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Chc meeting tomorrow

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    I had a really bad night last night with leg and knee aching. Tired out, not firing on all cylinders

    Peter the same, he got disturbed four times so he ain't in finest fettle

    This, strangely enough, this is the worst morning I have had for tiredness so perhaps that will tick another box
    None of it intentional. I wanted to wash my hair today!

    We will see

    Much love to all



      Meeting over and done. Six NHS professionals, two trainees and Peter, his son and me -and the dog!

      They were here over two hours, have taken my big report of evidence, will prepare the dossier and present to the big panel, who convene twice weekly. We have managed to get three As and a fair few Bs

      So we wait and see

      Hope we don't have to keep self funding - we need the money to enrol on some ballroom dancing classes!

      Oh yes, and we are on electric feed today! So much going on!

      Much love



        Fingers crossed Joycie. System is wrong if you don't qualify.

        Are you starting pump feed at a slow rate and low dose so your tummy gets used to it?

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


          100 an hour but we are going slowly today. Have hardly anything these last six days!

          I said to Peter our food bill will be so low these days
          Much love

          Joycie x


            You're right to go slower, especially as you haven't eaten much lately. Hope it goes well for you x.
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


              Oh Joycie its one thing after the other, but I am learning so much from your e/periences! so far the OT came to visit last week and trying to demonstrate getting on and off the loo with a broken collarbone was tricky. However she has started the ball rolling for a wheelchair and was supposed to be coming this week with a seat for the bath, however no show yet. As my arm is now firmly encased in an nhs arm support I have not much hope of demonstrating anything haha. As everyone says if you don't get chc then what hope the rest of us. Fingers crossed. Love to you both A&T


                Hello Ann

                You have to live through it to really understand it! We are so fortunate. We had two lovely district nurses who looked after me when I had the peg infection in January, one briliant senior OT from NHS outreach neurological support unit, who has been with us from the start and our super keyworker from adult social care - all completely onside! And two trainees

                The thing that they says sometimes holds it up is the lack of evidence but they had a comprehensive daily blog going back to 23rd October. We don't want it hanging around- we just want to get it sorted out. It is18 more days till we get the ceiling hoist and that is 18 days too long!

                Why don't you and Tim think seriously about a wet room? We simply could not do without ours now. That was one of the best moves we made - and the bio bidet has been worth its weight in gold this last couple of weeks

                The report will be written up by the district nurses this following week and will go to the panel, who meet twice a week, the week commencing 29th November. So, hopefully they will be on it early December.

                Everyone says that we really have been one step ahead of the game but things could have moved faster with this!

                Have spent the afternoon on the feeding tube, the new electric one, but we have abandoned that for the day because I have had so little to eat this week. Just going steady! I can get trifle down so I will have one of those later

                We have peters son here tonight overnight. He came up from kent for the meeting and it is so good to see him.

                So we are very content this evening. Takes the edge of Peter a bit and that is all to the good!

                Much love

                Last edited by ; 20 November 2015, 18:16.


                  Have you got your CHC funding Joycie? We also had a two hour meeting which was quite stressful, and had to wait a couple of days for the results but we have got the CHC funding now, thank goodness. My husband comes home from hospital this afternoon. It will be lovely to have him back home after four weeks in hospital.


                    That's good on two accounts Annie,

                    It should make things easier for both of you once it settles down.

                    Love Terry
                    TB once said that "The forum is still the best source for friendship and information."

                    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.