My Mum is in a care home as a resident but was finally diagnosed with FTD (Frontal Temporal Dementia) plus PSP.
She falls regularly - is covered in bruises - and doesn’t get the level of care needed anymore. I struggle with her being there, it seems cruel, but I live in London and she is in Preston. She doesn’t make much sense and is confused and distressed, it’s heart breaking. I feel I am letting her down.
The home doesn’t seem to know how I can switch her from residential to nursing status and can’t help me in my battle to move from self funded. She has been there for a few months and has now run out of money so I am now funding.
Seeking advice on whoever she qualifies for CHC, but absolutely any advise would be so so welcome from this kind community.
Thanks you
Alison
Written by
Justbekind
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You don’t need to pay for her care, unless your Mum gave you a significant amount of her money to avoid paying for her care, they will ask this,
Social services are very good at knowing when CHC need to pay elements of the costs e.g nursing costs. There is some guidance here about CHC funding eligibility
Is the care home your Mum is in a nursing home? If not this may mean she needs to move to a more appropriate home, but that can be discussed with social care, If the care home isn’t prepared to help you, it sounds like they only care for the income which unfortunately can be normal as they are money making businesses (not all are like that).
Contact your mums local council Preston, explain the situation and that the money has run out now and you can’t afford to keep paying (even if you can, you dont have too) this will mean they have to address her urgently. They will be working today.
I'm sorry to hear about your Mum's condition. I have a few comments about care and cost of care.
Firstly, adult social care have the responsibility to provide adequate social and personal care. If the person themselves have less than the threshold amount of funds, social care should pay for that care. Although family could be asked to "top up" if the person is in a care home where cost are higher and they won't move to a place that fits the budget, you should not have to self-fund your mum's care.
Second - the care should be appropriate for the person's needs. This doesn't depend on the diagnosis - though having the diagnosis should help. In my experience, PSP patients - and I think particularly if there are "frontal" traits such as poor impulse control - require very personalized care. It is essential that someone does a full assessment your Mum's care needs, with a proper understanding of the specific difficulties that FTD and PSP brings.
Third - CHC would shift the responsibility for care and funding to the NHS, if it can be demonstrated that your Mum's needs are a "primary health need" rather than ordinary social and personal care needs. The CHC assessment is often initiated after a hospital stay or another "crisis" but your Mum's GP and/or district nurses/and or social care team could (and should) initiate the process before an accute crisis occurs. The care home should contribute to the assessments but aren't really a part of the multidisciplinary team.
Perhaps you could write a letter formally raising your concerns to all of them. That might be quicker than trying to get through to the various teams on the phone. The concern would be about unmet needs, rather than directly about funding. You may have to explain (repeatedly) that you Mum's condition is far more complex than "just" dementia. Behind the confusion and erratic behaviour, she most likely thinks and feels like a healthy adult but might not be able to express herself. This could lead to strong feelings of isolation, frustration and anxiety. She has every right to be helped to communicate and make choices about her life and to be in a safe environment. Her needs shouldn't have to fit into fixed schedules and rely on staff that aren't equipped/trained for her specific needs.
I appreciate it must be extra difficult to deal with this at a distance. Do use the PSPA - and this forum - for support every step of the way.
Excellent advice 😃 we had to push the GP / District Nurses consistently and we still do - without knowing your mums condition it’s hard for me to comment more. With my dad it was ensuring he was on the Gold Standard Framework with the GP, my brother and I literally kept pushing to ensure our dad and mum get the support they need. Dad who has advanced CBD is cared for at home by mum and supported by a team of carers via fast track after a crisis happened.
I don’t know if queens court hospice (Southport) cover Preston, they are incredible
Thank you so very much - it’s amazing how well you understand the situation, and writing a letter to all parties is a great idea - quick note, would an email be sufficient or is this one of those moments that require pen to paper.
The formal diagnosis was given to us verbally on 12th December after months and months of delays and cancellations, but we have yet to receive a letter from the neurologist as promised.
some excellent t advice from others. We managed to get CHC for Mum who has PSP and other conditions it’s not just about the domains it’s about the NICU. She’s in nursing care not residential care and we did a lot of prep. The PSP association are excellent and their guide to PSP for healthcare professionals was helpful for both CHC and also the care team. Here is the link pspassociation.org.uk/infor...
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