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  • Doug Carpenter
    replied
    Well, you tried.....

    Doug

    Leave a comment:


  • Admin_MND
    replied
    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/

    Leave a comment:


  • Graham
    replied
    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

    Leave a comment:


  • Barry52
    replied
    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

    Leave a comment:


  • Graham
    replied
    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'.

    Leave a comment:


  • Barry52
    replied
    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

    Leave a comment:


  • Barry52
    replied
    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.

    Leave a comment:


  • Ellie
    replied
    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

    Leave a comment:


  • Graham
    replied
    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.

    Leave a comment:


  • Admin_MND
    replied
    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.

    Leave a comment:


  • Doug Carpenter
    replied
    Also had the email.

    Doug

    Leave a comment:


  • Barry52
    replied
    Hi Miranda,

    I received the same email today so I guess that the government updated list has been sent to retailers. You may have received a letter from your GP confirming you are at extreme risk should you catch covid 19.

    Best wishes,
    Barry

    Leave a comment:


  • miranda
    replied
    I have,just received this email from Waitrose. So presumably it’s because MND is now recognised? Or it could be my age (over 70)?

    We’re writing to let you know that from today we are offering you priority access to both our home delivery and shop collection services.

    This is because the Government has informed us you might find it easier to have your shopping delivered, or prepared for you in advance.

    Leave a comment:


  • Lynne K
    replied
    I didn’t see the news about Terry’s passing until just now. What a shock. He was so helpful to all of us and always upbeat, so will be sorely missed. RIP Terry.

    Leave a comment:


  • philipb
    replied
    I am very saddened to hear that Terry has left us. He was always so helpful to members of the forum, particularly new ones who were going through the anguish of being diagnosed with mnd. He will be sorely missed. RIP Terry and thank you for all your kindness and support. Philip and Carol

    Leave a comment:

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