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What to do - Carers UK Forum

What to do

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My father is on dialysis and we’ve been having some problems with the satellite unit where he receives treatment three times a week. They keep putting him on the machine late (not because of issues with the machines etc rather because they are short staffed/ other patients are more vocal so Dad is always last in the queue- he can’t see or hear well so just sits and waits for hours at a time whilst others are able to make a fuss and go in front of him). On Monday, for example, it took nine hours for him to receive four hours of treatment. That probably doesn’t sound like much but he is elderly and frail and missed the carers that the Council send as he was home late. I called to complain speaking to the social worker. Today the nurse in the unit phoned to say they want to move my dad to another unit - the acute unit. Things will be even worse there (we have been before when Dad first went on dilayis) naturally they have to prioritise emergencies so you never know what day or time you will be on the machine and they cut treatment times short. This will make his care plan completely unworkable. I’ve said we don’t want him to be moved there and for now it sounds like they might accept it. I’m so scared though that they will change their mind. If that happens everything will fall apart. The care plan won’t work, dad will get ill with less treatment and I would not be able to hold down a job. I just don’t know what to do. I feel desperate and have no one to talk to. I’m sorry to be contacting you again but just can’t cope.!
Oh, that is so so so bad of them! Sounds like they are 'sacrificing' your poor dad to 'everyone else'.

I know HE can't make a fuss, but YOU can, but if you are not 'on the spot' that is hard to do.

But it is completely unacceptable that a frail, elderly man is kept hanging around for NINE hours.....awful ,awful awful.

May I ask if dialysis is absolutelyu necessary? I only ask because the dad of a friend of mine only has 5% kidney function (of his remaining kidney), but manages on a catheter alone.....any chance of that for your dad????

These days we hear about 'portable' dialysis machines at home - any chance of that, do you think????

Sorry if all of this is hopeless - but I hope something can be done to cut through this current appallingly unacceptable situation for your poor, poor dad.
Is this not a matter for PALS? Or a formal complaint , or involving his consultant?

I'm not sure but surely at least one of the above should help?
Can his GP do anything to read the riot act? They are more 'listened to' than 'mere patients' (let alone mere patients' mere family.....)

What about getting in touch with the support organisations for kidney disease?

eg
https://www.kidneycareuk.org/

(several more, just on a quick Internet search).

Sadly, they are probably all too used to this kind of thing, and may well be able to advise you, possibly even act as an advocate for your dad, etc etc.
Surely if there are regular patients, they should have a rota so that they all take turns at being first, and last?!
They could be seen to be discriminating against him because he is deaf, and is also elderly and polite. I would use this angle when complaining.