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  • Kayleigh
    replied
    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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  • davidr
    replied
    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.

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  • davidr
    replied
    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.

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  • Kayleigh
    replied
    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.

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  • davidr
    replied
    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.

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  • Kayleigh
    replied
    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.

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  • davidr
    replied
    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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  • MNDConnect
    replied
    Hi Kayleigh,

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

    Best wishes,
    Prachi

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  • Kayleigh
    replied
    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

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  • MNDConnect
    replied
    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

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  • psj
    replied
    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?

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  • Kayleigh
    replied
    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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  • davidr
    replied
    Hi pjs, my wife is in pretty much the same state as your husband, all this within 6 months of diagnosis, I feel for you.
    dave.

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  • davidr
    replied
    Hi kayliegh, marie curie are coming Tuesday night to sit, got told they would ring prior to coming, to night the phone rang, it was marie curie office, said do we want a marie curie nurse for tonight as well as tomorrow, as my wife had a bad turn earlier, and had to call the doctor out, its left her very shaken, so we declined the offer for tonight, besides the room was not set up for the nurse (arm chair) in there for her, was going to sort that tomorrow, the doctor did say he is going to ring social services tomorrow and play hell with them for not setting carers up yet, he was morified when I told him it was 5 months before we got allocated a social worker, somebody's ears are going to be burning tomorrow.
    What I am annoyed with, if you qualify for having sitters in over night, the nhs only fund for 3 nights, so your not ill for the other four night!!!


    dave.

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  • Kayleigh
    replied
    Hello psj,

    Welcome to the forum. I am sorry about your husband's diagnosis.

    Thank you for sharing your experience of CHC provision for your husband. It sounds like although we may have a genuine medical need for CHC, it is something that is 'held back' from us and we really have to fight to get it. You must have had enough to deal with without having to 'jump through hoops' to get the funded care that your husband is entitled to. Thank you for letting us know about the existence of a higher band, which we may not have previously been made aware of.

    The prospect of applying for CHC fills me with dread - it is enough for me to cope with the day-to-day challenges of having MND, and I really don't think I am going to be well enough to cope with the complex assessments/bureaucracy of applying for CHC. I will probably have to manage the best that I can, with whatever help I can get from my husband who works full-time.

    Hopefully, things will go smoothly for David (on this forum) and his wife, when she has her initial assessment for CHC.

    It is heartwarming to hear how the wonderful Marie Curie nurses have been so caring, helpful and supportive.

    Thank you for making your first post on this forum. It is lovely to hear from you and very kind of you to share your knowledge with us. Please feel welcome to post again, whenever you would like to.

    Love and best wishes to you and your husband,

    Kayleigh x
    Last edited by Kayleigh; 7 January 2019, 22:53.

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