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Thread: Continuing health care

  1. #11
    Forum Member Kayleigh's Avatar
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    Hi Prachi,

    I don't need to apply for CHC for myself yet, but read with interest your reply to David which mentions that CHC is extremely difficult to get.

    I am trying to plan ahead for the provision of my care. I take it that if I don't get awarded CHC, I could be in the position where I am left to 'muddle' along and manage by myself, with whatever help my family can give me when they are not at work etc

    I have not looked into the option of paid carers/nurses yet, but I imagine they are going to a prohibitively expensive alternative to CHC funded by the NHS.

    As funded care via the local authority (social services) is means tested, I might not get that either.

    In theory, I could be in the position where I have an urgent medical need for CHC, but am left to manage without it because it is too difficult to meet the medical and administrative requirements for it to be funded by the NHS.

    It is rather worrying really - but I expect that I am not the only person on the forum who is in this situation!

    Kind regards,
    Kayleigh
    Last edited by Kayleigh; 7th January 2019 at 16:20.
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  2. #12
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    Hi.

    This is my first post although I have been reading posts for the last 2 years plus.

    I am a carer for my husband. He's coming up to 3 years with symptoms.

    He got CHC fast-tracked 6 months ago. He does have, however, what I would term "global " MND i. e. all functions deteriorating pretty much simultaneously, District nurses did it. However, CHC would not pay for the best care agency in the area. After 2 hospItal admissions in short succession which left him immobile and nil by mouth, they relented. However, I was repeatedly told that this was the maximum and, if I couldn't cope, he would have to go into a home which was what the hospital discharge co-ordinator was pushing for. So, he got 4 visits a day by 2 carers, 2 x 4hr respite for me, 2 nights (although I was told this was pretty exceptional -it only came about after I was on my own at night after the discharge with no provision from Hospice at Home or Marie Curie). Then 3 weeks ago at a review, it transpires that this is not the maximum and that there is a higher band that no one told me about! All his visits by 2 carers have been upped in time, he has 1 carer for 10 hours per day and 3 nights. In addition to this, we have Marie Curie-usually for 2 nights a week. They are exceptional. That you have to be at the end of life for their nightsits is nonsense! My husband is NOT end of life.

    I guess we have been lucky to some extent that district nurses did everything at the right time. However, I was told ages ago, that when I started to struggle, it was a sign that CHC should kick in. And this is exactly what happened.

    Hope this can be of some help!

  3. #13
    Forum Member Kayleigh's Avatar
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    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; 7th January 2019 at 23:53.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  4. #14
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    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.

  5. #15
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    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.

  6. #16
    Forum Member Kayleigh's Avatar
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    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; 8th January 2019 at 00:29.
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  7. #17
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    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?

  8. #18
    Forum Member MNDConnect's Avatar
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    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

  9. #19
    Forum Member Kayleigh's Avatar
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    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
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  10. #20
    Forum Member MNDConnect's Avatar
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    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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