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Thread: Care Question- How Much?

  1. #1
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    Care Question- How Much?

    Hi Everyone,

    I seem to be 'queen of asking questions' all the time, so apologies for another one!

    Many of you know it's my Grandma that has ALS. At the moment, she has lost most of the strength in her legs so can only shuffle a few paces with her walker. Her speech is quite slurred and she's gradually getting weaker in the throat so eating is starting to become a problem.

    At present, her care package, under continuing healthcare, consists of 4 carers per day. The morning carer is scheduled in for 45 minutes, with the remaining 3 calls standing at 30 minutes each. This just about covers getting up/dressed/washed, having breakfast, having lunch, having dinner and then getting undressed/put into bed for the night.

    9 times out of 10, the washing up isn't done, there's no time for the carers to wash Gran's hair (plus she generally moans that the carers 'don't do it properly' on the two/three occasions when she let them do it, but that's another story!)- literally nothing else gets done around the house and it also seems to be the case that the gaps between the calls can be so widespread that my Gran often is bursting for the loo for a long time before the carer or myself turn up.

    I work full-time, so I cannot be there throughout the daytime. I was just wondering if anyone agrees with me that the care package should be increased to full-day care at home? I'm new to this continuing healthcare thing, so I don't really know whether it's something that can be changed before the 3 month review period. Any input/experience would be greatly appreciated.

  2. #2
    Forum Member Lynne K's Avatar
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    Hi there Queen of Questions . I think that you'd best ring MNDA helpline for advice. They know the system, how MND effects people and can point you in the right direction. The telephone number ought to be somewhere on this site, or Google it. But I bet somebody will post the number before you have the time to look. Ask however many questions you want. It's no problem at all. That's what we all come to the forum for: to ask questions; offer advice and/ or suggestions, and be a there for giving and receiving emotional support. You are a star, caring for your gran whilst still doing a full time job, Lynne x
    Last edited by Lynne K; 16th May 2019 at 17:05.
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  3. #3
    Forum Member Lynne K's Avatar
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    I just googled MNDA Connect. It's 0808 802 6262 and email is mndconnect@mndsssociation.org
    Lynne x
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  4. #4
    Forum Member Kayleigh's Avatar
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    Hi Chrissie,

    The Beacon organisation has is a free helpline specifically for CHC advice.

    There is a link to the Beacon website in the following NHS guidelines about CHC (under the heading 'information and advice'):-

    https://www.nhs.uk/conditions/social...ng-healthcare/

    Sorry I can't be more helpful, as I don't have any experience of CHC - but hopefully someone on the forum will be able to offer you more advice than I have.

    Love
    Kayleigh x
    Last edited by Kayleigh; 16th May 2019 at 12:58.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  5. #5
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    Thank you both
    Greatly appreciate the help!

  6. #6
    Forum Member Kayleigh's Avatar
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    Just a thought Chrissie - does your Grandma have a district nurse (or Mnd specialist nurse) who you can contact for advice? - I would have thought the nurses would have quite a good insight and knowledge of how the CHC system works and who needs to be contacted to ask for your Grandma's 3 month review to be brought forward, if necessary.

    Love
    Kayleigh x
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  7. #7
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    Hi Kayleigh,

    Unfortunately not! When we had the first multi-disciplinary meeting, I asked the neurologist why we hadn't been assigned one and he said that different areas of the country have different ways of doing it. Some areas have MND nurses and other areas have an Occupational Therapy Team. We've got the latter.
    I am giving this new care company (started yesterday) a week to see how they get on. If I'm seeing the same kinds of patterns/habits as the previous company, I'm going to get in touch with the OT & Team to arrange a one-to-one meeting with them (my Gran tends to downplay things to the professionals and I suspect this is largely down to my daily visits being viewed as a permanent fixture). If the company are not suitable for the needs, I am going to suggest an all-day carer and see where we go from there. So much drama all the time!

  8. #8
    Forum Member Gillette's Avatar
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    Hi Chrissie,

    I'm not surprised that nothing is done around the house by the carers. I have had a similar package, except with an hour in the morning, and all of the time is taken up by personal care.

    Rather than leaving things for a week, it might be worth contacting the OT team sooner than that and asking for your Grandma's care needs to be reassessed. I think you need to explain that you are struggling to do everything that you do for your Grandma. You should also contact social services to ask for a carer's assessment for yourself.
    Dina


    Trying to keep positive, but not always managing.

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