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    #16
    Originally posted by shelly21 View Post
    I just wish the was a sign poster. That you could email the problem and they notify the relevant department.
    Shelly, for me, that person is my Palliative Care Nurse - if I'm not getting anywhere, I need only email her and she'll kick butts. In fact, I know if I were to contact any hospice staff asking for help, be they the Physio, OT or Dietitian, they would contact their counterpart in the Community and get results.


    Originally posted by shelly21 View Post
    I would love to meet up with some at my health authority and speak out about mnd just so it improves things.
    Now, there's a challenge for you ๐Ÿ˜‰ What do you think??

    I know I would feel as dejected as you feel Shelly if I didn't have the Community support that I have. It makes me feel valued and that's what seems to be missing in your abyssmal care. ๐Ÿ˜Ÿ๐Ÿ˜Ÿ๐Ÿ˜ช

    I hope you got lots of gorgeous flowers ๐Ÿ˜˜๐Ÿ˜˜

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

    โ€‹

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      #17
      Hello Shelly
      you are not alone , fortunately for me Iโ€™m on a slow progression, so havenโ€™t needed much help, but as an example we recently acquired a neighbouring health authority Specialist Nurse for a 2-3 month trial, and it was great, however trial finished, report sent stating our HA did not follow any of the NICE guidelines. That was nearly 3 months ago and have heard nothing, accept itโ€™s being told itโ€™s under review.
      My only regular contact was physio, but in October was told by them nothing they could do so weโ€™re going to take me off their list for regular reviews, that was rescinded in November and now all I have is a 3 monthly phone call. GP is not interested.
      just to add to the fun, my consultant took early retirement, (no we werenโ€™t told) then he came back to work 1 day/week
      So, it is frustrating when we read how others seem to get all whistles and bells and the rest of us are left holding a rusty rattle.
      As I said Iโ€™m slow progression, so not so worried at the moment, but it doesnโ€™t bode well for the future, unless I move 3 miles into the neighbouring HA area, certainly is a postcode lottery

      s.
      As long as thereโ€™s golf and beer Iโ€™m happy

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        #18
        Like others I've found my hospice nurse the most effective link...she liaises with my GP..and if I have any issues I e-mail her and she follows it up. She actually popped in today just to see how I was post Christmas. Sorry if this is rubbing salt in the wounds but I do think the hospice services are amazing.
        It shouldn't be a postcode lottery however seems it is. I would say e-mail your local councillor or MP if not getting the care & support you definitely should have. Don't give up! xxx
        Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹

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          #19
          How about your local MNDA representative? When it looked like hubbies only option for care was a nursing home I phoned the MNDA helpline and they put me in touch with our local person. We'd met her several times but with everyone else involved had forgotten about her.
          She was very very proactive.
          Someone said on here taking care of everything is a full time job and it certainly is, I hope you get some help.

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            #20
            Originally posted by denise View Post
            Blimey ellie.

            We know this now perhaps the pros need to read it because it's not happening here.

            I don't think any of the services share. I'm not sure they know who does what.

            I'm starting to believe in the tooth fairy and the little people.

            ๐Ÿคฃ
            App to the rescue - (still in vapourware mode!)

            Love and cuddles xxxx
            Copyright Graham

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              #21
              Come on Graham we are dependent on you. Stop watching the ladies on YouTube and get it done.

              Lots of love and snuggles
              Xxxxx
              when i can think of something profound i will update this.

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                #22
                Morning all. I'm a bit more upbeat. I'm visiting my hospice today and starting physio with the in house physio. I so need it due to a frozen shoulder. They are going to get my partner involved so he can do the assisted stretches/range of movement. I've written off the palliative care nurse. She admits no experience in mnd and every time (4) i get referred to her she tells me contact my g p who then says I will have contact Birmingham mnd nurse for advise. I'm not allowed to go straight to the mnd nurse.

                Just plain bizarre in my logic.

                But I've got up early and put nice clothes and a touch of make up.

                I cannot let these departments rip my morale away.

                I really appreciate all your tips and support xx
                Diagnosed May 2021 bulbar onset als.

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                  #23
                  shelly21 you've really had a tough deal with services. I wonder if you have a Community Neuro Rehab Team in your area? I've found they do have expertise in MND...

                  Glad you're feeling more upbeat today...๐Ÿ’‹๐Ÿ’‹
                  Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹

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                    #24
                    My new lot start on Monday. I'll keep you updated with progress. ๐Ÿ‘๐Ÿ˜๐Ÿ˜˜๐Ÿ˜xx
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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                      #25
                      Glad you're feeling brighter today Shelly.

                      Originally posted by shelly21 View Post
                      I've written off the palliative care nurse. She admits no experience in mnd
                      Knowledge of MND is not a prerequisite, she just needs to be able to contact the OT, Physio or whoever, and tell them you need help for XYZ.

                      A substantial number of HCPs won't have much, or any, first hand experience of dealing with people who have an MND, but that doesn't mean they can't help.

                      That Palliative Care Nurse Specialist chose the wrong career... xx
                      โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      โ€‹

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