Top up Fees for care home

[Grease3]

My mum was diagnosed with PSP in Oct 2023 but started showing symptoms about 4 years before.

She was taken into hospital in Nov 2023 with UTI and discharged to respite care (NHS block bed) but following 3 other admissions for UTI and chest infections she is still in the nursing home. She has started to get used to the home, the routine and the staff (1 person in particular with experience of PSP). Social services are looking for a home for a permanent placement but we have realised moving her from this home is going to have a huge affect on her.

We have been told by SS that they don’t use this home as fees are too expensive so as a family we are considering seeing if she can stay where she is and pay the full rate (council + top up).

I wondered if anyone else has experience of doing this and could offer any help or advice.

Thank you

[GeorgeMMXVI]

Hi Grease3,

My Mum has been in a nursing home since March 2023 as a self funder due to the fact that she had savings and property in excess of £23,250. She has paid in over £70,000 in fees so far and her money in going down fast. We have recently been told by our local council that they will not fund this home when her money runs out as the fees are too high-Something the home did not share with us when they accepted her as a resident. My point is that you need to consider how long you be able pay the top up fees. We're faced with the horrible thought now that Mum will need to move and she doesn't cope with change at all. Had we known that she wouldn't be able to stay at her current home when her money runs out, we would not have considered her moving there. She has just been refused NHS Continuing Health Care funding but has been accepted for funded nursing care. Mum was only paying the residential element of her care, so this additional funding will not make a difference to the weekly amount she pays, but will go directly to the home. Sorry, not much help, but just something to consider. All the best x

[Kelmisty in reply to GeorgeMMXVI]

Argue, if she is settled and well cared they must consider the effect on moving her. They can pay for these placements but try to avoid where possible.

[Grease3 in reply to GeorgeMMXVI]

Thank you. It helps to know others are out there and sorry you are going through similar issues. Everything is such a battle. Sending lots of love

[Kelmisty]

Have you looked into CHC funding? Might not solve the issue but might be a route?

Top up fees, I guess if you can afford them for an undetermined timescale?

I would argue with social care strongly about the effects on her to move her, the knowledge for her rare illness they can pay for the home but will choose not to want too. They do have to take into account patient choice and offer more than one. Which as far as I am aware will be difficult to find a home that not only meets her current needs but can meet her future needs.

Maybe speak with the PSPA about what you can do or need to know for a suitable placement

[Grease3 in reply to Kelmisty]

Thank you for your advice, it’s really appreciated ❤️

[Newstead1]

my husband was finally diagnosed with PSP in oct 2023 after many falls and other problems. I have a heart condition and find it very hard to manage him at home so he’s going into a nursing home for a month at first to see how he gets on with a view to it being permanent. I can afford to pay the fees for a while but will face the same as you eventually. I don’t even know if our social services will take over the cost but if not then he may have to move or I’ll have to sell the house. It all seems so wrong to me. I wish you well.

[Grease3 in reply to Newstead1]

It’s so wrong! Social services have offered another care home now even further away for my 83 yr old Dad to drive to, but he says he will still see her every day 😢

I have a call with SS this morning 🤞

Wishing you all the best too and keep us informed in how you get on.

Lots of love x

[Kelmisty in reply to Grease3]

Stay strong, this is a tough battle but back up with facts (maybe even visit the ones they are suggesting, test them on their knowledge of your Mums illness/similar illnesses) it’s not easy.