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    #16
    Hi Dave,

    Sorry to hear that your wife had a bad turn today. I hope she is feeling a bit better and more settled now.

    It sounds like you have got a good and kind doctor there, who will hopefully get things moving quickly re: carers.

    It is shocking that you are only entitled to night cover for 3 nights a week - I would like to see whichever bureaucrat(s) it was who made that rule have to survive on just 3 nights sleep a week, like you are expected to.

    Thank goodness for the wonderful Marie Curie nurses. I hope that all goes well with the night cover on Tuesday and that you manage to get a good night's sleep.

    Very best wishes to you and your wife,
    Kayleigh
    Last edited by Kayleigh; 7 January 2019, 23:29.

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      #17
      Hi again.

      You have to tick a lot of different boxes for CHC. When husband was initially fast-tracked, he was still -just-mobile. Also, still eating and drinking with supplementary calories through RIG. However, despite limb onset MND, his voice was the first to go and it went quickly and entirely - I blame this on his teaching career.... Also, on a ventilator. He also scored highly on psychological issues and other things.
      But the main ticks were: no speech, RIG, ventilator. That got him CHC.
      We really didn't have to fight for CHC. We had an unusual background to diagnosis which threw up lots of external stress on top of MND and I have always felt that district nurses took that into account. They also took into account that we have zero familial support and that I was not that old (early 40s).

      Davidr -why social services and not district nurses to do CHC? The only involvement of social services we had was someone turned up to be part of a panel of CHC. It should be done by district nurses! Where in the country are you? What's your support from the MND Care Centre?

      Comment


        #18
        Hi Kayleigh,

        It is understandable that given the unpredictable nature of the condition, you are trying to plan for your care provision and that this is worrying.

        Unfortunately, CHC can be difficult to obtain as it is not disease led and as such a diagnosis of MND would not automatically qualify an individual for this level of care. Eligibility is based upon the individual’s symptoms and the type of care and intervention they need but if someone has complex medical needs and their condition continues to deteriorate, then at some point they will be assessed for CHC. If unfortunately, when the time comes, you aren’t eligible for CHC, then your care needs will still be assessed by your local adult social services and this assessment will allow you to explore aspects of personal care or emergency support and a variety of other needs.

        Kind regards,
        Prachi
        MND Connect
        Contact us on 0808 802 6262 or at [email protected]

        Comment


          #19
          Hi Prachi,
          Many thanks for kindly replying to my post.

          Although CHC is not easy to get, it is good that I now have some idea of what would be involved if I do want to apply for it in future.

          Many thanks for your advice and information.

          Kind regards,
          Kayleigh

          Comment


            #20
            Hi Kayleigh,

            You're very welcome. If you have any further queries, then please do not hesitate to contact us again.

            Best wishes,
            Prachi
            MND Connect
            Contact us on 0808 802 6262 or at [email protected]

            Comment


              #21
              Hi, I thought the minimum was £40,000 now, could be wrong.
              dave.
              Last edited by davidr; 8 January 2019, 20:05. Reason: wrong word.

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                #22
                Hi Dave,

                If you wife is provided with CHC then it is not means tested because it is fully funded by the NHS - this is what you said the Marie Curie Nurse is going to do the 'initial assessment' for.

                If your wife does not qualify for CHC, there may be the option of her care to be provided at home via Social Services - however, payment for this care is means tested and costs won't by fully funded by your council if you have savings over £23,250. If you go to page 1 of this thread and see the MNDA post (by Prachi) at the end of the page you will see more detail about this.

                I recall from one of your posts that you are having a bedroom and wet room built and this work is being organised by you local council. Perhaps the £40,000 you are referring to relates to means testing by the council for the costs of that work? - I am not familiar with what the thresholds are for payment towards house adaptations, but hopefully someone else will here will be able to advise you.

                Best wishes
                Kayleigh
                Last edited by Kayleigh; 8 January 2019, 21:12.

                Comment


                  #23
                  Hello, today the district nurse did the assessment for sue, sue scored on every question, so I take it has to go to a board? the nurse said she not seen anyone go down so quick over such a short period and will on get worse, that's ok qualifying, but i'd rather not be asking for it, last night was the first night in 5/6 months for me to have a nights un broken sleep, all down to marie curie nurse, she really put sue at ease.
                  dave.

                  Comment


                    #24
                    Hi Dave,

                    Very glad to hear that you were able to have a good night's sleep last night. Also, wonderful to hear how helpful and re-assuring the Marie Curie Nurse was.

                    Looking at the NHS guidelines about applying for CHC, it looks like the next stage is the 'full-assessment'. I have posted a link to the guidelines, below:-

                    http://https://www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/nhs-continuing-healthcare/

                    The guidelines include the free helpline telephone number for the 'Beacon' advisers who can give you up to 90 minutes of free advice about CHC. It looks like they are experts in how the CHC process works. It is probably worth phoning them if you would like more detailed information or advice.

                    Best wishes to you and Sue,
                    Kayleigh
                    Last edited by Kayleigh; 9 January 2019, 19:37.

                    Comment


                      #25
                      Chc

                      Originally posted by Kayleigh View Post
                      Hi Dave,

                      Very glad to hear that you were able to have a good night's sleep last night. Also, wonderful to hear how helpful and re-assuring the Marie Curie Nurse was.

                      Looking at the NHS guidelines about applying for CHC, it looks like the next stage is the 'full-assessment'. I have posted a link to the guidelines, below:-

                      http://https://www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/nhs-continuing-healthcare/

                      The guidelines include the free helpline telephone number for the 'Beacon' advisers who can give you up to 90 minutes of free advice about CHC. It looks like they are experts in how the CHC process works. It is probably worth phoning them if you would like more detailed information or advice.

                      Best wishes to you and Sue,
                      Kayleigh
                      Hi kayliegh, thank you for the info, this forum is a god send to me, people out there willing to help others with info and support.
                      dave.

                      Comment


                        #26
                        hi kayliegh, I got things mixed up, the £40,000 was about the finance's of the mother in law and care home fee's, not sure if its the same for getting the extension, something kicked in with our finance's for us having to pay £15'000 towards it, to be honest, the extension will get built but I don't know if my wife will benefit from it, her health has really gone down over the last few days, my head has been all over the place, sick with worry for her, I slipped up when the district nurse assessed her yesterday, should have shown her the ds 1500 form given to me by our doctor, would of fast track the claim for CHC.
                        dave.

                        Comment


                          #27
                          Hi Dave,

                          I am sorry to hear that you wife's health has declined a lot in the past few days.

                          It is totally understandable that you forgot to show the nurse the form - you have got so much on your mind and you must be exhausted having to care for you wife by yourself and with such little sleep.

                          It sounds like fast tracking the CHC would be extremely helpful, especially as your wife's health has declined so much this week. Would you be able to phone the nurse to let her know that you have the form? (or if you don't have her contact details, perhaps the hospice would be able to get a message to her?). Also, it sounds like you have got a very caring doctor - perhaps he is able put in a recommendation for the CHC to be fast-tracked?

                          You have probably got enough to deal with without having to make phone calls, and I am sorry that I cannot be of more help. If I could, I would offer to make phone calls for you, but due to this blasted MND my voice is not so good anymore. (I am fortunate that I can still speak and am ok speaking to people face-to-face, but not so good communicating on the phone).

                          Thinking of you and Sue.
                          Kayleigh x
                          Last edited by Kayleigh; 10 January 2019, 13:38.

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