Its all about the money not the care!!!

[LisaFlynn]

My mom is living in residential care, and have been for just over a year as her health has deteriorated rapidly, to the point she is now wheelchair bound and cannot live independently. She is also starting to struggle with eating and drinking, and her neurologist has mentioned to possibility of peg feeding in the not too near future.

The reason for my post is that my mom has been paying for her care privately but has now got to the threshold and the LA should now be starting to pay. Her care is approx £800 a week, and the LA are saying they will only pay for £600 of it, and that I am responsible for the balance. I am a widow on one salary and simply cannot afford to do that. They have said that if the third party balance isn't paid they will need her to move somewhere that is within the £600 allowance. I do not want this to happen, I believe it will be detrimental to her already deteroriating health. Just wanted to reach out and see if anyone had any dealings with this and how they managed it.

Thanks

Lisa

[Chrisbobbi]

apply for one going health care asap speak to Parkinson’s nurse who can do initial assessment , it’s a hard process but they may pay ? I have no further experience as dad had assessment on the Friday and went into hospital on the Sunday

My dad died of psp on Monday just gone , please speak to your mum about what her wishes are because my dad overnight lost the ability to communicate and it was heart breaking not knowing what he wanted

[LisaFlynn in reply to Chrisbobbi]

Thank you - I did ask about ongoing care but because she is in residential and not medical care, they wont pay which is absurd!!

I am so sorry to here about your dad, sending hugs. I do have POA for my mom, and she has a DNR etc in place. I don't want to frighten her with anything else

[Bergenser]

This must be so distressing, hopefully there are organisations that could provide help. PSP is very much a medical condition so there should be another assessment of her needs before e.g. moving your mom. Did you talk to Compass continuing-healthcare.co.uk/ about trying for CHC? Does her current home offer nursing care? It may be she could be offered NHS funded nursing care in the current home even if her CHC claim is rejected.

The PSPA may have more practical support to offer, and I would talk to e.g. Age UK for more details about your mother's entitlement as well.

ageuk.org.uk/information-ad...

I wish you the best 🌻🫂 - the nurse at our local surgery keeps telling me "the budget is there (for CHC), it should be purely about the patient's needs"

[David750]

Hi LisaFynn, I am so sorry to hear of your predicament. Engaging experts can land you with a fee. Before you embark on this go to the PSPA website (pspassociation.org.uk) click Help & Support, then click PSP Matters Magazine and see edition 2 Raising Awareness - scroll to the coloured map, locate your county and the name associated is your Car Navigator. She knows,about the help & support for your area. Phone the PSPA Helpline ask to speak to her and relate your situation. The PSPA,can advise on CHC Applications. All my very best wishes

[45purple]

Hi.Lisa sorry your in this position. Everything needs to be re accessed with your mum. Social work, Parkinson nurse, Doctor and I would contact PSPA for help and they will point you in pointing you in the right direction. Sending hugs fro Scotland 💜

[messier]

You definitely need to get advice about applying for continuing healthcare CHC. Take a look at beaconchc.co.uk/.

[AnneandChris]

Hello there

I'm so sorry you are both in this situation.

In the longterm, or perhaps sooner your Mum will need nursing care and potentially a move into a nursing home, if her current one us unable to meet her needs.

This can then by funded by CHC, but sadmy they do not fund those in residential care.

Please talk to your GP, District Nurses and other medical professionals involved in her care as they are best placed to recommend any changes that nay be required. Our District nurses were responsible for applying and getting CHC funding for my late husband.

Also PSPA can be invaluable with advice etc. etc.

Good luck, take care of yourself too.

Anne