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So flipping mad, CHC again. For crying out loud!

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    So flipping mad, CHC again. For crying out loud!

    Just to clarify I am a tad annoyed
    I asked the Hospice if Chris could stay in the hospice for an additional week giving me a two week respite so I could go on holiday with our daughter and CHC have refused to fund it.
    They are already getting off very light as the only provide 12 hours care a day and his assessed care needs are 36 hours of care per day.
    Miserable ( insert your own expletive)

    #2
    Honestly, I'm lost for words, rare thing 😏

    Does the hospice do respite for non-CHC patients?

    πŸ€” I wonder... Could you talk directly to the hospice and see if they'd keep Chris for an extra week for 'symptom management' (πŸ˜‰πŸ˜‰) or for respite - hospices don't levy a charge on ordinary admissions.
    ​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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      #3
      I'm so sorry you can't get the respite you both need. We are so often left coping x
      Diagnosed May 2021 bulbar onset als.

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        #4
        The MND nurse is struggling to find respite for a few people, when I asked about it.

        When I asked about the Hospice, she just said nothing.

        I have filled out a financial assessment for Direct Payments. To possibley get a PA.

        I have been asking about respite for a year. Only got a social worker 2 weeks ago. They kept "offering" or implying morning and evening care but our morning and bedtime is very variable. I am managing the physical care but due to not being able to leave the house, respite is needed.

        Only asking for some control and day release for me.

        If I had known about direct payments, I would have done that. As soon as possible.

        I am now beyond pissed.

        The door is still AWOL, so still trapped in.

        Getting the new chair, next week only 7 months waiting.

        Thomas has been losing weight. His tiredness and ability to swallow getting poorer (Refused PEG and intervention)

        Sorry for the rant.
        Donna

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

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          #5
          Hello Dee, so sorry to hear about your situation, Chris has three weeks at home then one in the hospice, so we are both very pleased to get that, I shouldn't be greedy and want more.
          I had a total meltdown when both his carers went sick and that's when Chris was admitted to the hospice. We too had asked for respite for 2 years, nothing available.
          Hope all goes well for you going forward xxx

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            #6
            Music man's wife my view for what it's worth....

            A carers assessment should identify your needs...complete with a carers care plan. This to include the need for a holiday with your daughter.

            As said by Ellie hospice care is not financially assessed...it's a health need.

            If the CCG say they won't fund say an additional week of respite in a nursing home....Chris doesn't require domicilliary care while he is there so that amount ££ needs to be offset against the cost of a week anyway.

            Hope you have a social worker to fight this for you.

            β€‹β€‹β€‹β€‹β€‹β€‹β€‹πŸ™πŸ˜˜
            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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              #7
              Music man's wife

              I hope you get it. The extra week.

              My post was to show solidarity and add to the general information. Feeling a wee bit stressed. I haven't seen my parents who I used to see very regularly and they had COVID.

              After 2 years of MND and lockdown being 150 miles away from anyone, so I would need to take a day for a trip. I have said that I am not looking for over night. i thought that would speed something up.

              Not that I wouldn't like one week of Hospice for Thomas, for professionals to see him for more than for half an hour, when pressurised.

              I also asked about CHC. She skipped over that. I am being left to phone round care providers FIRST before getting a budget.
              Which seems weird to me.

              No carer assessment. My saying, I don't need daily carers but need a block of time regularly and planned in advance. Seems to have gone over everyones head. I thought I was being clear of my needs. Apparently not.

              I am aware that moving regions (consultant and care team too) and then moving house again, complicated things but everything seems to be left to me.

              I know that I am an ex nurse but feeling pretty abandoned. Plus Thomas losing his voice and that is causing a strain as well.

              we have had more tense moments in the last 2 weeks, than in the previous 17 years of our relationship.
              I feel MND standing between us preventing me understanding Thomas' most basic wishes,
              His frustration is mounting and his appiette is going down.

              MND nurse coming tomorrow apparently just for moral support, she says there is nothing she can do. I have used the word emergency a lot.

