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    #16
    MartinB sorry you had that horrible experience from a professional who should know better!!!
    I had to find out about the DS1500 for myself and info from others on here that was helpful.

    It's hard not to become overly medicalised post diagnosis I've found....but I kick against it from time to time. Like the consultant who asked me if I was overly emotional (labile) & I said well we're living through a pandemic with hundreds of thousands of deaths and I've just been told I have a terminal disease I think it's perfectly normal to cry now & then don't you🙄😜

    Good luck😎👍
    ​​​
    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.​​​​​​

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      #17
      Originally posted by LindaB View Post
      MartinB sorry you had that horrible experience from a professional who should know better!!!
      I had to find out about the DS1500 for myself and info from others on here that was helpful.

      It's hard not to become overly medicalised post diagnosis I've found....but I kick against it from time to time. Like the consultant who asked me if I was overly emotional (labile) & I said well we're living through a pandemic with hundreds of thousands of deaths and I've just been told I have a terminal disease I think it's perfectly normal to cry now & then don't you🙄😜

      Good luck😎👍
      ​​​
      Indeed Linda, the irony is Caroline has been a professional carer for the last 20 years showing empathy to those in here care even in the worst moments. Sometimes we feel like the neuro staff we deal with are simply going through a ‘tick box’ exercise and acting like funeral directors rather that clinical staff. I realise that sounds harsh but thats our experience. And yes, its perfectly normal to cry now and then as we do often. Take care x
      Husband and carer to my wonderful wife diagnosed with ALS Oct 20.

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        #18
        Think everyone should have a good cry. I really think it helps. Might not solve problems but clears out a lot of the grief.

        I have a problem with answering some questions seriously. I think it's my way of dealing with things I don't want to face. I've had to put off sharing/asking Stephen a lot of things and then find the right moment to discuss a situation. Then he forgets what was decided. I have to make decisions on my own. It can be very stressful but at least he's been spared the worst of it.

        😞
        when i can think of something profound i will update this.

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          #19
          Totally agree with the rebalancing effects of having a good cry, Denise.

          I can't imagine how hard it must be for you, and for every other form-filler, to see things written down in black & white, a confirmation of facts often left unacknowledged...

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

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            #20
            Originally posted by denise View Post
            Think everyone should have a good cry. I really think it helps. Might not solve problems but clears out a lot of the grief.

            I have a problem with answering some questions seriously. I think it's my way of dealing with things I don't want to face. I've had to put off sharing/asking Stephen a lot of things and then find the right moment to discuss a situation. Then he forgets what was decided. I have to make decisions on my own. It can be very stressful but at least he's been spared the worst of it.

            😞
            This is very similar to Caroline and I, neither of us are in denial but being confronted with so much at once is often overwhelming. Marie Curie have been very helpful with their advice and approach to this. I wouldn’t say I hide things from her but like to think I shield her from the worst of it. Stressful, absolutely…..😢
            Husband and carer to my wonderful wife diagnosed with ALS Oct 20.

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              #21
              I think my worry is that my treatment so far hasn’t been very patient centred. For example, I was rushed into having my RIG in case my condition should ‘suddenly’ deteriorate, as Mary very clearly explains, but it was two weeks before a long awaited holiday, during which the stoma site became infected. The pain took the shine off the holiday and nine weeks after the procedure and three courses of antibiotics later, it’s still infected. I had requested the procedure in July or August when I would be at home and had nothing else going on, but I was talked out of waiting by the MND nurse and the dietitian whose professional viewpoint I naturally respected. But in hindsight, I wish I had gone with my instinct that I would be perfectly able to have the procedure later and I think they should have respected my wishes, having duly warned me of the dangers of delay. That’s why I wanted to see my test results before agreeing to ventilation. How little the hospital based care team listens to me is evidenced by the fact that every copy letter to my GP that I see is full of errors of fact, for example that I have already commenced tube feeding (I haven’t); that my husband accompanied me to the meeting with the respiratory nurse (he didn’t) and that I recently reported increased hand weakness (I didn’t). And while the medical staff are busy initiating DS1500s and End of Life consultations, I don’t think they give much thought to the impact these actions have on their patients.

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                #22
                Mary C Thank you for your very kind reply, Mary. I think our experiences vary depending on where in the country we live. And perhaps some hospital staff are under greater pressure than others and so have less time to be empathetic.

                Comment


                  #23
                  Hi SallyAnneB,
                  I too didn’t feel well after the Rig Procedure and developed an infection.It took a couple of weeks to improve but all ok now.

                  On one occasion my neurologist wrote in the report that I had memory impairment.( I checked with my adult offspring and they assured me I do not show any cognitive impairment ).
                  At the next appointment accompanied by my daughter as usual I asked the neurologist to evidence that I have a memory impairment and what he based this conclusion on.I also reminded him that I have mental capacity unless proven otherwise.

                  So after a conversation and a mini mental health assessment he concluded I didn’t have any such problem.
                  He agreed to write to my GP correcting this error after I pointed out I have lasting power of attorney in place and did not want any health professional by passing me and liaising with my son and daughter on the assumptionI can’t make my own decisions.

                  I would say I have been well supported by him and the palliative care team but I ensure after each consultation there are no further errors in his reports.

                  I do hope you get a full explanation about why now is the time to consider a non invasive ventilator and results of tests are explained.Also the consequences likely to occur if for any reason you wish to delay using the NIV.

