How much care could we be accessing?


I’ve just joined the forum looking for advice and support for my mum, she’s just turned 60 and has suffered from Primary-Progressive MS (PPMS) for the last 6 or 7 years.

She’s sadly reached a point where she’s completely lost the use of both legs and her hands are very poor (she can’t get food from a plate to her mouth for instance), so she currently needs help with everything from washing to eating.

Mentally she’s still doing great and is pretty good at keeping herself entertained, mostly trying to learn a new language. But she’s also a very proud women and hates the though of attending her local MS Society or any groups, largely because she’s upset by seeing other people with MS that aren’t in quite as severe a position.

She’s had an excellent and reliable carer through Equal Lives for the last few years who has made everything much easier. However her carer is due to retire at the end of the month and we’re pretty worried about the move back to agency care.

Because of her fairly rural location just outside of a town called Great Yarmouth in Norfolk most agencies we’ve ever been with have simply failed to turn up, or turn up hours late.

I’m desperate to look into alternative care arrangements and support, and have been looking into the possibility of a live-in carer for her.

Do any of you have live in carers currently? How much care support should social services really be providing? At the moment they seem reluctant to offer anything more than three 30 minutes visits a day, which just isn’t enough?

Any information or advice you might be able to offer would be much appreciated.

Many thanks,

I will put you back to the top someone will be able to help you if not contact the ms society help line

Hi, I have care, as I need a lot of help like your mum.

I can feed myself but need help getting up out of bed, putting to bed, showering, toiletting and dressing/undressing.

When was your mum last assessed by social services?

It sounds like she could use a newer one.

If the care she currently receives, isnt adequate, of course more needs to be added.

My package is expensive but is only for 26.25 hours, plus 2 sleepovers a week.

My hubby does all the other hours and it can be hard.

Live in care will be expensive and your mum will be means tested to see if she can contribute or not.

I had the same 3 carers for 5.5 years, but recently had to employ an agency when 2 left.

I like my new agency girl, but the agency keeps getting things wrong and I have to ring and sort it.

What about advertising for carers.

There are many agencies who are not reliable, so do some checks, yeh?

Good luck.


Boudica is right. She needs to be assessed by social services. If she has savings or property she will likely have to self fund or contribute.

Sounds like the best option is to employ a PA or a team of PA’s (that way you aren’t dependent on one person). Work out what exactly she needs and how many hours. Formulate an advert. You can advertise online and locally. This website is helpful

If the location continues to be a problem, try persuading her to move. I’m 60 and just moved to a bungalow. It was the right call! I get she may be reluctant, but explain you are worried for her and want to be sure she is safe and not isolated.

This guide is for people who have care and support needs, their carers and people who are planning for their future care needs.

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