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    Zoomy with local MP

    Saturday 12th I've been asked to join a zoomy meeting with local MP Luke Pollard and local councillors. I think he wants to meet the woman who keeps sending him emails full of complaints about local services, dreadful gaps between appointments and lack of communication between everyone involved with treatment. Theres more but hey I don't want to be known as a nag so if anyone has anything I can bring up. I'm in the Devon area but if they look at things local then it could go national.
    πŸ™‚
    when i can think of something profound i will update this.

    #2
    I have never wanted to be a fly on the so much. πŸ˜‚πŸ˜πŸ˜˜πŸ˜xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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      #3
      Yes let's hope I'm in fighting mood and Stephen doesn't want to join in. Xxxx
      when i can think of something profound i will update this.

      Comment


        #4
        denise

        I could write a novel.

        No fast track for anything, this is stupid. We had to move twice and 150 miles to a different region to get a "wheelchair accessible flat".
        Still waiting for door adaptions (5 months) and closimat (2 months, they forgot to send me the forms which ask for the same information we gave in Sept for the door adaptations. (In Cumbria)

        So still housebound for 2 years now in 3 different addresses. No help to access disablity housing, discrimination if you are on benfits from private rentals.

        We were prepared to move anywhere (in UK) for assessibility but no help to do this.

        You don't get a housing officer until you are in social housing/ housing assocciation. (which we now are)

        People don't update you or phone you back.

        For something which can kill you quickly, people don't have time to wait on this. There seem to be no urgency from the professionals.

        No carers to help apparently but still waiting to be allocated a social worker.

        Even spotty with the Hospice at Home (which we are lucky to have).

        What soapbox and drum are you beating. I may be able to expand with lived experience.

        I am thinking of contacing my MP too.

        I can literally only go to the corner shop, as can't leave Thomas for any length of time.
        Not everyone has family support. Thank goodness for deliveries.

        I am also caring remotely for both parents with dementia so need to get to see them in person soon. When I asked if I could pay someone privately to sit with Thomas for a day, they didn't exactly laugh out loud. Social care was on it's knees before COVID.



        Donna
        Wife/carer for Thomas diagnosed July 2020 MND of Fail Arm Type.








        Donna

        Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.

        Comment


          #5
          Donna do what I have done and keep complaining. It makes me feel better, its like therapy. I will certainly bring this up. I was on my last legs, thought I was going to collapse. 2 safeguarding measures and then I get help which seems a*** about t**. But yeah they came round and i was told how wonderful i am and we should move but i think they got used to NO I AM STAYING PUT. My sons flat. You get to work with us. We suggested alterations way back. No they said cant knock down walls - why they weren't even real walls. No cant widen doors. I paid for new loo. Biobidet turned up. I paid for stair lift. On it went and no I'm not moving. My son is happy with alterations. Finally housing guy turns up and agrees to everything I suggested. Putting in wet room, cosomatic or whatever it's called, water pump the works. Though the catch might be when and how do I live in a flat with all this going on and will it happen in my life time. Will my cats leave home? Sometimes I think if you are too helpful they just let you get on with it. If you are a pain in the a***. They get to do something. Complain girl give it your best.
          then I'm told denise you need help get carers in even useless ones. Why im perfectly useless on my own don't need help. So I try and give up. Send off financial stuff with help from my son because I didn't know how to do this c***. Then month later I'm told I haven't sent it. Oh yes I have and they apologise. Meanwhile I get a card with payment on it to pay for help. Careworker figures out I can put husband in age UK dementia centre twice a week. Give him something to do and gives me a break. Then financial people comeback saying we can afford to pay towards help for domicillary care. We have no domicillary care and they took my pension into account. I'm thinking there is a mistake somewhere. I hope so because they insist I need help from a mental health point of view but I get to pay for it? It's all this mess that's given me health problems and caring for my husband is a walk in the park. No wonder dementia care is overloaded because at this rate my name will be on the list.
          sorry for this rant but a week away because it's all been doing my head and health in. I brought us back to UK for help. Honestly what an absolute mess. πŸ™

          Annoyed from Plymouth
          when i can think of something profound i will update this.

          Comment


            #6
            denise

            Bloody hell

            Get a benefits review, I discussed it with folk at MND, just to check. But there is a weird thing about money were there is an area were you have too much to get help but not enough to pay bills. My dad's tiny private pension nearly pushes him off benefits he only get's 10 pound pension credit.

            Also couples are classed as one person for purposes of financial help.

            Yes the admin around this would break anyones mental health. I need a day off to see my parents. ( Which isn't respite actually)
            I can get my husband to bed fine and they have given us a stand aid if required.
            I prefer the flexiblity of dealing with this myself. When we get up and go to bed is about the only thing we have control over.
            Plus this place is so tiny, having people in make it feel crowded.

            But we still need social work of some kind.

            I was a nurse so the toileting etc is okay but we really need this closomat. We got a Biobidet from the MND Association (which is still in the box)
            because we didn't think we would get a housing association place. And private rental was "fun" but they wouldn't future proof.

