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  • Gillette
    replied
    I'm getting so fed up - the more so as it's getting harder each day to type and then my hand touches the screen and it all disappears. Grump. Grump. Moan.

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  • Ellie
    replied
    What mixed messages you're being given Dina

    I take some positives that the CHC Nurse has identified a potential care company and they're coming to see you on Monday, though, at the same time, she's referring your case back for 'independent' scrutiny...

    When talking to the care company, don't be too put off if they're not experienced in dealing with people with MND - the attitude and aptitude of carers tends to be more important than previous experience with someone with MND.

    Hope this whole sorry mess gets sorted very soon.

    Love Ellie.

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  • Terry
    replied
    Sorry Dina, that it's so slow and no information.

    Love Terry

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  • Gillette
    replied
    If you feel like being bored, read on...

    My CHC Funding journey continues apace, albeit slower than a snail's pace.

    The CHC Panel met on Wednesday and discussed my case - but no decision was reached! They have said they need the case looked at by independent third parties including... social services. I cannot figure out how the organisation that decided to ignore its Duty of Care to me, can be regarded as "independent". The CHC Nurse wouldn't give me any real information about what the Panel wanted, who else they would be asking, or when a decision was likely to be made. All very unsatisfactory.

    The CHC Nurse had discussed my case with her Lead Nurse and, between them, they agreed that she should begin taking steps to set up a care package for me. She had found an agency who think they can provide the whole package. Someone from the agency has contacted the ward and is coming to see me on Monday.

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  • Gillette
    replied
    Originally posted by Dis1960 View Post
    Nice to meet you today Dina

    Great wheels too
    Thanks, Douglas. It was good to meet you too. The wheels might look the part but, my goodness, it is so uncomfortable.

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  • Terry
    replied
    It's always nice to meet other people from the forum.

    I just wish it was in a different situation.

    Love Terry

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  • Dis1960
    replied
    Nice to meet you today Dina

    Great wheels too
    Last edited by Dis1960; 26 September 2019, 17:13.

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  • Devonmaid
    replied
    Hi Ellie
    As you know with MND things can change by the day. As long as his weight is maintained etc we will cope. We will definitely look at overnight feeds if needed though. At the moment I put water up and give meds before and after feeds so not a problem yet. xx

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  • Gillette
    replied
    Yes, Lynne, I think we are very lucky with the NHS services locally.

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  • Gillette
    replied
    Hi Hayls,

    Oh, crikey, I don't think I'm any different to anyone else. I'm just trying to cope with everything this horrid disease throws at me. Actually, if I wasn't restricted by MND, I'd be able to dodge the cr*p more easily.

    I shall bear in mind your experience and shout if I'm getting in a stew. Thank you.

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  • Hayls
    replied
    Dina, you are an inspirational person, I’ve just managed to catch up with your thread, what a rollercoaster you’ve been on but so glad your resilience and determination has kept you going, so glad your getting out to spread your wings

    My previous life before all this (MND) started was to facilitate people to remain as independent as possible in their own home, I’ve had experience in being involved in setting up packages of care and I’m a big believer in Direct Payments, I live on the south coast so it’s the retirement capital of the UK and we have a huge amount of care agencies providing care at home. Don’t get me wrong there are amazing carers out there but I’ve tried so many companies and quite often the same problems occur. Having you own personal budget will mean you have more control of having a package of care that works for you and so you don’t loose control, I’ve seen this happen but in my career I managed to change quite a few peoples lives for the better including my Dad’s with his FTD but I could see the difference it made to his life and others.
    I know you’ve got a lot going on and I’m needing a PEG very soon but I just wanted to let you know about what little knowledge I have so you can make the right choice for you with the information you have, thank you for sharing your journey, I’ll make sure I’m armed and ready for anything heading my way, hope you find some sunshine while out today
    Big hugs

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  • Lynne K
    replied
    Hi Dina. It's good that everything is progressing well and that you can get out. Sounds like we are lucky in our area. Lynne

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  • Gillette
    replied
    Hi Sheila,

    Yes, I'm being treated very well, thank you. It is a lovely ward. It is a specialist ventilation ward with excellent staff : patient ratios, which mean that staff have a little more time to talk to patients. I think that, in the north west of England, we are very fortunate to have access to this facility.

    Oh, and, as I am medically fit for discharge, I have a Get Out Of Jail Free Card so that I can go out for the day, or the evening!

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  • Sheila
    replied
    Hi Dina,
    Good to hear things are going along quite well, at the moment. And they are treating you very well.
    Best wishes
    Sheila

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  • Gillette
    replied
    Originally posted by Sheila View Post
    Hi Dina!
    Do you think at the start they were giving you too much feed? I hate to say the word but force fed a bit?? I hate the feeling of being full up. Like Kayleigh said when you are home, your appetite will be better! Everyone is different, myself I have a poor appetite, never have been a big eater actually. So if I have a peg done, I know they will have lots of trouble with me Lol!!!

    Love Sheila x
    Hi Sheila,

    No, I don't think they were actually force feeding me. I don't remember them forcing me in any way. I have been involved and had choice every step of the way.

    Things seem to be bobbing along quite well, at the moment.

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