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Life-limiting illness

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MS

5 replies

wotcanido · 16/06/2024 13:47

I am not sure if this is the right place for this but I hope I can get suggestions & advice pls

My friend is got MS and practically helpless - he is wheelchair bound and can't do things by himself

Now, it took 2 years for social service to pay any attention to him and move him to what they call a suitable accommodation which was not suitable at all for his needs

cants access bathroom easily as doorway too narrow
Can't enter or exit house because of door step and no ramp was provided which means if there is a fire, he can't get out of the house

They called in local charity to donate washing machine fridge plates, cups, etc

I helped him install the flooring which social services were not willing to do at all and were ready to move him into the accommodation without flooring if I hadn't stepped in to sort it out last minute.

They put in the accommodation with no connected cooker or microwave. I had to book a local electrical company to connect the cooker at his cost and bought him a microwave

He's got carers through a care agency called X care (name changed) they provide carer who are sent to check on him 2 times a day but increase to 3 times a day after I insisted.

But X care is horrible and not caring for him probably at, they moved him leaving some of his things at the old house and I have asked that they go collect it several times but they haven't

They were to register him at a local surgery and kept saying they would but didn't

He's called me today to say he's soiled himself and I have been trying to called X care for that past 2 hours but no answer at all as I want to find out if the afternoon carer could go to him earlier than planned . They didn't answer my call but answered the call to fall responders who my friend had called to ask for help

I have asked X care to send me my friends rota for so that I have an answer for my friend when he calls me to ask when his next carer would be visiting but they have let saying they would have to ask for his authorisation which they haven't and I keep asking them to.

My friend is frustrated and so am I- I am only trying to help him - speak for him but no one is doing what they are meant to do not even the social services

Now I am wondering if perhaps a live in carer would be more appropriate for him and ask that X carers be stopped they are suppose to take charge of his care, request his medication etc but none of that is done at all.

I am planning on calling his social worker and x care tomorrow to tell them I am not happy with the help he is getting and want his care transferred from x care to another agency (I am sure they are all same ) until a live in carer or on call carer can be found for him.
A whistleblower from X care told me they have got about 11 people on care rota and it all mismanaged and confusing.

Pls pls how can I resolve this? How do I go about it pls

OP posts:
Sunnysummer24 · 16/06/2024 13:50

Who is going to fund a live in carer?

Witchbitch20 · 16/06/2024 13:56

He should have a dedicated MS nurse who should be able to signpost to organisations that might be able to help. The MS Society is also a good resource.

wotcanido · 16/06/2024 14:45

@Witchbitch20 thanks a bunch, I shall be calling the MS society tomorrow

His MS nurse is a bit useless too.

OP posts:
wotcanido · 16/06/2024 14:46

@Sunnysummer24 it will be funded the same way his current care is funded. He pays for it btw

OP posts:
Sunnysummer24 · 17/06/2024 10:14

wotcanido · 16/06/2024 14:46

@Sunnysummer24 it will be funded the same way his current care is funded. He pays for it btw

If he is paying for care then SS don’t need to be involved at all. He will pay the agency directly and change to another with out involving them.

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