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Are we in the "shielded" group?

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    Are we in the "shielded" group?

    Do you have confirmation whether the government is including people with MND in its list?

    #2
    Hi Miranda
    I’m not entirely sure, we haven’t had anything from the Nhs to confirm this but I am treating my husband as though he is and not allowing anyone in and myself and our two daughters are not going anywhere. I think the best advice is to self isolate as much as is practically possible and to enlist help from family and friends to get shopping, prescriptions etc and leave them outside.
    I wouldn’t be surprised if MND patients get overlooked.
    Stay safe
    Jo

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      #3
      Yes anyone with MND and their carers are in the at risk group and should isolate for 12 weeks.

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

      Comment


        #4
        I suspect it’s a ‘Yes’, Miranda, but whilst you’re waiting for confirmation, this is an extract an NHS document and the full document is worth reading: https://www.england.nhs.uk/coronavir...tter_FINAL.pdf

        It outlines specific conditions, mostly cancers, but goes on to say the AMRC will identify other subsets of people to go into the shielding category, as will GPs, so it appears to go down to that level.

        [Extract follows]

        Group 1 We took the following steps when drawing up the list of patients who can be identified centrally by extracting relevant groups from national datasets: a) NHS England Clinical Reference Groups (groups of experts who advise the NHS on Direct Commissioning) were asked to consider which conditions would put patients at intermediate, high or very high risk of severe morbidity or mortality from COVID-19 b) Based on our current understanding and specialist and wider advice senior clinicians (NHSE, NHS Digital, PHE, CMO, DCMOs) categorised these conditions into the following high risk groups (see below)
        1. Solid organ transplant recipients
        2. People with specific cancers • People with cancer who are undergoing active chemotherapy or radical radiotherapy for lung cancer. People with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment • People having immunotherapy or other continuing antibody treatments for cancer • People having other targeted cancer treatments which can affect the immune system, such as protein kinase inhibitors or PARP inhibitors. • People who have had bone marrow or stem cell transplants in the last 6 months, or who are still taking immunosuppression drugs.
        3. People with severe respiratory conditions including all cystic fibrosis, severe asthma and severe COPD
        4. People with rare diseases and inborn errors of metabolism that significantly increase the risk of infections (such as SCID, homozygous sickle cell disease)
        5. People on immunosuppression therapies sufficient to significantly increase risk of infection 6. People who are pregnant with significant heart disease, congenital or acquired
        Group 2 There are some patients on this list who will be contacted by other routes due to limitations in national datasets. For example, Cancer Units will contact all patients in category 2; secondary care will contact most of the patients in category 5 via a cascade from the Royal College of Physicians and associated medical societies
        Group 3 In addition, the Academy of Medical Royal Colleges will ask its members to identify any other subgroups of patients they feel are at high risk, and will cascade templates to hospital specialists. We will ask clinicians who have identified these patients to let them know directly using a standard letter containing the information they need to commence shielding and access support. We will ask hospital specialists to inform the GP of the decision to include patients in the vulnerable group.
        Group 4 In addition, we will issue GPs with specific guidance around identification of high risk patients with complex / severe multimorbidity and ask the GP to contact these groups directly to recommend they are considered for inclusion in the shielding group. We accept that given this is a new and rapidly moving disease there are inevitable limitations in our methodology but have designed the most robust approach that was possible at pace with the aim of identifying the maximum number of vulnerable individuals in sufficient time to effectively shield this group.

        [End extract]

        So, if people with MND are not specically identied in Group 3, individuals can be added by their GP into Group 4.

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

        Comment


          #5
          Thank you xx

          Comment


            #6
            Many thanks for the detailed info, Ellie, and the link to the main document.

            My personal view is that the only prudent thing to do is to regard ourselves as part of that vulnerable shielded group.

            Given the respiratory weakness that usually accompanies MND and the problems over oxygen treatment, I was a bit surprised it wasn’t listed from the outset, along with, for example COPD.

            It would be nice if there could be a statement from, say, the MNDA or senior doctors from the major MND clinics to that effect.

            Stay safe folks!

            Doug

            Comment


              #7
              Doug, I'd say CF, COPD & asthma are mentioned as they are lung conditions - MND doesn't cause damage to our lungs themselves - I did see reference to neuromuscular diseases elsewhere, so I think they will be included in another Group.

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

              Comment


                #8
                Definitely YES, we are SHIELDED.

                Definitely YES, your carers MUST attend people with MND and SHIELD themselves and their children.
                Copyright Graham

                Comment


                  #9
                  Hi - confirmed with our MND nurse that we should be in the shielded group but sounds like they have had no information on ownership of the letters. She suggested self registering (registration open today) rather than waiting for a letter. I've just done this and it's very straight forward

                  https://www.gov.uk/coronavirus-extremely-vulnerable
                  Best

                  Robin

                  Diagnosed 05/2017 Familial ALS Limb onset

                  Comment


                    #10
                    Many thanks, Guy, for that very helpful link.

                    As you say, easy!

                    Doug

                    Comment


                      #11
                      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 Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      Comment


                        #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

                        Comment


                          #13
                          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

                          Comment


                            #14
                            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 Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            Comment


                              #15
                              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
                              I’m going to do this even if it kills me!

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