend, I had just used my 3rd and last antibiotic, however I had nipped the pneumonia in the bud again thankfully. It was obvious doctor was not impressed. Self medicating, no pneumonia, an obvious hypochondriac. Doctor refused to give me more.

                  I wrote a letter to my GP, copied to MP, explaining my actions. My GP decided to give me stronger antibiotics.

                  You can always vote for a better MP.

                  Best wishes
                  Graham
                  Copyright Graham

                  Comment


                    #99
                    Hi all,

                    We have a new update on our #GetMNDonTheList campaign. Sadly it's not exactly the answer we wanted, but we want to thank everyone who took part in the selfie action and supported the campaign.

                    https://www.mndassociation.org/get-i...lnerable-list/
                    Our working hours are Monday to Friday 8:30am until 5pm

                    Comment


                      Well, you tried.....

                      Doug

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