            Can you try Hospice support, they are supplying me with a weekly hour family support call. It is just a listening ear but it does help to rant to another person.

            It is a bit like The Samartians ( which I did phone a few times a few years ago) when I was on my knees with my parents and Thomas was my Rock.

            Social work patted me on the head for years even though I had given up my job to care,
            then and only reluctantly gave help when I ended up in hospital for a month.

            I started this MND journey already burnt out and cynical about social care.

            We lived in Bulgaria for a time but had to come back for my parents, diagnosed way back in 2006. I so miss the sunshine.

            Get a second opinion on the money side.
            Regarding mental health I would try as I said,
            Hospice and Carer support charities.

            There is a Facebook carer group called Mobilise (I think that offer half hour support calls)

            Like you the caring aspect is a doddle in comparision to everything else.

            Pissed off from Cumbria





            Donna

            Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.

            Comment


              #7
              Hi Donna
              final straw bio bidet has packed in. No warm water. I tried putting finger on sensor, pressing buttons to get a flow of water. Fine lots of cold water and I'm soaked. Suppose I needed cooling off.

              Tried hospice but apparently my husband isnt dead enough to qualify. I'm sorry if this offends anyone but that's what i was told in a more polite way. During the multidisciplinary I was laughed at for suggesting it.

              As for financial stuff if this is the way its going to go they can shove the whole thing. I hate all the whole banking thing and if they are getting me involved with things I cant keep track of then it's not going to happen. Lpa was a right mess. First direct took the online route and happily did what I requested but Luke Pollard got involved as I was practically locked out of our joint account for 6 months as I dared to move house and change telephone number. Local government financial services happy to take scanned copy. Scottish widows wanted the real deal posted to them I wasn't keen this thing cost Β£80 or there about. So they said take it, passports and husband to a local bank to get the whole thing signed off. I said I don't have wheelchair I don't have a car and I'm not taking someone at risk of falling anywhere, and hey local bank do they even exist? and for that matter same with regard to going to post office. So they said they do not regard using the office of the public guardian as a suitable option because a third party is involved. No idea what this means. So we are at standoff. We could have done with the money but then again having money works against us it would seem. Just completed medical lpa no doubt this will drag up some s***e too.

              Someone beam me up. πŸ€”
              totally peed off from Plymouth
              when i can think of something profound i will update this.

              Comment


                #8
                denise Pity you can't invite us to your Zoom meeting, on second thoughts, maybe not...

                Hope it goes well and any help promised actually materialises, unlike every other time... πŸ€žπŸ€žπŸ€—πŸ˜˜
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                ​

                Comment


                  #9
                  Thanks ellie. If we don't try we don't get.
                  Wish you could all come along.
                  xxx
                  when i can think of something profound i will update this.

                  Comment


                    #10
                    The time element was a crucial thing for us - getting fast tracked for equipment/adaptations in the house. Too many people end up in crisis because councils don't work fast enough and frankly don't care enough. Our nurse put the referral in in October, it was May when the adaptions were done after lots of chasing. My husband was walking on crutches in October, by May he was just about managing chair-to-chair transfers. We were told in February by our council OT that she couldn't "evidence the need" for the ceiling track hoist. A whole other story to that but the bottom line is that people don't get how fast MND can develop and how devastating it is on so many levels and that council officials really don't care about the person, only about box-ticking, unless they are shamed/pushed into behaving in a more humane way.

                    We were very lucky, having an MND nurse to champion our cause and co-ordinate our care. Maybe push for dedicated nurses? Gordon Aikman campaigned for them in Scotland as before there was only patchy support from MND Scotland (who are fantastic) but now they are employed by NHS.

                    Reading through what you are going through makes me ashamed to have been so stressed and distressed. To deal with all of these things on top of caring for a husband with MND is cruel.

                    Good luck on Saturday Denise - and you're absolutely right about keeping on complaining, the more of a pain in the backside you are, the more likely they will listen.

                    Can't believe the response to you re. hospice care!
                    Husband died 14 months after MND diagnosis.

                    Comment


                      #11
                      Thanks Betty may

                      We really need to shout and loud. The housing officer was mnd aware which impressed me. Looks like Plymouth have signed up to Act to Adapt campaign. Which I intend looking up.

                      Had quite a good carers meeting this afternoon.
                      when i can think of something profound i will update this.

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                        #12
                        I would involve Stephen to let them know what you are up against. Hopefully he will be on form...

                        Lots of love xxxx
                        Copyright Graham

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                          #13
                          Oh Graham I know what you mean that would certainly liven it up. He thinks nothing of walking round with his pants around his ankles and one day I was doing a zoomy carers meeting and he announced he'd pi**ed his pants. I can just see him leaning over and saying hello and who are you lot.

                          But yeah good plan
                          Love and cuddles
                          Xxxx
                          when i can think of something profound i will update this.

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