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OUR timetable - Carers UK Forum

OUR timetable

Share information, support and advice on all aspects of caring.
grrrrrrrrrrr, i need to winge today, apologies in advance.
a carer today was going to put my partner back to bed at 3pm because 'that's what it said in the care plan'. for no other reason.
this will be the care plan that 'appeared' at our house, the same one i have told the case management team many times before is not agreed as it is not our plan. they keep trying to push it on us. it was a plan divised by some apparently 'expert' team that we no longer work with because they tried to enforce this plan on us, amongst other things, like basically not listening to what we want, or, horror never once asking my partner what he wanted!!!!! they were divising a plan despite only having spent a sum total of about 4 hours with my partner.
i'm going to be blunt now, it is a shitty plan - trying to put my partner in boxes for each 1/2 hr of the day - what the hell is that about? How draconian. They are always on about managing fatigue, like we are stupid and don't know he suffers from this or something. When will a patient that suffers with fatigue get fatigued? Well apparently between 3-4pm every week day, when he is 'timetabled' for bed rest. it is such a nonsense. what happened in the beginning when we humoured them and followed this plan? yes, you've guessed it, my partner couldn't sleep at night. he now, under our plan, which relies very much on suck it and see each day and common sense, sleeps much better than he ever has done.
what point am i making exactly? i have just come off the phone for the fourth time, explaining to the case manager that we will timetable our life, as we are the 'experts' of us - it is our lives!!!! and they need to put this message across more categorically to all carers (most by the way agree with us). Basically, what we want to do with our time, within the realms of what can be provided, of course, is always OUR decision and that comes first before any care plan. Why is it so hard to get these people to understand that this is our life and we want to be in charge of it. We never ask people to do things they shouldn't, we just want all to respect that we are in charge of our lives. I should at this point say, we have always asked a range of experts for imput and researched heavily into brain injury, in fact i've often told these 'experts' about research and evidence to the contrary that they didn't even know about!!
And as for experts - we want help, all that we can, but help has to be helpful. sometimes experts, like our private physio, is amazing. but this community team, i don't consider them experts. i don't think a badge makes you an expert. why is it also hard for the case management team to understand that the experts can get it wrong, often do and that asking families or the other carers is a much better option. can we have some common sense please?
Are we the only ones to find this? Experts trying to come in and take over your lives and making a general balls up of it and then looking at you in disbelief when you dare to tell them, no thankyou, i'll take it from here if you don't mind.
drives me nuts Image
You are not alone, battling with the experts is part of the job, even when you have an expert who actually knows and has worked with the person you care for and has written a report other experts who have no prior knowledge of them and very little current knowledge always know otherwise and best. If I had listened to the experts earlier this year my husband would have come home to spend the rest of a shortened life expectancy in bed, having won that battle he would have come home to sit in a wheelchair all day, having won that battle he would have been unable to walk short distances outside, he gets up, transfers himself, can walk indoors and outdoors, can wash and, if I can get him into it, shower himself, dress himself, etc., every single one of these fought for. He is still hard work and very dependent but at least we are still together, if I had listened to the experts I could not have cared for him, I am disabled myself, and he would now be languishing in a care home against both our wishes. I am not only an expert on my husband, after years of fighting the experts I am now a battle-hardened expert at beating the experts Image .
You are not alone, battling with the experts is part of the job, even when you have an expert who actually knows and has worked with the person you care for and has written a report other experts who have no prior knowledge of them and very little current knowledge always know otherwise and best. If I had listened to the experts earlier this year my husband would have come home to spend the rest of a shortened life expectancy in bed, having won that battle he would have come home to sit in a wheelchair all day, having won that battle he would have been unable to walk short distances outside, he gets up, transfers himself, can walk indoors and outdoors, can wash and, if I can get him into it, shower himself, dress himself, etc., every single one of these fought for. He is still hard work and very dependent but at least we are still together, if I had listened to the experts I could not have cared for him, I am disabled myself, and he would now be languishing in a care home against both our wishes. I am not only an expert on my husband, after years of fighting the experts I am now a battle-hardened expert at beating the experts Image .
Good for you Parsifal! Image
Rachet , do not allow them to take control of the care plan any more. You should be telling THEM what you want the care plan to include or be like. I've never heard of anyone's care plan being made which disregards what the client (sorry, I hate that word) or their carer WANT or NEED.
Insist they come and do another home visit and get another care plan made up to SUIT YOURSELVES.

Gawd, they are there to help YOU and your hubby NOT the other way round.

(sorry, it's just made me so mad too).
We carers have numbers and time on our side. My local authority only employs two educational psychs, for around 400, 000 people. Now, it stands to reason that they cant spend too much time on any one funny-looking kid, so as long as you keep below the radar and brush your teeth before your kids annual review, you can pretty much steer the agenda your way.

The way I look at it is : professionals and carers are like eggs and bacon.

You see, the chicken is involved, but the pig is committed!
But even in their time constraints, they should be doing what littleRachet and hubby want/need.
And they should surely have asked and planned what was going to be done during that time, to suit them?
Yes, they should. It is supposed to be person centred, and they are in breach of every manual of best practice standards I have ever read. I would complain to the director of Social Services if it were me.
So, it sounds to me like he must suffer from a rare form of fatigue that makes him mute as well???

I'm sure that if he was tired enough to want to go to bed, he'd either let someone know or be sat in his chair/seat drifting off to sleep Image

Could you not take their timetable and write your own based on theirs that would show the shift in your caring pattern as a result of their timetable? I'm just thinking that, perhaps, seeing that you are going to be awake until "stupid o'clock" as a result of it might be enough to convince them to have a rethink or could you write your own and tell them that this works better for you?

It might also be worth reminding them that you are your husband's primary care giver and happen to know him and his needs far better than they ever could.

Well done on taking the stand against them though. Always stand by your beliefs.
summer - we have already given them OUR timetable a number of times, they are just ignoring it. Problem is they have to produce guidelines to which the carers work, as they have a duty of care to the carers, which is fair enough. Problem is they get this CBIt team to produce them, including this timetable and they are all crap, they even get his arms mixed up between left and right - his left side is his weak side.
Now I'm thinking, I will write all the guidelines and send them to the NHS and TELL them by all means get them checked by experts, but these are OUR guidelines and what we say goes - can I do this - can I be this resolute? (we ALWAYS stick to within the realms of the job role and never ask them to do things they shouldn't)

Exec - can i ask a favour - what are these best practise guidelines? where can i get a copy? We are under continuing care NHS merger of health and social care. I've never seen these guidelines, or best practise manuals. I would love to.
I personally would, in addition to the national guidance, ask the local organisations providing the care for their policy and practise guidance, a simple request of this type can work wonders if they are in breach of their own policies.