carer assessment : I’ve been in touch... - Multiple System A...

Multiple System Atrophy Trust

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carer assessment

Bamboot profile image
8 Replies

I’ve been in touch with our local council this week as advised by the MSA Trust. Looking to get a carers assessment.

My husband isn’t too bad at the moment but he can’t be left on his own, he is suffering with pain in his shoulder and neck also been sleeping a bit more in the morning and late afternoon. Is this normal.

Due to his falls also he’s unable to make drinks or food for himself. So I was hoping to get someone to come in and sit with him for a few hours every week to give me a break as you all know it’s hard when your with someone 24/7 . Has anyone else done this assessment ? apparently it helps as time goes on.

Best wishes

Doreen

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Bamboot profile image
Bamboot
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8 Replies
Ruthi15 profile image
Ruthi15

yes you can get direct payment and you can choose the care package you want either employ people yourself which an accountant will do all the paperwork for or use local council staff I did it for 7years I employed my husband sister it was a fab service

mandg profile image
mandg in reply to Ruthi15

This is interesting Ruthi15, is this means tested though?

Kaye31 profile image
Kaye31

it definitely does! I didn’t want it but couldn’t be without it.

Your local hospice will offer care sits to allow you to do this. They come for a couple of hours and you can go and be you!

Definitely pursue for care and take the maximum they offer as it’s easier to reduce than increase hours.

I’ve spent the last year + dealing with all of this and now have CHC which begins end of this month!

There is help out there but you need an excellent OT and Neurologist to get it for you! MSA are fantastic too and should be first port of call xx

Paul_and_Sue_Wood profile image
Paul_and_Sue_Wood

HiIt works well as it takes the strain after looking after someone off you both.

Caring is about caring for 2.

Elect to control your own budget and find your own local care company to do the work initially.

They will get them up , wash them, dress them , make food or drinks for them.

Give you time to do what you need.

Sue and I are into our 11th year of care support.

Paul

Schmall profile image
Schmall

I hope you have a positive experience with your care assessment.I did get someone who comes in from an organisation called Volcare that keeps him company once a week whilst I am out. This came from my carers assessment, when I was finally deemed worthy enough to have one.

He got carers in place that come in daily due to intervention of the failty team though as Greenwich Council initially told me they couldn't help me and I couldn't have a carers assessment.

Monkeyfeet1 profile image
Monkeyfeet1

bamboot

We appear to be in the same position. Unfortunately, it appears to be a postcode lottery! I’m only 53, cannot make drinks or food due to falls. Someone from the council came around and I provided all documentation. Unfortunately, we were not told about the personal contribution which is very high! My husband has to do everything as well as work! Thankfully, we’ve got a lady coming from the hospice next week to keep me company. I’m happy for you to contact me.

Good luck !

Bamboot profile image
Bamboot in reply to Monkeyfeet1

Hi there Thankyou for your reply it was the MSA trust said it was one of the first things I should do. Don’t really understand how it all works. What sort of things do the assessment want to know, do they help you get someone from the hospice. I expect to pay but MSA said it was a good starting point for further help. I just want a few hours to myself but want to be sure my husband safe.

Good to hear from other people in same predicament.

Monkeyfeet1 profile image
Monkeyfeet1 in reply to Bamboot

That’s what my husband wanted too. I provided bank statements, cleaner bills - we’ve now found someone who does ironing.

The hospice was totally unrelated and done because my husband asked.

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