                  I felt first the NIV and then the RIG was a lot to get used to in a short period of time.

                  Best wishes
                  Mary ever

                  Comment


                    #24
                    It seems there is - as you say SallyAnnB - a difference in how we are treated dependent on area...hospital etc. Which is a shame.
                    I always try to give feedback....good or not so good because ultimately it's only by hearing our voices that improvements can be made.
                    Sounds like you've been at the receiving end of poor practice by those clinicians....does seem they're so focused on the end of life care they've forgotten the quality of the here and now. Sorry for your ordeal🙏
                    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


                      #25
                      I'm not making excuses for anyone but perhaps they want to get the awkward stuff out of the way so we can all get on with the rest of it. When you think about it there's never a good time but if it's visited early on it might be easier to deal with?!! Might help if someone warned us beforehand what kind of discussion/decision making was due.

                      I think I was being shielded from knowing what ds1500 was all about - the part relevant to Stephen. I brought the subject up. There wasn't much point in tip toeing around. We have a visit arranged for Thursday so I'm preparing for anything that might hit me. I'm compiling a list. Checking it twice.....
                      when i can think of something profound i will update this.

                      Comment


                        #26
                        "Awkward stuff" is even more worthy of being delivered with a full explanation with empathy and compassion when the subject is broached though, which didn't happen in Caroline's case - nothing short of shameful...
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                        Comment


                          #27
                          Mary C Mary, your posts certainly don’t show any cognitive impairment! I asked for the letter that said I was tube feeding to be corrected and another letter was sent, but the original still shows on my medical record and the correction doesn’t, so not a lot of progress there.

                          Comment


                            #28
                            Don't talk to me about DS1500!!!!

                            We've had a right old rigmarole the last 5 weeks over this. Hubby was sent a 'Capability for Work' assessment form and I was straight on the phone (50 min wait) to the DWP and spoke to a young girl who told me it was a mistake and to throw it in the bin. Ok I thought. Hmm? Then as the deadline was looming for the threat of his benefits stopping because I'd not filled it in, I thought I'd better ring back. Took over an hour to get through only to be told I should have filled it in and most certainly should not have thrown in bin (which I didn't btw) so I asked why, when you already know he's had MND for 13 years, have a DS1500 on file and he's not miraculously going to wake up one morning and be fit and healthy? (I was on one that day because I'm worn out).
                            Anyway, the woman told me to please get a DS1500 and send in and no need to fill out form etc etc. So I rang GP....he wouldn't do it. Emailed neurologist's secretary to get one, and did get one sorted so I drove to hospital to collect it and then drove straight to DWP Assessment Centre to hand in. Had to leave it with a security guard as couldn't go in building. Guess what? It's nowhere to be found. Had another form in post this week threatening cut off of benefits, despite the hospital forwarding by email the DS1500 direct to DWP. Going round in circles AND TOTALLY P... OFF.....! I've sent in a letter of complaint because Data Protection has been breached - I mean, where's the DS1500 I dropped off and personally handed in? No one at DWP ever takes ownership of things like this and I am fuming. So they've had it twice, once from me and once direct from hospital. It just beggars belief.
                            Anyway, rant over..

                            Boiler x

                            Comment


                              #29
                              Originally posted by Boiler68 View Post
                              Don't talk to me about DS1500!!!!

                              We've had a right old rigmarole the last 5 weeks over this. Hubby was sent a 'Capability for Work' assessment form and I was straight on the phone (50 min wait) to the DWP and spoke to a young girl who told me it was a mistake and to throw it in the bin. Ok I thought. Hmm? Then as the deadline was looming for the threat of his benefits stopping because I'd not filled it in, I thought I'd better ring back. Took over an hour to get through only to be told I should have filled it in and most certainly should not have thrown in bin (which I didn't btw) so I asked why, when you already know he's had MND for 13 years, have a DS1500 on file and he's not miraculously going to wake up one morning and be fit and healthy? (I was on one that day because I'm worn out).
                              Anyway, the woman told me to please get a DS1500 and send in and no need to fill out form etc etc. So I rang GP....he wouldn't do it. Emailed neurologist's secretary to get one, and did get one sorted so I drove to hospital to collect it and then drove straight to DWP Assessment Centre to hand in. Had to leave it with a security guard as couldn't go in building. Guess what? It's nowhere to be found. Had another form in post this week threatening cut off of benefits, despite the hospital forwarding by email the DS1500 direct to DWP. Going round in circles AND TOTALLY P... OFF.....! I've sent in a letter of complaint because Data Protection has been breached - I mean, where's the DS1500 I dropped off and personally handed in? No one at DWP ever takes ownership of things like this and I am fuming. So they've had it twice, once from me and once direct from hospital. It just beggars belief.
                              Anyway, rant over..

                              Boiler x
                              What an absolute nightmare, your rant is totally justified.
                              Husband and carer to my wonderful wife diagnosed with ALS Oct 20.

                              Comment


                                #30
                                I'm hoping to get some forms sorted today. Reading all this puts me right off. Makes me think there are benefits that no one claims because people just give up trying. Don't see why this can't be done online but it seems to be paper and post. I thought everyone was going paper free. I shall be glad when today is over.
                                when i can think of something profound i will update this.

                                Comment

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