Hello
Firstly, I just wanted to say a huge thank you to everyone that responded to my first post this time last year when my mum had her new diagnosis. It was so kind and helpful.
Sadly we are seeing a decline but I feel mostly due to her osteoporosis and numerous infections due to her huge leg ulcer from cellulitis.
We had been paying privately and directly to a standard care agency for carers to come 3 times a day following her discharge last year. However, this was because I was on Mat leave and spent most of my time coordinating everything else! Now I’m at my home as my child is in nursery so can’t do anything like what I used to. My employer is also not at all sympathetic to my situation!
Anyway, following her latest discharge I felt her needs might have changed and we have moved to 4 carers a day to get the basic personal care done. We also now have a social worker and they are to do a financial assessment. I have two questions really the first relates to what we can include as a disability related expenditure (she’s only just turned 71, isn’t all this care needed due to her disability!!) and the other is the care plan I should be pushing for as she lives on her own (I’ll post separately about that as imagine it’s a big topic in itself, as she lives alone).
She sleeps on a hospital bed with an air mattress. The bed was provided by the NHS but obviously there is a big cost associated with running it all day and especially when she is in bed (at least 10 hours a day). She also has a recliner chair. How on earth do you work out the additional costs of running these things?
She puts a clothes/bedding wash on daily as she is a messy eater so nothing can be worn twice. Bedding is also changed most days. How do you set out the additional running costs of these?
She is due to buy a folding electric wheelchair as I cannot take her out in her push wheelchair with my toddler as I can’t manage them both and child naps in her pushchair! With an electric wheelchair she can manage herself once we are out under my supervision. I see they have a discounted annual amount you can offset against that rather than being able to take it off your savings? She walks around the house with her zimmer but can’t manage the outside rollers as the breaks are too difficult and she needs something that’s still to arrest her.
She also relies on ready meals which are obviously more expensive (£5 per meal) than being able to cook anything for yourself. Do they take this into consideration?
She needs a cleaner (me at the moment but I can’t go on doing it, I’ve needed to employ a cleaner to clean my own home as I’m never there!) and a gardener. Can these be included?
Is there anything else that can to be added?
Do they allow her attendance allowance on top of the living wage baseline amount or is that included on the total income?
It’s quite concerning the amount you are left with to live on, circa £200 a week? As you need to pay for council tax (hers is huge), gas and electricity (again huge as in house all day as is housebound and obviously bad circulation means always cold) and food (again her weekly food and necessities (black bags as district nurses use a new one each day when washing her legs), cleaning wipes etc as she’s much more messy!! Comes to over £130 a week!
Any help of assistance navigating this all would be much appreciated.
Sarah's wood
What is considered the latter stages of MSA?
I don’t understand 
