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    Emotions running high

    So its the eve of the year diagnosis day. I had a phone call today from the mnda grant department. I recently asked my occupational therapist to apply for the adaptions grant. It being my first of this kind of grant I read the amount of £1500. I needed a low threshold door and ramp re getting out of the house in my wheelchair. We choose the cheapest option so that we thought we would have a more realistic chance of being awarded the full grant.

    So I asked my OT too apply for £1450. I found out today she didn't apply for that. she only applied the £1090 for the door. Then the mnda offered £570 and asked the OT if we agreed to this, expecting her to seek our thoughts. That didn't happen.

    So used our overdraft too pay out £1450 and to receive a third was a bitter blow if I'm honest.

    I'm totally fed up of the pathetic support we have received. I don't mean to sound ungrateful but I honestly thought that after paying for our own wet room, bedroom and armchair that we would get good support in the mnda grant.

    I've encouraged fund raising and friends and my local pub have raised funds but I can't help feeling that money raised would be best going to local mnd patients and not sucked up by charities that have obvious rules etc .

    I know this post won't sit well with some. But seriously my first big ask and totally let down.


    A year ago I believed having such an awful disease that I would receive good support.

    For those getting that great support and am so pleased for you. X
    Diagnosed May 2021 bulbar onset als.

    #2
    shelly21 am so sorry Shelly. That is really crap. bit unsure if I am allowed to say that. Is there an "appeal" process for mnda grants? Can you ask for the decision to be detailed as to why you weren't offered the full amount?
    personally I am terrified about progressing especially given the lack of care in so many areas and for so many patients. Worries me sick.
    I just wanted to respond and to say I am thinking of you. Its upsetting reading about incidents like this and how this wouldn't happen with other illnesses I feel. Xx

    Comment


      #3
      shelly21 so sorry to hear this, you must be really frustrated. It sounds like you were not asking for much. I hope at least the adaptations make life a bit easier for you. It seems a bit unfair though

      Comment


        #4
        shelly21 It’s hard enough that you’re trying to manage with this brutal disease and then you are left out in the lurch! It must feel like a slap in the face. I know that asking friends and family to fundraise is not easy either. I haven’t even been able to talk about my diagnosis with most people, never mind ask them to fundraise.
        I almost feel like we need to ask contractors and builders to donate time and experience for helping with home renovations, kind of like how they do so with Habitat for Humanity.
        I hope you can appeal the amount they’ve offered.

        Comment


          #5
          shelly21 how frustrating. It’s hard enough to deal with everything this disease throws at us. We shouldn’t have to be dealing with the lack of support. My OT completed an application for funding for a ramp last year. I was denied as I didn’t meet their risk assessment. I was two weeks away from not being able to leave the house because of stairs.

          I hope things get better for you trying to get support.
          Diagnosed December 2020 with lower limb onset ALS, now involving hands and arms.

          Comment


            #6
            Oh Shelly, this is so upsetting to read - why, oh why, oh why can you not get a grant from monies raised for exactly the reasons you require one.

            Notwithstanding the fact the OT lowered the original grant amount:
            Originally posted by shelly21 View Post
            ... she only applied the £1090 for the door. Then the mnda offered £570
            On the phone call today, did the person from the MNDA give the reason why you were only getting ~50% of the requested amount? Perhaps there wasn't enough supporting paperwork submitted by the OT, or something. And can you appeal?

            I don't blame you for feeling very let down. xx
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

            Comment


              #7
              Thank you. I am grateful for the help but to be fair the mnda were not told the full amount of the work needed. My useless OT that I haven't seen since last year!

              Its been one department after another that make errors. I am so so glad for this forum and family and friends for support.

              I was such a positive person. I've got let down, upset but always got up the next day with the mind set of it will get better. I was a huge huge advocate of our nhs.
              I'm sorry folks for being so negative and perhaps this isn't the place to air my emotions x
              Diagnosed May 2021 bulbar onset als.

              Comment


                #8
                Don't ever apologise for venting how u feel in such a tough environment and situation. No sorrys needed at all xx

                Comment


                  #9
                  Originally posted by shelly21 View Post
                  I'm sorry folks for being so negative and perhaps this isn't the place to air my emotions x
                  It absolutely IS the place to air your emotions Shelly - through thick and thin, that's what we're here for 💪🤗😘
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  Comment


                    #10
                    Thank you ladies. I'm sick of crying so I'm going to be angry for a while x
                    Diagnosed May 2021 bulbar onset als.

                    Comment


                      #11
                      shelly21

                      That is truly crap and no wonder you feel let down and angry. In the face of this awful disease it seems like we have to fight for everything and then pay for it ourselves. This is the place to vent your emotions and rightly so. I feel your frustration with your useless OT and hope someone can appeal on your behalf xx
                      Diagnosed 3rd November 2021 Bulbar Onset

                      Comment


                        #12
                        GillB thank you. I'm sick of fighting. I won't appeal. I did email mnda connect and they responded but no change to the outcome.

                        Its a lesson learnt x
                        Diagnosed May 2021 bulbar onset als.

                        Comment


                          #13
                          I'm so sorry Shelly. Could you phone MNDA yourself? I know we got £500 to pay for a short break so surely you should get the full amount for something useful.
                          TBH I know exactly how you feel, all the money raised should really make the life of the sufferers substantially easier. Sending a hug xxxx

                          Comment


                            #14
                            Music man's wife they telephoned today and my partner explained the disappointment. Then they also emailed me explaining its down to grant protocol. I did respond but they didn't change the grant figure.

                            I was shocked to see that half was from the dodie weir foundation and half the mnda. I really thought all the millions raised in funding for the association would have no need for help from another charity.
                            I also thought an important adaption would qualify for the full amount.

                            I feel split in that I love this forum and without the mnda it wouldn't exist.

                            Thank you for the hugs. Much needed x
                            Diagnosed May 2021 bulbar onset als.

                            Comment


                              #15
                              shelly21 you've every right to feel angry. That OT 'stuffed up' he/she needs to make it right and do whatever necessary to get the full amount.

                              So sorry you've been put through this.

                              Of course this is exactly the right place to vent your feelings. We care about you💙💋
                              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.​​​​​​

                              Comment

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