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Thread: Are we in the "shielded" group?

  1. #11
    Forum Member Ellie's Avatar
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    Posted on the MNDA website today:

    "The MND Association is extremely concerned to see that people with MND have not been included in the Government’s list of extremely vulnerable persons in their guidance on shielding and protecting vulnerable persons from Covid-19. This despite MND being included in the previously published guidance on social distancing.

    We believe that this has very concerning implications for access to critical care for people with motor neurone disease and we are calling on the Government to define people with MND as being extremely vulnerable as a matter of urgency."

    I don't know how this relates to either registering as an extremly vulnerable person or if a GP's input can still put a person with MND into the shielded group - perhaps MND Connect can clarify??
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  2. #12
    It's good to see this, indicating the MNDA's level of concern.

    By "calling on the Government" I hope they mean they are in direct contact with whoever is controlling the register and getting MND added as a matter of urgency.

    The comment about being previously included in guidance is odd, but everything about Covid19 arrangements changes daily so lets hope we are included soon.

    I heard yesterday that my MND physio and her colleagues are putting forward all their patients for inclusion.

    Doug

  3. #13
    Forum Member Sueb's Avatar
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    Our MND phoned and suggested we register ourselves on the government vulnerable list and sent us the link. I did this for Steve last.

    Steve as had another infection and been out of hospital for just over 5 weeks. His breathing is more compromised and needs his mask for periods in the day, especially evenings. It has been a difficult few weeks and now this.

    Sue

  4. #14
    Forum Member Ellie's Avatar
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    Sorry to hear of Steve's woes, Sue - given the current situation, if you've even the slightest concern his chest infection may be back, contact his GP.

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

  5. #15
    Forum Member Barry52's Avatar
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    Hi Sue,

    Please give Steve my best wishes and I am sorry to hear he has another infection. It is a great shame we can no longer meet at the Nottingham branch but we held a video conference tonight with the committee and we are hoping to do a regular bulletin with news of what people are doing to occupy their time.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  6. #16
    Forum Member Lynne K's Avatar
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    That is good Doug. But the list already states that it’s their for ‘other rare diseases.’ But stating MND specifically would be better. I registered a few days ago. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  7. #17
    Forum Member Barry52's Avatar
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    Hi all,

    Just received this.


    Dear Barry,

    We are deeply concerned that people with MND have not been included in the Government’s list of extremely vulnerable persons in their guidance on shielding and protecting vulnerable persons from Covid19.

    If you are on Twitter, we need your help to ask the Health Secretary, Matt Hancock MP, to change this as a matter of urgency.


    Yesterday, Sally Light, Chief Executive of the MND Association, took action by writing a letter to Matt Hancock MP. You can read the letter here.

    The omission of motor neurone disease from the list is causing a great deal of concern and uncertainty among our community. People with MND are extremely vulnerable to the Covid19 virus, and we are advising everyone with MND to register as a vulnerable patient.

    Please do participate in the action if you have Twitter and share it with colleagues, family and friends. The more people there are asking for this the more likely we are to be heard.

    Thanks for all you do,

    Fran

    Senior Campaigns Advisor
    Iím going to do this even if it kills me!

  8. #18
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    Info: We got our 'sheilding' letter from the Scottish Government last week, which stated shielding is required until 18th June for us and you can opt in for a free weekly grocery package if you are unable to get to do a food shop.

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