              But deaf ears are all around.

              Donna

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

              Comment


                #8
                DeeH sounds like you've been given the 'runaround '

                could you ask the MND nurse & social worker to visit together....Thomas is entitled to be considered for a CHC assessment....maybe ask the MND nurse to complete the checklist?

                Tell the social worker you want a carers assessment.

                Good luck πŸ‘xx
                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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                  #9
                  Originally posted by LindaB View Post
                  DeeH sounds like you've been given the 'runaround '

                  could you ask the MND nurse & social worker to visit together....Thomas is entitled to be considered for a CHC assessment....maybe ask the MND nurse to complete the checklist?

                  Tell the social worker you want a carers assessment.

                  Good luck πŸ‘xx

                  LindaB
                  I hope you don't mind. I am going to photo that on my phone. I will tell her tomorrow.

                  Oh and I got an email from the social worker, she is moving and I am getting someone else.

                  The Financial assessmet clerk, only works Mon to Wednesday.

                  They tell you to just ask for help and when you do. Everything is so slow.

                  Have I mentioned that Thomas is still stuck in the flat with a power wheelchair and no access out, since September, so nearly 7 months.

                  The OT is shocked and chasing it up.

                  Thomas seems to have given up his can do spirit. I think the voice loss/mumble, had crushed us.

                  I thought I was going well, dealing with all the admin stuff but we are both fed up now.

                  Thanks for the pep talk.

                  I needed that

                  Donna

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

                  Comment


                    #10
                    DeeH don't give up✊🏼xx
                    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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                      #11
                      I asked CHC for the reason for refusing funding for the extra week in the hospice, also mentioning I am in constant contact with our MP regarding out treatment from them. I got an email back saying they will fund 32 hours care at home per day for the extra time I'm requesting.
                      You couldn't make it up.

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                        #12

                        Good for you.

                        Originally posted by Music man's wife View Post
                        I got an email back saying they will fund 32 hours care at home per day for the extra time I'm requesting.
                        Is 32hrs p/day enough, seems short? xx



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

                        ​

                        Comment


                          #13
                          Music man's wife - I wish I could offer helpful advice. But in truth I am so angry by my own lack of support and care (not dissimilar to your experiences) that it would turn into a massive rant.

                          I have decided to just avoid them all for now and try to muddle through as it is less stressful. I'm not a nurse, so they can't even use that excuse. I don't even have visits from an MND nurse, social services or OT and I'm desperate for carers (awarded 35 hours a week, not had any yet). I must be doing it wrong/ missing something.

                          Anyway.... don't get me started..... sending hugs. Keep fighting your corner and know we all care xx
                          Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                          Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                          Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

                          Comment


                            #14
                            Originally posted by Music man's wife View Post
                            I asked CHC for the reason for refusing funding for the extra week in the hospice, also mentioning I am in constant contact with our MP regarding out treatment from them. I got an email back saying they will fund 32 hours care at home per day for the extra time I'm requesting.
                            You couldn't make it up.
                            They're really contradicting their own assessment...they said (if I remember correctly) hubby requires a permanent nursing home placement with 24/7 care.

                            So when he is home you supplement the care support he requires.(equal to 24/7)

                            Therefore if you're removed from the care support (for an additional week) he requires 24/7 care. They could either provide/fund this at home or in a nursing home.

                            Is the 32 hours on top of what's already agreed for 'at home' care?

                            Regarding social work support my hospice team has a social worker...could this be an option for your support? Sorry you're being given a hard timeπŸ’™xx
                            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


                              #15
                              I don't know what to say in support of everyone. Everything is getting worse rather than better.

                              I'm coping with Stephen's mnd, ftd and his need to give up smoking. What I'm not dealing with is everyone else. Frustrating, stressful, useless, not listening, not sharing, my list is endless. I feel like when I speak no one listens. People come and go but basically things remain the same.

                              I'm sick of complaining because it means repeatedly focusing on the negative stuff. Then when I do complain nothing changes.

                              It all adds to the stress.

                              πŸ™

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

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